Twitching Along ....

We went on our usual Date Day today and visited three Estate Sales. Two were complete duds, but the last one was fun. It was an old country house chock full of a lifetime of collecting all kinds of odds and ends. We both enjoyed ourselves there, and then we stopped by our usual Thrift Store haunts in that area and found enough plush lovies to more than make the day break even. It's fun having a hobby that pays for itself, plus helps other people, too.

We had our second meeting yesterday with our new Financial Adviser, in the process of deciding how to best protect our future and be sure there is money in place to take care of our needs. Our daughters know that we do not want to go to a Nursing Home, but realistically we can't assume they will be in a position to keep one or both of us at home, the way we did our parents. That's way too much a burden to blithely assume someone else will tackle. That means considering Long Term Care Insurance and putting money aside to pay for in home care if at all possible. We've paid out enough over the last ten years to know what is involved, and it's certainly not cheap.

He went over several different options with us, and I was having a really hard time following the differences, pros, cons, etc. So was hubby. We asked lots of questions, some several times, and he patiently went over each concern. We left with several brochures, still not sure of what we need to do. We'll see him again next week, after he's had time to pursue the options we were most interested in. There will be a Long Term Care expert at our next meeting, too.

We won't be able to settle some arrangements until I have a diagnosis. After all, what new insurance company would insure me for anything when my own doctor can't say what is wrong with me! So, for now I am stuck with the insurance I already have, and we can only do the research for more appropriate kinds.

Did I say stress makes my twitches and tremors worse? Yep, you guessed it. By the time we left I was grimacing and shaking like I was keeping time to some peppy music. Hubby even asked me if I was doing my hand on purpose, because it really did look like I was in tempo with the CD. But no, it was my body doing its own little dance duet. I "cured" the nerves the way I always do ...CHOCOLATE!!! Hubby knows what to do, so we stopped and I gorged on brownies. Better than any tranquilizer I have ever used, as there is no spaced out feeling afterwards. ;)

My Thanksgiving Prayer

This Thanksgiving will be our first without any of our parents with us. It's the first Thanksgiving where our older daughter and her hubby take over the reins of being hosts, passed down from my Grandmother, to Mama, then to me, and now her. It's a reminder that as things change, they really stay the same. It's a reminder of how very important family is. And how important friends are.

It's also a reminder that I am no longer the caregiver, a role I held for much of my married life. But now, I am "the sick one" in the family. Parkinson's Disease does not have any cure in sight yet, but only ways to manage the symptoms, with varying degrees of success and often horrible side effects. It is progressively debilitating, which I'm daily reminded of, as I talk to so many PWP who are so much worse off than I am. I see it in the difference in what I can do now, compared to last Thanksgiving. But, I am so very thankful that I am still able to walk, talk normally, write fairly legibly, use the computer without problems, that my digestive problems are calming down somewhat, that I am sleeping better, and that I am mentally still ME. I pray that I can still say that next year.

You dear cyber friends, who have been a listening ear as I chronicled this journey, you will never know how much you have helped me deal with all that has been going on this last year. You have helped me give voice to my reactions to this disease. I can't thank you all enough.

I pray that you will all have as wonderful a Thanksgiving as I will, surrounded by family, wrapped in love.

Amen

Physical Therapy Continues

I am shocked at how weak my right side has become. And a little scared, too, as I can see that I'm going to be in need of care giving a lot sooner than I had imagined, if I cannot regain at least a reasonable amount of my muscle strength. The PT has been very kind this week, and has allowed me to take the time to do the leg exercises on both sides, even though the "prescription" from the doctor only addresses the right knee. Actually, I don't really think the knee is the problem, only the result. The real problem, which is definitely the case on both sides, but more so on the right, is that my hip muscles are extremely compromised. That's causing the unnatural gait and putting the extra strain on the knee. The right one just complained more because of the stress shifting Daddy in the bed caused.

My shoulder is definitely improving, so that's something to be pleased with, anyway. She didn't even work on it yesterday, except for the electrical stimulation and moist heat therapy at the end of the session. I spent two hours there yesterday, just working on my legs and hips. Plus, we walked yesterday morning, and I did 3/4 of a mile, with the cane.

She wants me to cut back on the walking every few days to one or two laps to give my muscles a chance to recuperate, so I'll just sit and watch DH finish his laps on those days. She tells me that the Peripheral Neuropathy causes my muscles to fatigue faster than normal and bounce back more slowly, so I have to be careful to not overdo each set of exercises and rest longer between them than other people would need to.

We chatted while I worked, and it seems that she has another patient right now with idiopathic PN, too. Idiopathic just means the doctors don't know what's causing it, which is true for me, too. Anyway, I gave her the address for this blog to pass along to her, and I hope she does stop by. I know it helps me to chat with people with similar problems, and it's very hard to find much on the Internet about Peripheral Neuropathy that's not caused by diabetes.

My hip sockets and upper thighs ached the rest of the day yesterday, so I ended up taking a Lortab to get to sleep last night. I do feel better this morning, though, and we won't go to the track today, since it's our Date Day. That will help my muscles rest and rebuild. She wants to see me two times next week, again to allow more time for the muscles to rest before the therapy sessions. Of course, I have my list of home exercises to continue, so I'll still be getting therapy.

Oh, another thing I did yesterday was to stop and buy new bottles of my Centrum Silver and vitamin C+D. I found out at the eye doctor's office the other day that not everyone can dissolve the wax that's used to turn medicines into pills. That means some people pass the pills straight through their body without even getting any benefit at all. I had heard that before, that sometimes when septic tanks are cleaned out they are full of pills! So,to get maximum benefit, he told me to change to capsules or gels. Centrum doesn't seem to come that way, so I got the chewable ones instead, and I found the C+D in gells. She also said I was not taking enough of the C for my Osteopenia (loss of bone mass that is not as bad as Osteoporosis), so now I'll be taking those twice a day. She warned me not to try to just take one huge dose, though. She says the body can't absorb more than about 500 units at a time.

Sorry to sound so depressing today, but this has really slammed home to me how much function I've already lost, with no way of knowing if I can regain it. I can only do my best to follow the PT's directions and hope for the best.

Tearful Thoughts for RUTH

I started trying to read and catch up on what's been happening on everyone's blogs last night, so a few of you friends you may have noticed a quick comment from me. I was grieved to read this morning that Ruth's dear hubby, Mick, passed away on April 6. His passing was peaceful, with family there to share this precious time with him. Ruth is now dealing with all that has to be done, after faithfully taking care of him for the almost two years since he was diagnosed with cancer.

There's just no way to put into words the depth of sorrow I feel for her, not so much that Mick's struggle is over, but that this horrible cancer had to strike such wonderful people to begin with.

She's sent me several e-postcards of late, just to let me know she was thinking of me. And all that time she was dealing with Mick's eminent death, which, of course, I did not realize at the time. It just makes her cards that much more precious to know that she was taking that time for me. That's just the kind of person she is!
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Lots to Do Settling Daddy's Estate

This is the second time I've been the executor of an estate, but Daddy's is much more involved than Pop's was. Luckily, we have a niece who is a lawyer, so I'll have some help when I'm ready. I've tried researching what I need to do on the Internet, and I've been surprised at how little help I could find. Everything seems to be geared toward Estate Planning, rather than settling an estate.

April 15th is getting closer, too, and I've just not been up to dealing with important numbers. I did get a good start today, though. Starting is half the battle for me, as I find I've become quite the procrastinator in the last few years. I don't know if that's a sign of old age LOL, stress, or Parkinson's!

We walked again this morning, but I was slow as mud. I made it around for a half mile, using the walker. I've been using the walker all this week, but I depended on it more today, as I could feel the tightness in my shoulders when I stopped. That slow as mud feeling is the first Parkinson's symptom I had, so it's looking less and less like I'll be able to continue on just the Zelepar. The Neurologist told me I could go back on the Requip as well, if I felt like I had to. I've resisted, because the Requip gave me stomach troubles last time. Well, I had stomach trouble when I was on the Requip - that doesn't automatically mean the Requip was causing it. It's that uncertainty that has kept me trying to do without it. I'm just not ready to cope with stomach side effects yet. Maybe next week.

I taught 4th and 5th graders for 25 years, but I've seen the "Smarter than a Fifth Grader" TV show a couple of times since I've been back home. It's scary how much my mind goes blank on stuff I know I should know. I hope it's just remnants of caregiver burnout, and not the PD effecting my mental abilities. Stress can really do a number on such tasks, so I'm trying really hard to relax as much as I can. But getting things accomplished is part of what's needed to lower my stress level, too, so it's a matter of finding a balance, I guess.

I continue to be uplifted by all the loving comments. You all really are helping. Just a thought for you, if you need to send a sympathy card to someone. One of our friends included a neatly cut out copy of Daddy's Obituary notice in their card. It was very much appreciated.

All Your Wonderful Thoughts & Prayers

There's just no way I can begin to tell you how much I've appreciated all the thoughtful comments you dear friends have been leaving, just to let me know you were thinking of me, and to express your condolences.

It's hard to know how to get started again, after so much has gone on, but I guess the best thing to do is just start ....

I'm more rested, we're dealing with the long To Do list that is involved in closing out Daddy's affairs, and I've had a birthday.

I'm still resisting changing my PD meds, as we started going to the local walking track this week. I want to give myself a chance to build back some strength through exercise and Tai Chi first. My right arm and knee are still bothering me, but I'm taking less and less pain meds, so they must be getting better.

When I said on my last post that one journey ended and another was beginning, I was referring to myself just as much as Daddy. DH and I have had someone to take care of almost constantly for the last 10 years or more. It's strange to be able to make plans without having to take someone else's needs into account.

I have lots to do to get back up to speed with our blogs, BLOG VILLAGE, and our online sales, but I'm not pressuring myself. I'll get it done gradually.

I look forward to getting back to reading all your great blogs that I've been missing, so bear with me, as it may be awhile before you see me commenting on everyone's posts.

102 Years - Quite a Lifetime!!

Those of you who have been so kind to send your hugs and prayers to us while we tend to Daddy might be interested in reading what I've posted on my Yesterday's Memories blog today.

Hurky Jerky Girl

My DH saw me have a full body Parkinson's tremor for the first time today. We've been around each other so little for the last few months that it took him by surprise. We've been taking turns during the day staying with Daddy, and I've been up here every night since Thanksgiving, so we really have been just passing each other. I had described one of these episodes to the Neurologist last time, and DH heard me, but seeing it is quite another thing. I think it scared him, and I'm sorry for that. For several minutes I look like I'm doing a Michael J. Fox imitation!!

It's just that my Parkinson's meds can't keep up with the lack of sleep and the stress level I'm under right now. I don't want to make changes in my PD meds, if I can help it, until this time with Daddy is over. I'd rather put up with these unexpected episodes on an occasional basis than to over medicate myself.

Daddy is very stable right now. He's been asleep for several days now, totally unresponsive, except for some indication of pain when we are moving him to change the Depends. His urine output is low (it's been a week since he's had anything by mouth), so we aren't changing him but twice a day now. The rest of the time, he's sleeping peacefully. He's getting morphine every 4 hours, plus a suppository twice a day with Atavan, Haldol, Benedryl, and Resperidol in it. Talk about Chill Pill!!

It's such a blessing. If I could order up the way I would want to die, this would be it. I hope for his sake, and ours, that he continues this way to the end. DH's Mama and Pop died fairly peacefully, but my Mama had a slow agonizing death. I'm praying that Daddy will continue the way he is now, until the end.

Still about the Same

I've called Hospice back out here twice, because he was in pain that I couldn't resolve with the Morphine, or his breathing was worse. They're good to come, but it takes over an hour for them to make the drive. His heart is still strong, although the body is all but shut down.

I managed to get a little sleep last night, but mostly it's my arm keeping me awake. It's still very swollen above the elbow and painful all the way down to my finger tips. It's hard to say if I pulled a muscle, irritated a tendon, or if this is from the Parkinson's. Whatever it is, I'm not helping to change Daddy now. We have the nurses and aides coming, so Fred helps them do it. Daddy's bottom looks horrible now, but it's to be expected, since we have quit trying to turn him. He's just in too much pain when we have to, to put in a suppository for pain, or to change him. He's resting peacefully almost all the time, if we just leave him alone. So I've opted for bed sores, rather than upsetting him every 2 hours.

Frances is here today, so I've left her with Daddy, and I've moved up to the living room to try to get some sleep. Just thought I'd jot off how things are right now, before I try to get some rest.

Active Life = Strong Heart

Saying Goodbye

The Hospice nurse told me today that the nurse who stayed Saturday thought he had a heart attack that night. I had been guessing maybe two more weeks at the most, based on Daddy's refusal to let me put anything in his mouth. She told me to be thinking more like days. I've said my goodbye's, tried to finish the sentences he was struggling to get out, and he's ready - well past ready. I didn't have to hear the individual words to know the cadence of his "I wish this would hurry up and get over with," as I've been hearing that for some time now.

Saying goodbye is never easy, but our first Hospice experience taught us that it is important. Even if you don't think the person is aware enough to hear you, the loving words need to be said. And if they can't respond, you need to speak out loud for them, saying what you know they would say to you if they could. Not easy.

Time I Tried to Catch Up

I've ended up doing the very thing I really didn't want to do, and that's not keep this blog as a daily journal. It's just that so much has been happening lately that I just had to put blogging way down on my priority list.

So.... here goes .........

Since I wrote last, Daddy has been much worse. There was a large bulge in his upper right colon area that no amount of enemas, suppositories, stool softeners, or laxatives seemed to be effecting at all. We are fortunate enough to live in the country, where doctors still treat their patients as individuals. So Friday, a week ago, Daddy's primary care physician came out to the house after work! After feeling around on the area, he really didn't think it was a bowel impaction, but there was no way for him to be sure. He suggested we put Daddy in the hospital for some tests. I spent the weekend deeply upset by that prospect, not knowing what was best for him. Dr. Mc understood that we had no intention of any type of surgery, if they did find anything other than fecal matter. On top of the rest of my misery over making this decision, he would be in the hospital I swore I would never take anyone to ever again.

I finally decided that I would be in worse shape emotionally if I didn't at least give it a try, so I was in the hospital with Daddy for several days this last week. We came home Thursday, after the tests they did showed conclusively that it was not fecal matter. We stopped them from running any more tests, so it was left as a diagnosis of a soft tissue mass. I don't need to know what it is ... only that I can give him pain medicine, because it won't be causing more constipation on a blocked bowel.

We also brought home new pressure sores, because it took lots of complaining to get them to change him and turn him. And, when they did handle him, most of them were not gentle with his skin. Did I say I hate that hospital??

One of the two really caring PCA's gave me four hospital gowns to take home, which is a big help at this point.

Yesterday evening, when DH and I started to turn Daddy to change his Depends, he threw up all over the place. Considering the amount of food and liquid Frances had gotten in him, everything must have been sitting in his stomach all day!! He was obviously in pain, so I called the Hospice nurse, who advised that I not try to give him his night medicines or move him for at least an hour. We cleaned him up the best we could and managed to get towels between his skin and the sheets, etc., that were soaked.

After an hour, we changed everything out to clean, but it was obvious we were really hurting him with every turn. After reporting in to the nurse, she said not to feed him or give him any medicine, but to call again if he didn't go to sleep comfortably on his own.

I called her back at 2:00AM, as things were worse again, and she told me to give him the morphine that absorbs through his mouth. She arrived about an hour later, as we are on the outside reach of this Hospice territory. He was running a temp, and his blood pressure was very high. We managed to get the blood pressure med in him that he had missed at supper time, plus a sublingual tablet for fever. I'm not sure what that was.

She then suggested I try to get some sleep, and she sat up with him for three hours, while I napped!! There's a lot about this hospice I don't like, but she moved them up a few notches in my estimation, in the wee hours of this morning!!!!!

Part of the reason I haven't been blogging is that my right arm and hand have been in considerable pain and swelling since we went to the hospital. Thinking it would be enough, I only took my cane. By the time I had walked all over the place as they took Daddy for tests, I had put too much pressure on my arm, and I paid the price for not remembering to swap to the left hand often. Thank goodness, I had thought to pack my hot pad. So I spent his hospital time doping myself up with as much pain medicine as I dared to, and still staying awake enough to be harassing them to do their job. I just couldn't manage the computer very well at all!! It looks like I'm going to have to learn how to use a mouse left handed ... I'm pitifully uncoordinated as a lefty ... far more so now with the PD.

I'm also fortunate that we had bought a really nice wheel walker with the seat in it some time ago at an Estate Sale. DH was very depressed when we bought it, but it was a blessing when my arm hurt so much.

I can't thank you all enough for your prayers and kind thoughts while all this was going on. I knew you were worried about my sudden disappearance, and appreciate the emails I received. Just know that you have been supporting me, even though you didn't know what was going on.

"I Want to Go Home Now"

The human mind is a fragile thing when age or the onslaught of disease takes its toll. Since we've already been Care Givers for my mother and DH's father, who both had Alzheimer's, we've heard many, many pitiful pleas and angry demands for us to take them "home." My Mama was in the hospital, with me there 24 hours a day for 35 days, recovering from a broken hip and going through rehab. She never could get straight in her head where she was, but I expected things to be better once I got her back into her own home.

I was very disappointed to find that she didn't know she was in her own home, when we did get her back there. Each day involved question after question about when we would be leaving, why wasn't I taking her home, who were these strange people, etc. No amount of reassuring her that she was home, and that the people were her family, would appease her. At one point she was in a panic, because she was worried about her dog being alone at the house, with no one to care for him. What could I say? She was remembering the house I had grown up in, and a dog I had as a little girl. So I had to play along that Cindy was being well taken care of, and for her not to worry.

We moved Pop out of his home, and moved him in with us. So his constant requests to go home at least made sense!

But I was not prepared to have these same conversations with my Daddy! He's old - VERY old - but has been more or less lucid most of the time, even after he fell on Thanksgiving weekend. Well, he's been lucid about everything EXCEPT that he was still in his own home! He's forever asking me for his cap and jacket, so we can head home.

I've come to the conclusion that what they all mean when they ask to go home is to go back to a time when they were in control. A time in their lives when they had privacy. A time when someone else did not pick out the clothes they would wear, or decide what they would have for lunch, or when it was bedtime. A time in their lives when they could still drive, take a walk around the block, or, in Daddy's case, cut the grass.

As Care Givers, we can do our best to keep them safe and comfortable physically, and we can even play along with their delusions at times, but the one thing we cannot do for them is to give them back that control over their own lives that they so long for.

My Daddy will be 102 in less than two weeks. His body becomes noticeably more frail each day, his speech has become all but nonexistent over the last few days, and we can get very little nutrition or fluids down him. It frustrates him to try to talk when he can't get the words out. He can no longer help us when we turn him in the bed. His days and nights are spent for the most part sleeping. Sure he wants to go home. Who wouldn't want to return to a better time??

I both rejoice and am deeply grieved that he soon will be truly HOME. Seeing my dear Mama again. Walking with a full strong stride. Enjoying seeing all the wonderful sights that his blind eyes have been missing for many, many years. Hearing the angelic choir in all its glory. And I betcha he'll be on a riding lawn mower keeping the yard cut!!!

I'm already grieving his loss. Just writing these last words has the tears flowing. But he's lived a long life, with much to be proud of and to enjoy. It's time for him to go home.

Testing ... Testing ... This Is Only a Test

I thought I'd o a post without any back spacing or spellchcking, just to give you folks an idea of what my typing is like these days. This will also give me a benchmark as to the extent of my mind/finder coordiatniton at this time. so bear with me while you try to read my gobbledytook. LOL

Daddy an di both ahd a good night's sleep slast night!! so I'm much more rested to day that usual. We;re beginning to settle into something of a routine finally, alsthough we're still experimenting with ways to make the lift help us the most effiiently.

I did have to call the night service night efore last, because he was choking on his own spit in the bed about several hours after he went ot sleep. I tried moving the head of the bed up and down and turning him from side to dide, but nothing seemed to help. I think the nurse thought i was describing a death rattle when I first talke to her, but I assured her that I knew that sounded like. She said to wake hime up and see if that would help with stronger coughting. I let the bed flat, turned him onto this side, slapped him on the back the way cystic phibrosis patients done, and this huge glob of thick mucus finally came up. Surprisingly, he went right bakc to sleep, and slept well the rest of the night. I didn't thogh, as I was afraid it would happen again.

I seem to be going from one problem to another, as far as I'm concerned. Now it's my back hurting again. It's not the vertebrae, but the muschles of my upper back. That's from leaning across Daddy, even though we have the hospital bed. This is definitely from the Parkinson's, so I guess it's time to add the Requip to my meds again.

I can tell immediately when I make the se spelling mistakes and typing mistakes. At least I know it's wrong, but I take spellls of not being able to cooridante everything einvolved in acutally typing, And I really wa sa good typist, so it's not because I don't know how LOL!!

Well, of you've srubbled thorugh this you have some idea of the whats' involved in turning out a post the way they usually lool. It's the same with comments.

Did I say that Parkisons' is a terible disease? And I'm ant Stage One!!!!

Sleep? What's That???

I'm tired. I've reached the point that I'm too tired to sleep, even when I could. I have the Ambien CR, but the Neurologist doesn't want me taking it all the time.

Besides, I might not hear Daddy if I'm doped up. He's becoming very unpredictable as to his sleeping patterns. There have been some nights lately where he hallucinated much of the night, even clawing to take off his Depends and trying to climb over the bed rails. Other nights, he talks in his sleep. I've had several lengthy conversations with him in the middle of the night, where he never opens his eyes, and I can tell he's still asleep LOL! Other nights, he barely twitches a muscle, but stays in exactly the same place all night long. That's not good for his skin.

The lift has helped with the lack of strength problem tremendously (Daddy's and mine, too), and Daddy is accepting it without argument, thank goodness. He's also letting us feed him, which surprised me. I thought he'd balk, but I think he's beyond that. He still takes spells of hateful talk, but it doesn't happen too often any more. Frances heard it for the first time yesterday. It really surprised her. We told her that meant she was part of the family now. ;)

We've reached that point in care giving where we pretty much control everything to do with Daddy now. We've bought sweat pants and put his regular zipper pants away. I've put up his watch, wallet, and keys, which he'd always put on first thing each morning. He's no longer wearing athletic undershirts or his favorite flannel shirts. We've bought him some knit Henley long sleeve shirts instead, so we could get them on and off easier that the unstretching flannels. He's in white diabetic ankle socks, instead of his dress socks, and I can't remember the last time he had on both shoes. In fact now we're not even bothering with the slipper socks, as he's not standing or walking. The sores on his bottom and his heel look much better, because we have more control over his skin now that he's not walking and in his own bed. It's no wonder he keeps asking to go home! He certainly doesn't recognize the life he's living now. But he's safe (well, except for his rail climbing times), and he's as comfortable as we can get him.

The Zelepar seems to be sufficient for my physical Parkinson's symptoms, but I'm not sure any medicine could improve the mental deterioration I see, considering all we're doing right now. Thank goodness for backspace and spell check!!

At the rate I'm going it won't be long before it's just too difficult to try to correct all my typing mistakes. I'll just join Joe, and let you see what it's really like for me HA!!

So, I've cut out what I could in the way of other responsibilities. I haven't put a new item on eBay in some time, and I've put up a notice that we are not able to ship promptly right now. I've sent an email to all the BLOG VILLAGE members, asking them to help me with the monthly check on all the voting links and dead blogs. I've even cut down on my own reading and commenting, not because I want to, but because I'm just overwhelmed right now.

As you can see, I'm not very cheery today. I'll feel better once I get some sleep, though - whenever that will be.

My Uplifting Valentine's Presents

This last week has really been a strange one, on several counts. I wouldn't normally go this long without a post, but I tried to get a little too fancy with my Drive Partitioning software, and couldn't get the computer to boot at all! It took me several days to figure out how to fix it, and several more to get everything back the way it belonged. Luckily, I'm good about backing up my data, so I didn't lose any of that.

In between working on the computer, DH and I have had quite a time with Daddy. He's been getting more and more wobbly, and less and less able to follow our transfer directions. So, we've had several episodes of it taking every bit of strength the two of us had to get him from one place to another. The last straw was Monday or Tuesday (I've lost track HA!) when we had the usual bowel problem. Thank goodness I had decided to move the commode into the bedroom, instead of trying to take him in the bathroom. By the time that ordeal was finished, he just about finished all three of us before we got him cleaned up and back in his wheelchair. The Hospice nurse came not long after that, and she could tell how exhausted we all were. This time, when I asked for lifting help, she agreed that it was time.

So, what did I get for Valentine's Day???? A brand spanking new Hoyer Lift!!! Frances, our paid care giver, DH, and I learned how to use it this morning, and we were able to move Daddy from the bed all the way into the living room to his recliner, without any trouble at all. He's more comfortable, and we're MUCH happier. And our backs and nerves appreciate it, too!!

I've been pleased with how well the Zelepar has been helping me deal with all this physical and emotional strain. I did have a bout of hysterical crying this weekend, though, because Daddy's foot looked worse to me, and I felt so guilty that I had let it get that way. My head knew I'd done my best, but my emotions sure didn't. The Podiatrist was here today, and he's very pleased with how it's progressing, so that's a big relief. Hey, that's another Valentine's Day present for me!!

And, today, for the first time in years, the pressure sore on Daddy's bottom is all but healed! Present number THREE!!

I feel like a huge weight has been lifted off my shoulders. For the first time in quite some time, I really think we're going to be able to keep Daddy out of a Nursing Home. The lift, the gel seat cushion, our Estate Sale sheepskin finds, and the rippling mattress have made all the difference in the world in Daddy's quality of life. I thank God for his tender mercies.

Downs and Ups with Daddy

A lot has been going on with Daddy this week that has kept us both pretty busy. I called the Podiatrist's office Monday about his heel, and they said he would come by Wednesday evening. The regular Hospice nurse came and took a look at it and changed the bandages, telling me that the key thing was to keep the blister from breaking open. She promised that we would get the rippling kind of mattress this week, too, which is supposed to help with pressure sores, such as those on his bottom and heel.

Monday night was the worst I've had with Daddy. His usual bedtime is 6:30, but he wasn't sleepy then. That's not too surprising, since he sleeps so much during the day, but part of his night medicine is a Tylenol PM, so I can't let him stay up too late after taking that, or it would be dangerous to try to transfer him into bed. So, I put him to bed a little after 7:00PM. He spent the next 5 hours talking wildly about things like when was he going home, who were all those people, where was his bed, where was I going to sleep, and on and on. He would call me to the back every 15 or 20 minutes, and nothing I told him appeased him. When I told him he was already in bed, he would disagree, telling me he was in the car, and wanted to go home. About midnight he finally went to sleep, but the whole craziness started over again off and on every few hours until it was time to get up.

Not surprisingly, he was wobbly all day Tuesday, and I was worn out, too. So, Tuesday, Wednesday, and Thursday night I gave him 2 Tylenol PM! He slept soundly, and his walking was much better during the day. His appetite has even shown signs of improving a little.

His Podiatrist ended up coming out yesterday evening. He immediately set to cutting the whole top of the blister off!! Mind you, Hospice had told me to do everything I could to keep the blister intact. I was SO glad I had called him! He showed me a dark place in the tissue that was already beginning to develop into a deep decubitus ulcer, and said it would not have healed if it were not fixed so it could drain. He also told me to keep it open to the air as much as I could, instead of keeping it all wrapped up.

I think I've finally gotten my point across to the Hospice people that I expect preventative care as much as possible. So the rippling air mattress came yesterday!! It has many crosswise sections of air filled tubes that slightly inflate and deflate back and forth from the top to the bottom of the bed and back. For getting in and out of the bed, it can also be set to inflate completely for a firm surface. I think this will actually help, and may even keep him from getting any more sore places on his bottom.

He still has times when he doesn't know whose house he's in, but the hallucinations are not as disturbing to him as they were. His strength is returning, and with the improved appetite, he feels more like walking. So, a week that started as the worst yet has prospects of ending as one of the better ones. I'm keeping my fingers crossed!!

We Have BOOTIES!!

Finally, a good two weeks or more after I first asked for them, the nurse brought the sheepskin looking booties today. If I had gotten them when I asked, his heel would not have looked so bad, and may not have even blistered at all. She also brought the seat cushion for his chair. His bottom is also getting worse, so this will help considerably.

We spent the whole morning trying to achieve a bowel movement. I've been giving Daddy 2 stool softeners with each meal, plus a Senna laxative tablet each night. He hadn't been since last Wednesday, so this morning we went all out to get some results. Prune juice for breakfast, plus another laxative tablet. It's quite an involved process to get him in the bathroom now, but DH helped me this morning. Daddy still couldn't go. So, I used a suppository. We waited, but still nothing.

By the time we had him ready to move to his chair in the living room, everything decided to start working. So, we went through the routine to get him back in the bathroom, take care of that, and then put him on the bed, so I could get him really clean and put ointment back on his sores. Then, we got him back up and into his chair. By the time we did all that, the nurse came. His chair is a recliner, which he would not use before. But we had so much trouble keeping him comfortable in his chair or the wheelchair Saturday, that we thought it was worth a try. By propping his calves up with two pillows, we finally got his legs high enough for his heels to hang without touching anything. And he's comfortable. He immediately fell asleep, bless his heart.

He's not the only one who's worn out! DH had to take over and sit with him while we were waiting for him to finish in the bathroom, because my stomach started churning and cramping. I not only had diarrhea, but I came very close to throwing up. I think it was just from my nerves, but this would never have happened before I had Parkinson's. It makes me so very nervous to work with him, because I'm so slow at everything I do. I'm afraid he's going to fall while I'm trying to get his pants down. In fact, I'm afraid he's going to fall every time I do anything with him. Really, I'm just afraid, period. Even though I know exactly what I want to do, I have no confidence that I will be able to actually do it, anymore.

DH and I have eaten lunch, but we've left Daddy sleeping for now, as he's exhausted. DH is asleep sitting on the sofa, and I'm blogging and resting. We're all three worn out from the morning's doings. LOL

This nurse says the other nurse will bring the air mattress when she comes later in the week, which should help his bottom a good bit.

I managed to control my temper while the nurse was here, as I didn't see that anything useful would come from letting her know just how mad at her I was. My DH knew I was mad, but I don't think she ever realized it. I hope not, as we have to work with her.

But if we have another situation develop like this one, I doubt if I will be so restrained.

Daddy Stayed in the Bed All Day

Today was Frances' day to stay with Daddy, so we could go to church. As it turned out, I was just too tired to go, and stayed home and slept until DH returned from church.

Frances called before he left for church, though, to say she wasn't comfortable trying to get Daddy out of the bed. She had tried, and he was just too weak. So, she sat with him in the bedroom, changing his position, feeding him, changing Depends, all day long.

When we took over this afternoon, I had him go through some mild therapy exercises, just to see how stiff he was from being in the bed. He seemed to be moving OK, and said he didn't hurt anywhere. His heels are hanging off a pillow, so they're taken care of. His bottom looks no different than it did, certainly no worse. He even let me feed him oatmeal tonight. That's the first time I've fed my Daddy a meal, since he had his pacemaker surgery over 15 years ago. He surprised me by being willing to let me do it. Since there really wasn't anything for two people to do, once he had fixed the oatmeal, I sent DH home early tonight. No need for him to sit in this hot house if he doesn't need to.

We listened to the Super Bowl on the radio, and Daddy stayed awake until it was over - way past his usual bedtime. He made several remarks about not being able to find his bed, so I went through the whole explanation of which bedroom he was in, and this is his house, the whole thing that gets repeated night after night. By the time the game was over, he seemed content that he knew where he was, and promptly went to sleep.

It's after 10, and I'm beginning to yawn now, so I'll finish up and try to get some more sleep. Hopefully, tomorrow, Daddy will feel like getting up, and will be strong enough to do it.

For the Want of a Nail .....

It's pitiful the domino effect one small problem can have on the well being of an elderly person.

From the start of putting Daddy in the hospital bed, he has been very touchy on his left heel when I'm getting him dressed in the mornings. I had already, some time ago, asked for help keeping his heels in good condition, as I had noticed some splotchy areas there. The nurse said she would order booties. When they didn't bring them, I asked the next nurse I saw about them, and she said she would take care of it. Well, the booties didn't come, and yesterday morning Daddy had a water blister on the bottom of that left heel that is huge.

Even though it was Saturday, I called the after hours Hospice number, telling them about his heel. The nurse had a call to make in the opposite direction from us, but she said she would see him sometime that day. Sure enough, she did come about lunchtime.

When she measured the blister, it was 2" by 3"!! His whole heel has broken down!! No wonder it was hurting. She used an ointment on it, padded it with gauze, wrapped his foot in Coban, and reminded me to hang his heels off a pillow and not let them touch anything. She said I did the right thing calling, and she thought it had been caught soon enough that it would heal quickly. Of course, Daddy is diabetic, so quickly is a relative term.

I'm just sick about that heel. I've been going to his house to fix breakfast and put on his shoes and socks for years now. I always checked his feet and made sure I smoothed out any wrinkles in his socks, before putting on his shoes. Now, too many people are dressing him, and I have no idea how the blister got started.

So, for want of a nail, the battle was lost. Hopefully, our battle is not lost, but it certainly has been put in jeopardy! Because of the huge bandage on his foot, he can't wear his shoes. Because he can't wear shoes, he's not as sure footed when he tries to stand up. Because he's having trouble standing or walking, he had to stay in the wheelchair almost all day long. Because he's in the wheelchair and not walking to the bathroom, he's not getting any exercise, so his legs are even weaker. Because he's sitting almost constantly, with his legs up, the pressure on his bottom is greater, so the sores on his bottom are getting worse!

The nurse was obviously concerned that I had not gotten the booties when I asked for them. She said she would see to it that the medical supply company brought out the seat cushion, booties, and an air mattress as soon as possible. We'll see.

This is exactly why I don't want to put him in a nursing home. If his skin has broken down here, with me asking several times for the equipment that would have prevented it, how much longer would they have waited to deal with his skin, with no one around to remind them??

We spent the day yesterday trying to keep him as comfortable as we could, what with his bottom sore and his foot sore.

This was not the Hospice we had used with Mama and Pop, but the one the doctor's office made arrangements with. I'm seriously considering switching Hospices. That means returning all the equipment and getting another set from the Hospice we liked, but at this rate, it will be worth it!! It all depends on how long it takes them to get this equipment to us this week. If it's delayed, they're fired, no matter how much of a hassle it is!!

What a Difference the Right Equipment Makes!!

This morning was my first chance to take care of Daddy from a hospital bed that worked properly. It made quite a difference, although I still had problems getting him to follow my directions. I was able to change him out of the night Depends, clean him up, and get fresh ones on, put on socks, pants part way, and shoes, before I ever let the bed down for him to sit up. That is a BIG help. He rolled away from me, following my directions perfectly, but when it came time to roll toward me, he kept trying to climb over the rail!! DH heard me struggling to get his legs back in, and came and helped me get him on his side, so I could finish the Depends. Next time, I'll put his trousers on around his ankles first, so it will kind of "hog tie" him. LOL

Having the right equipment does make all the difference in the world when care giving. I've been very concerned about Ruth and Mick, after seeing the terrible bruises he gets from a wheelchair that doesn't fit his needs properly. I wrote The Voltage Gate and A Hearty Life, thinking that they might have some scientist friends who could help her adapt the wheelchair better. If you know anyone who might be able to help her, I sure would appreciate you sending them the link to her post.

Anyway, we continue to take one day at a time, even one hour at a time, with Daddy, just trying to keep him as comfortable and as mobile as we possibly can.

Things Have Settled Down Again

When I posted a couple of days ago, things were looking pretty grim with Daddy. But each time I've not been able to get him to eat much, I've been giving him his medicine with Boost to drink, instead of water. So, he's a little stronger now than he was.

Frances stayed with him yesterday, so we could go to Sunday School and church, and have a little free time to ourselves after lunch. Daddy didn't want to get out of the bed before I left, but Frances said she'd deal with whatever needed to be done. Thank goodness we have someone with him I can actually trust him with. We are very fortunate.

We were pleased to find, when we returned, that he was lucid and had been using the walker all day. DH had a deacon's meeting to go to, so I took care of supper and putting him to bed all by myself. I did take him to the bedroom in the wheelchair, because he had gone sound asleep in his chair already and he seemed woozy. But I didn't have a problem making the transfer, using the walker to make the change, instead of having him hold onto me.

This morning was not quite as normal as I would have hoped, but it wasn't too bad. The hallucinations have been mild today, and he's walked most of the day. I did use the wheelchair to take him to breakfast, as I had him by myself again. DH had to travel to a family funeral.

We get the hospital bed this afternoon, so that will make a lot of things easier for us. And Daddy surprised me about that. He protested when he realized we had ordered it, but I was able to get him to understand that we had followed his wishes on that as long as we could. He hasn't fussed about it since. That may change when he actually has to sleep in it, but I'll deal with that when and if it happens.

Through all of this, the Zelepar has been working just fine. It was definitely the strep throat that kept it from working before. I'm still on the antibiotic, and my throat's still sore sometimes, but I think the strep is gone finally.

So, all in all I'd say things have settled down again, but I know how quickly that can change. I'll just be thankful for now and let next take care of itself!!

Hallucinations

Daddy has been hallucinating for the last several days off and on. At times he doesn't realize he is at home, and starts wanting to know when we're going home. Although he is blind, I've noticed him looking around at things with this wide eyed expression on his face. He's obviously seeing things that aren't there. And, he's talking about them, too! Normally, Daddy is a very quiet person, but he's been chatting away about these children playing in the living room and the trucks in the bedroom. No amount of reassuring him that it's not real will convince him of it. Up until yesterday, the hallucinations seemed harmless enough, but were a definite sign that something had made a down turn.

Yesterday morning was the worst I've had yet with Daddy. Thank goodness my DH got to the house just about the time I was going to get him up. I found him lying astraddle of the bed, with legs partway off, having made an unsuccessful attempt to get himself out of bed. His bottom was much too close to the edge of the mattress to have him sit up, so we had to try to maneuver him back in the bed. All the while, he's loudly protesting that the trucks are coming into the bedroom, and he's struggling against us, trying to get up. We finally managed to get him seated at the foot of the mattress with enough spare room to be reasonably safe.

The question was, now that we had him there, how were we going to get him up, when he was exhausted. Thank goodness I've had prior experiences I could fall back on! We ended up taking the arm off the wheelchair and making a difficult sideways transfer of about 12 inches!! He's just a dead weight and doesn't help at all. By the time we got him in the chair, I was already worn out. Thank goodness I had taken my Zelepar earlier, before he got up!!

By the hardest, we managed to get him partially dressed, but there was no way to pull up his pants or change him out of his night Depends into fresh ones. With one more gigantic effort, we managed to lift him up enough to get the wet Depends off and a dry one under him, partially taped up on the sides. That was just going to have to do for then. DH rolled him into the kitchen, with his trousers down at his ankles, and I covered him up the best I could.

His kitchen table is too low to let the arms of the wheelchair go under it, so he tried to eat breakfast farther away from the table than he's used to. He was still hallucinating and talking about the hole in his bedroom wall where the trucks had come through. He ate very little, but he did let me feed him a few bites. Luckily, we have the Rhoho cushion that Mama had after she broke her hip. Sitting on that is like sitting on air, and it's designed to prevent pressure sores. So we stood him up one last time for the day, and managed to get it under him. We ended up leaving him in the wheelchair all day, for safety's sake.

DH stayed longer than usual last night, so he could help me get Daddy to bed. It was not easy, but it was nowhere near as bad as getting him out had been.

Frances came today, and thank goodness Daddy was lucid this morning! Since I knew what to expect today, she and I changed the Depends and got him partially dressed before we ever let him get up. That made things a lot simpler. We stuck around and helped with him until she had him ready for breakfast. Then we got out of there for our Date Day. We both really needed to be away from all that nervous tension for awhile.

He's still really weak tonight, but he's beginning to understand a little of what is expected of him when he needs to make a transfer. That helps a lot.

So I write this tonight, not knowing who I will deal with tomorrow - my Daddy, or the fellow with all the trucks and children. I'll find out in the morning, won't I?

Gee - I'm Now a "Hero in Parkinson's Disease"

One of the blogs I have found useful to read from time to time is My Parkinson's Info. It is an informational site, but they also ask PWP to answer interview questions. Matt was kind enough to ask me to tell about what it was like being a caregiver with Parkinson's Disease.

So I now have an Interview on My Parkinson's Info!

Strange Things Are Hapnin'

I went to my Neurologist last Friday, and I explained to him all that had been going on the whole time I was trying out the Zelepar. He agreed that the medicine had not received a fair chance at working. So, he gave me a prescription for it, with instructions to use if for a month. If I was not pleased with the way it relieved my symptoms, I could then add the Requip I have taken before back to my schedule. Now that my digestive system is behaving, I told him I thought I could handle the Requip just fine.

Of course, being the little town that ours is, our Pharmacy didn't have the Zelepar in stock. He has to order unusual medicines, but they come the next business day, and that works OK, most of the time. Of course this was Friday afternoon, when we dropped off the prescription, so I was without all weekend. I did the only thing I knew to do - I used the Requip I already had. My tummy didn't complain a bit, either.

My throat is still irritated, and I finished the antibiotic today, so I'm thinking I'll see if the nurse will swab my throat again, or just refill the prescription. I'm not convinced that the strep is gone, and I can't afford a relapse. I had rheumatic fever as a baby, so my heart is particularly vulnerable to strep infections.

I'm feeling good about the medicines Dr. S. has me on for the Parkinson's now, and I'm sure my GP will take care of my throat, so things are settling down for me.

It's just as well, because Daddy continues to decline. His arm is much better, thanks to the arm band, but his mind, and his body in general, continue to go down hill. We've had some difficulty all along getting his bowels to move, as one might expect from a 101 year old. I was using the glycerin suppositories I had to help him go, plus he is on Colace as a stool softener. The last time I used the suppository, it didn't help, which I thought was strange. So, I figured, since I use two of them, I'd use two on him. To my surprise, I discovered the first suppository still in place - not melted in the least! His body temp is so low that it didn't dissolve!!

So, even though I had been trying to put it off, I felt I had to call the Hospice Nurse, and request help giving him an enema. The enema was an ordeal for him, but it helped. That was yesterday. Today, his strength is noticeably less, and his confusion is noticeably more. His mind and body just can't cope with any kind of assault now, even if it's for his own good. Going to the Orthopedist sent him downhill, and the enema just pushed him that much further.

I can only pray that I will do well on the Zelepar, or the Zelepar and Requip combination, as I think it's clear that Daddy has taken a definite turn for the worse. In God's good time, this will all work out. I just have to take one step at a time, and leave the end results to Him.

Update on Daddy

We took Daddy to the Orthopedist Tuesday, with help from our paid care giver, Frances. That was money well spent, as he still is extremely difficult to transfer from the wheelchair to the car and back. Also, there was so much paperwork to fill out that they were ready to take him downstairs for X-rays before I was through with it all. Thank goodness Frances was there to take him, as DH had gone to the store while we were at the doctor's.

Daddy fell the day after Thanksgiving, but the severe pain and stiffness in his right arm didn't show up until Jan. 3. We figured it was due to using the walker and from putting so much pressure on his arms when he was getting up and down from chairs.

Well, that probably is the reason the pain started later, but it turns out that he has a small chip of the bone at his elbow! Thank goodness the Orthopedist did not put him in a sling. Instead, he's having us put one of those tennis elbow type braces below his elbow. It's supposed to take the pressure off the tendon that connects to the end of his elbow. I tried it the first day under his long sleeved shirt, but by evening his arm and hand were swollen, and it was all I could do the get to the brace from under his sleeve. I've been putting it on the outside of his shirt ever since, and it seems to work just as well. I didn't even have to adjust it last night, as his arm was not so swollen.

The brace seems to be helping, thank goodness. We go back to see Dr. J in a month to see how he's progressing.

So, the arm is better. I wish I could leave it at that. But that would be only half the story. The stress of trying to get him in and out of the car, plus all the strange goings on with the X-rays, a strange doctor, and a strange place, and his pain on top of all that, have left Daddy confused. He has said several things that made it clear that he no longer thinks he's at home. He's also been talking about those children who are making all the noise and running around. Maybe he's had another small stroke. Maybe his depression is worse. I don't know. I just know that he is altered.

We continue to take one step forward and two back, it seems.

Can I Keep Daddy in His Own Home Any Longer?

It looks like it's time to consider a Nursing Home for Daddy, something I never wanted, and he certainly won't want.

The last couple of weeks have been busy ones, as far as taking care of my Daddy is concerned. He woke up two weeks ago with his right arm in such pain and so stiff that he's been having to eat breakfast left handed. He can't even get the spoon to his mouth with his right hand. The Hospice nurse came and checked him out, but she couldn't find anything in particular going on. She did get a prescription for Ibuprofen, so I've been alternating every four hours with the Motrin and Extra Strength Tylenol. By lunch time his arm has been better, but it starts all over the next day, just as bad as the day before.

With his arm like that, he's having more difficulty getting out of his chair and the bed. Eating has been very frustrating for him, and he's having more trouble using the walker. I've been trying to help him get up and down, to give his arm a chance to heal, whatever has been wrong with it.

Day before yesterday, the nurse looked at it again and was concerned about a good bit of fluid build up around the elbow and upper arm. I knew his hand was swollen, but I hadn't realized the upper arm was larger, too. Anyway, she made an appointment for us to see his GP, Dr. M., in case it was a hairline fracture from the original fall, or something like that.

I didn't realize until yesterday just how much worse Daddy is than he was when he first fell. Trying to move him from the chair to the wheelchair, and then from the wheelchair to the car, was just about impossible. I wore myself out trying to do it. Luckily, Frances, our sitter, was there to help move him into the car, and she was panting by the time he was in. It's so much different than when we took care of Mama and Pop. They were both small people, not weighing more than 100 pounds, and they both cooperated. Daddy is about 160 pounds, and he's a dead weight. To make matters worse, he doesn't trust anybody, so he kept grabbing hold of the car door for dear life, and we had to peel his hands free to get him to hold onto us to maneuver him.

We asked for help at the doctor's office, getting him out and back in, so at least we didn't have to struggle with him there. But then, of course, we had to get him out of the car and back in the wheelchair on our own when we got home. He wasn't any easier to move then than he had been at first.

The whole ordeal was extremely upsetting. The worst part of it was that the doctor no longer has an X-ray machine, so it was more or less a wasted trip. We have to see an Orthopedist next week. That means going through all this again. I did mention to Dr. M. that I had a sore throat, so the nurse swabbed it, and I have strep. So now I'm on antibiotics. At least we accomplished that!

Yesterday's events have forced me to reconsider just how much longer we are going to be able to keep Daddy in his home. I can see that he's fast reaching a point where I won't be strong enough to take care of him. My DH and my Daddy have always had, shall we say, a cool relationship with each other. So DH gets frustrated with him, and Daddy stays mad at DH. My hubby is here for me, and doing a great amount of the work, but he's just not up to the cheek to cheek "dance" it takes to move someone who's not able (or willing) to help. And I've had a lot more practice at it, too. It is a skilled maneuver, but with Daddy, I'm just not strong enough to do it well.

So, I started thinking about Assisted Living homes vs Nursing Homes last night. I really don't think an Assisted Living place would take Daddy, but he's so mentally alert most of the time I hate the idea of a Nursing Home. I don't think I'm going to have a choice, though. We had visited just about every good Nursing Home in this area when we were caring for my mother and father-in-law, so I have a pretty good idea which ones to check for vacancies.

We have an appointment Tuesday with the Orthopedist, and his diagnosis of what's wrong with Daddy's arm will have a lot to do with where we go from there. If he puts Daddy's arm in a sling, we're in a mess. So, we'll get through the next few days as best we can, and go from there.

All this has been happening while I was supposed to be giving the Zelepar a fair trial. Considering how yucky my throat has been the last couple of weeks, and how much more work has been involved in taking care of Daddy, plus the extra stress of seeing him deteriorate, the Zelepar really hasn't gotten a fair trial. I'm not walking as well as I did with the Requip, but my stomach is definitely better. From recent reading I've done, I understand that this is the maximum dose of Zelepar, so that's not likely to improve, unless it's because of the increased stress, or because I had strep, and that effected my walking.

So at the moment, my thoughts are up in the air, with lots of questions, but no clear way to answer them right now.

Tummy Improvement OR Walking Faster?

I've been on the new Zelepar medicine for several days now, and my digestive system is behaving just fine. I don't seem to be getting quite as much help with my gait as I did with the Requip or Sinemet, however, but I'm still on the samples. When I go back to the Neurologist next Friday, it may be that he will order a prescription for a higher dose or more doses, which might make the difference. Anyway, even if the dose stays where it is now, it seems like a reasonable trade off between stomach problems and balance and walking problems. I'd love to walk better, but I can live with it the way it is now, if I have to. It's nice not to spend part of every day miserable, with a hot pad on my tummy!

I said at first the Zelepar didn't taste bitter, however, I'd better amend that evaluation. Yes, it is bitter, but not enough to bother me, anyway. (The trick is to be sure you place it under, not on, the tongue.) It dissolves under my tongue so quickly that it's just a few seconds, and I can swallow it. You're not allowed to drink or eat anything for at least 5 minutes before or after taking it, but my saliva quickly washes the taste away.

We're still staying with my Daddy, which means I spend most of my days and every night in a hot house. We tried to find a compromise temperature for the thermostat, but at 101, he gets too cold, while we're still sweltering. I have noticed that I'm having more trouble with the heat this week, since I've been on the Zelepar, than I was before I started taking it. I'm getting what feels exactly like hot flashes several times a day, and I've been past that stage for some time now. I have read that Parkinson's can mess with the body's regulation of internal temperature, so I guess that's what's happening to me right now. Or is it because of the Zelepar? I really don't know.

I was on Requip before starting the Zelepar. Requip is a dopamine agonist, but Zelepar is an MAO-inhibitor, so they don't attack the PD symptoms the same way. There's big news in the Birmingham News today that a doctor at UAB is close to getting FDA approval for a patch version of a dopamine agonist. That will be good news for me, as the Requip did a better job of improving my balance and walking than it looks like the MAO-inhibitors are going to. I'm all for any PD med that I don't have to swallow!! So this is something else for me to be hopeful about.

It's great to see that there is good news on the horizon for the large number of people who really suffer with this disease. My own symptoms and discomfort level are so mild compared to people who have had Parkinson's for years. I pray that all this new research may bring them relief in the near future, instead of years from now.

My Digestive System Is Behaving! Not So Sure about Us??

It looks like the Gastroenterologist has found the right combination to get my digestive system working again in a manageable way. I haven't had any pain or bloating now for several days, and I've been able to eat some things I wouldn't have dreamed of trying just last week. I still don't have an appetite, but I still need to lose weight, too! So I'll count that as a blessing for right now.

We had our Date Day today, instead of yesterday, because our respite care giver couldn't come yesterday. We had an enjoyable day together, not really doing much, but just relaxing. With my balance as wacky as it is right now, there's not much else we could do.

Daddy, DH, and I had our first big flare up of tempers this evening. It was just a matter of time before it happened. We've been trying to stall it by getting out of the house a couple of days each week, but it was inevitable.

Daddy hates the idea of having anybody in his house, doing things he would normally be doing, or changing his routines. He's been independent too long to take easily to having DH and me here, and certainly to having Frances here two days a week. And he hates not being able to take care of himself any more.

We've understood how he felt, so we've been biting our tongues ever since he fell, as his bitterness shows through in almost everything he says to us. Hopefully this show of temper on all our parts will clear the air for a little while, but that remains to be seen.

So my relaxing day had a somewhat dramatic end, but as thick as the tension has been around here, it may well have been for the best in the long run. I can only hope so.

Tapering Off Requip

When I went to my Neurologist last Tuesday, we decided I would stop taking the Requip, since it was probably the cause of all my stomach problems, other than the PD itself. Also, it was the likely culprit for my hair loss. So, Dr. S. told me to taper off the Requip before I changed over to the samples of Zelepar he gave me. That meant last week I only had two pills a day, instead of the usual three. Starting Tuesday of this week, I've only been taking one a day.

Dopamine is the brain chemical that controls muscle movement, and that's the one that people with Parkinson's no longer make enough of. Requip tricks the brain into accepting the chemical in it as a substitute for the dopamine, so it's called a dopamine agonist. Now that I'm down to one pill a day, I can really tell it! My balance is terrible, and my walking is stilted and jerky.

As long as DH can take over the care giving tasks I'm not up to, I'll continue to do as much as I can to help Daddy. We've only got to make it until next Wednesday, and then I can start taking the new medicine. Zelepar, a special form of the medicine called Selegiline, is a different type of Parkinson's medicine entirely. It is an MAO-inhibitor. I've read what that means a dozen times now, but I still don't understand it well enough to put it in my own words LOL.

The reason Dr. S. is trying this particular prescription is that it dissolves on the tongue and does not go through my digestive system. It goes straight into the blood stream. With the improvement in stomach comfort that I'm seeing from the Miralax and glycerin suppository combination, I'm hoping this new medicine will be the perfect one for me for the time being.

I do know that at some point I will have to go back to taking Sinemet, which was the first medicine I took. It nauseated me, too, but I'll cross that bridge when I get to it, because there is a patch form of it in drug trials now.

So for the next few days I'll be weaving and lurching around here like I'm drunk, but I can put up with it, knowing there's something new to try just days away. I am ever thankful to God that there are so many researchers working to find new ways of fighting the symptoms of this disease, working on ways to slow its progress down, and ultimately to cure it.

A Quiet Christmas

We had a very quiet, uneventful Christmas today. Meals on Wheels always gives Daddy a Christmas present, but for some reason this year there were several. So we made a big deal of having him open them after breakfast. As usual, he didn't really show any emotion one way or the other, but that's just the way he is. DH had been recording all the Christmas TV programs he could find, so we watched the Mormon Tabernacle Choir, a fantastic bell choir, and a few other choirs today. Daddy slept through most of it. Both our DD's called, and Daddy talked to them a little. We got on the extensions and chatted with them for awhile, which helped me feel a good bit less lonely.

DH had bought the makings of a really nice Christmas dinner, so he and I put that together, plus some leftover cornbread and turnip greens Frances had made Friday. It was a really good lunch. We both nearly choked when Daddy told our DD's that we had leftovers for lunch!! He doesn't have a clue that he hurts our feelings with his lack of appreciation for anything we try to do for him. I should know better, as he's always been that way. I was always Daddy's little girl, always trying to please him, and never succeeding. I finally figured out that the problem was his, not mine, but even now, it still stings sometimes.

The Miralax is finally beginning to take effect, although I still spent a good part of the afternoon with the hot pad on my tummy, trying to quell the discomfort. Hopefully, in the next few days, I'll really begin to feel better.

All in all, it was not nearly as bad a day as I was expecting it to be, but certainly not as enjoyable a day as it usually is. Talking with our daughters and being with my wonderful hubby all day today made a huge difference for me. I also enjoyed emailing and blogging back and forth with several really great cyber-friends, who have a lot to do with me being able to stay upbeat most days. For that I am truly grateful.

So, yes, it was a quiet Christmas. We listened to a lot of beautiful music. We shared each other's company. We talked with family and chatted with friends. It was a good day, after all. Merry Christmas!

Christmas Eve

I continue on the full regimen that the Gastroenterologist has me on, so far with little success. I did manage to eat a baked sweet potato last night without any pain afterwards, so I consider that an improvement, anyway. They are full of vitamins and fiber, so they make a good small meal for me right now.

We went on our Date Day Friday and bought a few things at the only Estate Sale open in the whole city! By the time we got there they weren't crowded, and much of the stuff had been sold, but we did manage to find a few little things that I think will sell well. Plus, I have a thing for real hankies. I can't stand to use Kleenex tissue! I like a real, soft, cloth handkerchief on my tender nose. So we're always on the lookout at such sales for old hankies, and we found what appear to be some brand new ones. I was glad to get them.

We piddled around a few hours at the nearest Thrift Store and at Walmart, ate a grilled chicken sandwich at Chic Filet, and then we went to see The Nativity Story movie. I thoroughly enjoyed it. The scenery and the detail of all the activities going on in the background are supposed to be very authentic to the time period, so I found that part fascinating. As to the plot, they did a good job of presenting the whole thing in a believable way, clearly portraying the disdain of, and even shunning by, their neighbors of this young couple who had "not waited the alloted time before having sex."

The harsh journey to Bethlehem was dramatic, but maybe a little too long time wise, but certainly worth it for the story line. It was a relaxing few hours that helped to emphasize the true meaning of Christmas. I was very glad we went to see it.

Being able to look forward to these times to "escape" care giving have been a Godsend. It's funny in a way. The lady who stays with Daddy for us lives with her own elderly mother. She's always glad to be able to get away from her for awhile! LOL! And here we are, paying her so we can get away from Daddy for awhile. But Daddy never asks her to do anything. As soon as she's gone, he starts in with his list of things for us to do. It's really funny, as long as we're rested and in good humor.

So, here I am, in the early hours of Christmas Eve morning, writing this post. Frances will be coming this morning, so I will get to go to church today, thank goodness. I need that right now. I've missed my church family lately more than I realized, but we've always been regular attenders, and I've been out so much this year with my own illness, and now Daddy's, that I'm losing my connection to them. God meant for us to assemble ourselves together, and not to worship alone all the time.

So I'm looking forward to seeing my friends in Sunday School and worshiping together in Church today.

May God shower his blessings on each of you through this coming year, and may the Glory of the Christ Child shine all around you. Amen.

I've Lost Christmas!

Ya know how sometimes it's too warm when you should be Christmas shopping, and it's just hard to get in the mood? Well, something like that has happened to me this year. First, we have had shirt sleeve weather, which doesn't help the situation any, but that's not really the problem. It just doesn't feel like Christmas to me this year.

We're not going to see either of our daughters or their families this weekend. We didn't decorate our house, because we haven't been there enough to do it, nor to see it if we had. We put a tiny tree up in Daddy's living room, but that's it. Our only Christmas shopping was over the internet, so we haven't been in any of the crowds, nor had the fun of looking for all the little stocking stuffer unique oddities that our grown kids and grandkids look forward to. I've even missed all the Christmas programs at church.

Oh, we've had the songs on the radio, but they start that way too early, so it loses its effect. My Sunday School Class did come by here on the way to their Christmas party and sing Christmas carols to Daddy. That was about as close to feeling like it really was Christmas as I have felt. In the vacuum of taking care of Daddy and trying to take care of myself, it just doesn't feel magical this year. And that's very depressing. There, I've said it out loud. Yes, I am depressed this Christmas, a feeling I have never experienced before on such a joyous holiday.

I never meant, when I started this blog, for it to turn into a place to wallow in self pity, but it sure seems more and more that's all I'm doing. I guess I could make excuses and call it therapeutic LOL. All I wanted to do was keep a running record of what it was like from day to day, for my own sake, and possibly to benefit someone else going through similar experiences with Parkinson's.

I was also hoping that by posting regularly, my keywords would attract other PWP through the Search Engines, and I could enjoy some conversations with other people going through the same things I am. That hasn't happened, either. Maybe it will in time, but right now the Page Rank of this blog is still zero. It's hard to move up through the Google ranks, and it takes time and patience.

So we take one day at a time, each one feeling pretty much like the day before, expecting the next to feel pretty much like today. It's a care giving rut that leaves no end in sight, because only God knows the outcome of all this. All we can do is our best from moment to moment.

So I'm Stopping the Requip

I went to my Neurologist today, and we discussed my digestive problems, hair loss LOL, and insomnia. His solution was to taper off the Requip until I have quit taking it completely and see what happens to my stomach problems. He also gave me a prescription for a time release version of Ambien. And, of course, if it was the Requip that was causing the hair loss, stopping the Requip will take care of that situation.

I told him about writing to the National Parkinson's Foundation "Ask the Doctor" site, and what that doctor suggested. So he's given me some samples of the medicine the NPF doctor suggested I try. I'm not supposed to use it until I've completely stopped the Requip, if I can possibly stand it. But I explained we were taking care of my Daddy, and I might not be able to put up with my impaired walking that long. He wants me to try, so he can get a fair assessment of how the new medicine works, but he does understand our situation.

He gave me samples of Zelepar, one of the brand names of Selegiline. It dissolves on the tongue, so it does not go through the digestive system at all, but straight into the blood stream. I have high hopes for this medicine. It is also a different type of medicine than I have had before. This one is an MAO inhibitor. I'll have to do some research to fully understand what that means.

I am very thankful that all the research over the last few years means there are a lot more different types of medicines for him to try on me than there used to be for Parkinson's. None of them slow down the disease, or do anything at all to cure it, but they do help with the symptoms. For now, that is a blessing. Hopefully, in my lifetime, they will find ways of at least slowing the disease down. And who knows, maybe they'll even find a cure.

Doctor Recognized My Symptoms

I went to my Gastroenterologist today, and I went into some detail about the stomach and general digestive problems I've been having for some time now. He recognized what I was describing, and even had a worksheet of instructions already printed up with how to deal with my set of symptoms. He definitely said this problem was caused by my Parkinson's medicine, Requip, and not by the Parkinson's Disease, itself.

I was correct in my guess that my digestive system had basically quit moving things along, but apparently wrong as to the reason, as I thought it was the PD causing it.

Anyway, he assures me I will be feeling much better in a few days, and I'm to call his nurse Monday with my progress report. Hopefully, I will have a good report for her.

Daddy woke up this morning barely able to balance well enough to sit on the side of the bed without falling back over. It was much harder than usual to get him dressed, and I was glad when DH got there, so he could help me walk him to the kitchen for breakfast. By then, Frances had gotten there, and we cautioned her that he was very unsteady. When we got back this evening, she said whatever was going on earlier had passed by mid morning, and the rest of the day was normal. I don't know if he had another little stroke in the night or not, but he sure was different for awhile this morning.

I'm very thankful I have someone I can leave Daddy with that I have confidence in. Otherwise, I probably would have postponed my own appointment today, and that would not have done either one of us much good.

Seeing My Doctors Sooner

I was quite surprised to not only be able to get an appointment with my Gastroenterologist this Friday, but I was also able to get one with my Neurologist next Tuesday. The Neurologist appointment really surprised me, as I know how long I've had to wait before to get one. I must have lucked up on one somebody had canceled, but I'm thankful for it, regardless of how I got it.

I'm hoping that, between the two appointments, a definite solution to my stomach problems can be found, and I also need to have a different sleep aide prescription besides Ambien.

The Friday appointment won't be a problem, because Frances comes on Friday's anyway, but I'm just keeping my fingers crossed that she can come on Tuesday. She's out of town right now, so I'll have to call tomorrow to work out the details. If she can't, then I'll have to start calling church members to find somebody who can sit with Daddy for us.

I want to thank you, friends, who put up with my daily moans and groans, to give me an encouraging word. I really need that encouragement right now. Our situation with Daddy has settled into pretty much of a routine, but there are still a lot of questions about what the future will hold. It's hard to imagine that he will recuperate from this episode and be able to live by himself again. But I keep reminding myself that he's "graduated" from Hospice once before. He really is amazing! Cantankerous, but amazing!!!

Another Day Goes By

Thank goodness the headache was gone yesterday. I can't say the same for the cramping tummy, though. I started out OK enough, but Daddy had a bathroom accident, and cleaning him up really unsettled my stomach. I managed pretty well while the cleaning was being done, holding my breath a time or two, but once everything should have been through with, then I started feeling nauseated. I spent the rest of the day with the hot pad on my stomach and abdomen, trying to ease the cramping.

I've checked my blood pressure, too, thinking that might have something to do with how bad I've been feeling. Sometimes it's been too high, like 144 over 80, but most of the time it's been just fine. I keep getting these fleeting feelings of lightheadedness or dizziness, which could just be due to tiredness, since the BP is usually OK.

At least I did accomplish something yesterday afternoon. DH wanted me to go to the house for a couple of hours, just to get away, but I really didn't feel good enough to want to move. So I told him to just pretend I wasn't here, and I'd rest where I was. So, while he took care of Daddy, I did the research and wrote the descriptions for 5 baby toys to put on eBay just as soon as I can get the photographs taken.

I'm looking forward to Francis coming this morning to give me some more time away from Daddy. That should help. If my tummy seems OK after breakfast, I'll go to church. If I'm still uncomfortable, I'll probably just stay home and rest. Whatever I do, being at home or at church and away from the care giving responsibility momentarily will do me good.

Hopefully, I'll feel good enough to get the photos of the toys done, so we'll have some items on auction this week. This should have been our busy time online, but under the circumstances, there was just no way to make that a priority. After all, it's only a hobby, but it's a hobby that gives me a lot of pleasure, and I need that release right now, too. So I have to balance my time and energy to keep myself as calm and relaxed as possible and still be helpful with Daddy. It's not fair to DH for him to end up doing everything, particularly since Daddy is such a pain to deal with most of the time.

If anybody's BP is high, it would be my DH's, who finds himself constantly stifling the urge to come back with an equally sharp remark, after Daddy has said something particularly insensitive or controlling. He's always been that way, although I know he loves me, and for the most part I can let it go in one ear and out the other. But DH is overprotective of me, and Daddy makes him mad now.

We Went on a Date Today!!

Thanks to being able to hire the same sitter we had used several years ago, when we were taking care of my mother and father in law, we were able to go out on our Date Day today! It was wonderful to get out of the house and know that Daddy would be well taken care of.

I set a fairly light itinerary for the day, since I knew I was so tired, but I did want to at least go to a few Estate Sales. We had very good luck at one of them, since we caught them at that stage when they just wanted to get rid of everything. That doesn't happen very often, but when we're lucky enough to find a real sale like that, we usually leave with some real bargains. Today was no exception. Now all I have to do (HA!) is find the time to photograph everything we bought and write up the descriptions, so we can put them up for sale on eBay.

I managed to take several doses of Tylenol during the day without DH realizing it, as I didn't want him to know that I was so achy. I was determined that our day together not be spoiled. I only used the cane at one house, because the driveway was very steep, but my walking was stiff and awkward feeling all day today. That's a sure sign of just how tired I am.

I had a bad headache today, too, something I rarely have any more. I suspect that's because I'm still not getting enough sleep. I've already had my night medicine and a sleeping pill, as I write this, and I plan to go to sleep as soon as I finish this post. I'm really not having that much trouble going to sleep. It's staying asleep that's giving me trouble. And, of course, my tummy couldn't get through the day without putting up a fuss. I was extra careful to eat bland foods, but here I sit, with the hot pad across my middle, trying to make things feel better.

We've Hired a Respite Aide!!

I talked to Daddy yesterday about me needing some rest and a chance to settle my nerves and my stomach, and the fact that I had a doctor's appointment coming up that would require finding someone to stay with him that day. He was agreeable to me trying to get the lady who had stayed at the house when I needed relief with Mama. I was a little surprised he agreed to it so quickly, but very glad he did.

So, I left a message for her to call, and she and I made some arrangements last night. She's going to spend all day on Friday and part of the day on Sunday with Daddy, so DH and I can get completely away from the care giving responsibilities for just a little while. That will be good for us both, but particularly for me, I think. It also means we can go back to going to the yard sales and Estate Sales and having our Date Day again. I've really missed that. And I can go to at least Sunday School, and probably church, too.

Thank goodness Daddy has never been one to spend a lot of money, so we should be able to take care of the respite care costs without a problem. I really feel for those care givers who are not able to pay anyone to give themselves a break every once in awhile. I hope for their sakes that they have family nearby who can spell them. Since we don't have family near, this is our best choice. She's already used to Daddy, and he's already used to her, and we trust her. We couldn't ask for a better combination.

Frances was so excited to hear from us, being the Christmas season, and she was between jobs. She was more than happy to take part time work, under the circumstances. I told her we'd understand if she found full time employment, as long as she kept her obligation for my Dec. 20th appointment. She agreed. So a salary was agreed on, and she will be at Daddy's at 7:00AM this Friday!!

Muddling Through a Rough Day

Well, it was good while it lasted, but the Ambien didn't keep me asleep last night or the night before. I had a particularly rough day with Daddy yesterday, too, so the sleep would have been helpful. Daddy was way over in the middle of his Queen sized bed and couldn't seem to get up yesterday. I tried helping him get into position to sit up, and even pulled on him some, but he sat up several times and fell back over each time. I called DH to come up and help early, which he did. By the time he arrived, I'd finally gotten him to sit on the side of the bed, and I'd managed to change him out of his wet night things. But I sure wasn't going to try to help him walk up the hall to the living room, not as worn out as I already was, and as weak as he was.

We worked together to finish getting him dressed and get breakfast on the table, and afterwards we took him to the toilet, because he hadn't had a bowel movement in several days. I gave him a Dulcolax the night before and prune juice for breakfast, so it was time to expect results. Nature finally took care of things, but it seemed to wear him out, as he slept in his chair almost all morning.

Without going into any details, I had quite a cleaning to do in the bathroom, and it set off the nausea, just as it has ever since I've been on the PD meds. I tried all day long to relax, take some gas pills and antacids, but nothing would settle my stomach. It really didn't stop hurting and cramping on me until about bedtime. I blamed a lot of it on tasting the pork and beans at lunch, but my tummy was already tender before that.

Let's face it. Care giving involves dealing with some less than pleasant bodily functions. We dealt with them when our children were babies, and we deal with them again when our parent's bodies return to the state of babies. There are times in life when such tasks are easier to deal with than others, I guess, because this is certainly not one of my better times. DH isn't very good in this particular department, either, although he's improving out of necessity, God love him. I took care of all this sort of thing with my mother and his Dad, but now he's having to help, and he's doing his very best to survive it. He's from the generation that didn't even change diapers, either, so he doesn't even have that experience to fall back on. Under the circumstances, he's doing fantastic. I can't brag on him enough.

I can't help but wonder if it has occurred to him that he's getting the practice he will need to take care of me someday, hopefully way off in the future. It has certainly occurred to me!

Ahhh To Sleep, Perchance to Dream

Thank goodness for Ambien. I called my Neurologist's nurse yesterday and explained the situation with Daddy. She called in the prescription, and I had a good night's sleep last night, for the first time in a week. Whew!! That felt good.

It will take me a few days to get over being so tired, I expect, but getting a good night's sleep will make a world of difference in what I can accomplish without being totally exhausted. Maybe I can even get back to practicing my Tai Chi in Daddy's living room. After going to all that trouble to learn it again, I sure don't want to forget it. And it's good for my balance and stamina, too.

I've been reading some articles lately that say Pilates is good for PWP (people with Parkinson's), so that may be the next thing I look into. I haven't been able to figure out from what I've read if these were specially modified Pilates classes or not. Of course, it would make a big difference if they were. Speaking of PWP, I've also found that Parkinson's folks call themselves Parkies. Ain't that cute? So I'm a PWP and a Parkie now.

One of the Hospice people tried unsuccessfully several times yesterday afternoon to call us from her cell phone. We live in the middle of nowhere, as far as cell coverage is concerned. "Can you hear me now" just won't work out here. In fact, we had Verizon, and dropped it, because we couldn't get it to work at all LOL. She never did come, and we never did get to talk to her, either.

I'm considering ordering DSL for here, so I don't have to depend on my cell phone while I'm on the computer. Plus, for some reason, the program our church uses for editing our website just won't let me FTP from here on dialup. It works fine at the house on DSL. I'm the church webmaster, and that has to be updated weekly.

As you may be able to tell, I'm in a pretty good mood today. It's been over a week since he fell, and we've developed somewhat of a routine. Now that I know I will be able to sleep, I feel like we can handle whatever comes, between the two of us. We've had plenty of care giving experience, and we have Hospice for support. Our daughters and church family will help where they can, and we have our faith in God to hold us in the good and the bad times. What more could we ask.

Your prayers and kind thoughts are always appreciated, too. The effectual fervent prayer of a righteous man availeth much!

The New Normal is Settling In

We're getting into something of a routine around here, so things are beginning to settle down. DH has been coming up each morning and helping in any way he can, as I get Daddy up and dressed, and we get breakfast going. Hospice has left the wheelchair, a bedside table, an emergency oxygen tank, and one of those oxygen maker machines that plugs in, for when we eventually need it. The bath lady comes out today, too. And his medicine should be coming via FedEx today, also.

We're taking turns going home for a few hours during the day, so I can take care of our Internet business and get packages ready to ship. And I can play with our cat for a bit, too. We live right down the street, so it's not that big a deal.

With all that settling down, my PD symptoms have come under control again, I'm happy to say. My only continuing problem is the lack of sleep, and I've given that long enough to get under control naturally. I'm calling the Neurologist today and see what he can prescribe, as I can't possibly continue at this rate indefinitely.

DH scrubbed and mopped the kitchen floor and brought our good vacuum cleaner up here last night, so we could give the carpets a good cleaning, too. We've got the time to do it, so we'll gradually get the house cleaned up. We've had to neglect it this last year, what with our daughter being in the hospital so much and then me being so sick. Daddy has always vetoed any suggestions at paying someone to come in and clean. Because he's blind, he really doesn't like strangers in the house, and I can understand that.

I'm not sure yet if we'll try to find some part time help to give us a day off or two, since Daddy is so uncomfortable with that. It really depends on how much we need it. We have to take care of ourselves, too, and time away from all this is part of that process.

Care Giving Ain't What It Used to Be

It's only been less than 4 years since we were care givers for my FIL, keeping him at home with the help of Hospice, after he had been in the hospital. He was in a very nice Assisted Living Home before then, because he resented us, probably for taking him out of his home, and we couldn't handle his violent outbursts. They never had any problems with him at the Assisted Living. It was an emotionally draining job, but one we have never regretted doing.

Here I am, just 4 years older, and taking care of Daddy has worn me slap out, thanks to PD. My dear hubby has really had to take up the slack and get much more involved in taking care of my Daddy than he would have had to, if I had not developed Parkinson's Disease. As an example, a couple of days ago my legs stayed wobbly all day long, even after I took my PD meds, and I didn't trust myself to help Daddy walk, so DH had to do it.

First off, the emotional stress of finding him Friday started me off "in the hole" so to speak, and my medicines never have been able to catch up.

Also, I've not been able to get a decent night's sleep at Daddy's. The same recliner that I slept in for several years when I stayed with Mama is no longer that comfortable to me, and that's the only place there is for me to sleep. So, I end up going to sleep early, waking up somewhere around midnight, and spending the rest of the night on the computer. Luckily, I've been dozing quite a bit on the computer during the rest of the night hours. But that's still a poor second to a good night's sleep.

So we decided the best thing to do was to try to get Home Health or Hospice here to give us some help. That's why we took Daddy to the doctor's Monday. Well, Dr. M. followed through, just as I expected him to. The Hospice nurse came today to admit Daddy, and I filled out all kinds of paperwork. They will be sending someone twice a week to help him bathe, a nurse will come by once or twice a week, and they will provide all Depends type products and most of his medicines, too. They're sending a wheelchair Friday, so we can take back the one we borrowed.

Daddy understands that I need the help, so he's being very agreeable to all this. She offered to send a hospital bed, but Daddy's not ready for that yet, so she said just let her know when he needed it. It's not a whole lot of help, but any is better than none, and with his age and all, he's bound to need more and more care from now on. This way, all the routines are in place, and he'll be used to the people coming and going and being in and out of the house. It should certainly make things easier for DH and me, knowing that he's being seen by a nurse each week.

Took Daddy to the Doctor

We did take Daddy to the doctor yesterday afternoon. We borrowed a wheelchair from one of our church friends, and we have a very nice ramp left from when Mama needed it, so that made getting him there less of a hassle. The worst part was the long wait at the doctor's office. We had a 2:00 appointment, but didn't see him until after 3:00, and that's normal. If he weren't so conveniently close to the house, we wouldn't put up with it.

Anyway, he started talking about MRI's and tests on carotids, and I told him that we wouldn't be doing any of that, because we wouldn't be following through with any of the results. That took him aback for a second, and then he stopped and thought about who his patient was, and agreed with me. I told him my concern was if Daddy might be developing pneumonia, which could be dealt with, and could he get us some help from Home Health or Hospice. I told him that the stress and extra work of the last few days had exhausted my Parkinson's meds ability to cope with my symptoms, and that my legs were very wobbly. He agreed that Daddy should qualify for some kind of help, and he would get his office lady on it. He gave Daddy an antibiotic shot and a prescription for more antibiotics, and that was it. He agreed with me that it appeared that he had suffered a small stroke, but was reluctant to start him on Cumadin or any other blood thinner, because of his age (he's 101).

So, it was a long day, and a tiring one, as only waiting in a doctor's office can be tiring, but I think we accomplished what I had hoped we would. This doctor will get him on Hospice if it's possible, and that will be the help we need to keep him in his own home. The one thing Daddy dreads is ending up in the hospital or a nursing home, and it's important to me that I help him have the Quality of Life that he wants, even if it shortens it a little. As long as he has lived, I don't think that's a bad thing. With the extra help, and all the help that my DH is giving, we'll make it through this. We've known it was coming, as it was inevitable, but it's still harder to deal with than we had planned, thanks to the Parkinson's leaving me with so little stamina.

Life's Unexpected Turns

This has certainly been a strange last couple of days for me. It started with my laptop suddenly getting the dreaded Blue Screen of Death over and over, for no apparent reason, right before Thanksgiving. We had all the family coming for dinner, and that meant moving all the eBay stuff out of the guest bedroom, so the grandkids could spend the night. That meant there was no time to work on the ole 'puter, so I had my first taste of computer withdrawal LOL.

I behaved myself, and only worked on the computer in between housework, as I found out very quickly that I have no stamina at all. I used to be able to move all the stuff quite easily, dust and vacuum, and generally straighten the house with no trouble, but not any more. It seemed like I needed to sit down every few minutes and catch my breath. Thank goodness my dear hubby was doing all he could to straighten up the place, and of course he did all the shopping.

Our family helped out a lot on Thanksgiving, instead of just coming and sitting down to the meal, the way they always have before. Our SIL cooked the turkey, and our daughters took care of the deserts, so DH fixed the vegetables, and I didn't have to do anything. It's just as well, as I woke up with those bad stomach cramps and the bloating again on Thanksgiving Day. I spent most of the day with a hot pad on my tummy, ate almost nothing at lunch, but did enjoy having everybody here. Daddy ate almost nothing, and no amount of prodding would get another bite in him. The kids were particularly good this year, as they stayed quiet all day. I asked DD if she had threatened them within an inch of their lives, but she said she hadn't said a thing to them. So they hadn't made Daddy nervous, as they sometimes do with their playful noise, so it didn't make sense that he wasn't eating.

We had a wonderful time enjoying getting to visit with everybody all at once, particularly since our older daughter and her hubby will be with his parents for Christmas this year. Younger daughter and the girls spent the night and didn't go home until Friday afternoon, so we did get on our other laptop and do some Wishlist shopping for the girls, so I'll have some things to pick from that they really want.

After such a pleasant day and a half, even with my stomach cramping, our whole world turned upside down when I got up to Daddy's to fix his supper Friday evening. I found him in the living room floor, conscious, but unable to get out of the floor. He was not hurt, evidently, and doesn't remember falling, but he'd been on the floor most of the day. Mind you, he has one of those "I've Fallen, and I Can't Get Up" buttons in his shirt pockets, but he wouldn't use it! I've never been able to get him to use it. No matter how many times I explain it to him, he thinks it's going to call an ambulance and take him to the hospital. But I have it set to call us, and then a neighbor, and only call the EMT's as a last resort.

So I called my DH, and he all but ran up there, and got him out of the floor, by the hardest. He was very weak, as he had not eaten since breakfast, and he's diabetic. We got some juice and a banana into him, and soon realized that he must have had a mild stroke, as his speech was slurred.

So, I've been taking care of him now for the last few days. He seems to be getting stronger, and his appetite is improving. His speech is still slurred and I'm being really careful to feed him thick foods like oatmeal, so he won't choke. I'm not sure what we will do today. It would be extremely difficult to take him to the doctor, and I'm not so sure it would accomplish anything if we did.

As for me, I can really tell the stress has put a strain on my Parkinson's meds. My balance is poor, because I'm really tired, and my back is bothering me from trying to help him stand up. Luckily, I've had lots of practice at care giving, and I do know the correct way to do things, body mechanics wise.

Daddy will be 102 in March, so it's going to be very difficult for him to recover from whatever happened Friday. He wants to stay home, and I want to be able to help him do that if it's at all possible. If I could be fairly certain that taking him to the doctor would get us some Hospice help, then it would be worth the trouble of getting him in and out of the car and the doctor's office.

Thankful to be Used by God

The last few days have been wonderful, with no problems of any kind. I've been exercising as much as I possibly can and catching up on some housework and eBay work that's been put aside.

I've been glowing from the experience we had while on our Date Day Friday. While following the directions from one estate or yard sale to the next, we had trouble finding one address. We had about decided to just skip it, but DH happened to see a sign in the local grocery store window, advertising the estate sale. I had read the directions wrong. So, we tried again and found the house. There weren't any cars parked around it, and we had to ring the doorbell. An older woman answered the door and invited us in to a house full of stuff in every room. But instead of it being things you would expect to be hers, it all seemed to be the kinds of things a young man would have.

After we looked around a few minutes and oooed and aahed over the beautiful old woodwork on the old home, she began to get talkative. She told us all about her son, who had lived in the house for about a year, before he had a seizure, fell in the front yard late one night while walking his dog, and ended up having five back surgeries that left him a paraplegic.

He had to move in with his parents and sell his home and his possessions, so his Mama was doing the selling. She was obviously upset as she related his story. She related how he was still having difficulty adjusting to this drastic change in his life, which seems pretty reasonable, under the circumstances. Of course, I was using my cane, so when I told her I had been diagnosed with Parkinson's she talked even more about how emotional he had become. I suggested he visit Wheelie Catholic, as Ruth has such inspirational posts and could find people in similar circumstances for him to talk to. She seemed very grateful.

We didn't see anything we wanted to buy, but we stayed there a long time, talking and mostly listening, because she really needed to talk. Both of us felt like God had led us straight to her. Our past experiences as caregivers, my current situation as someone newly diagnosed with a debilitating disease, and the similarity of our ages, all made her comfortable opening up. She cried a little and talked a lot, and we promised to pray for her son.

It was a perfect example of God working all things for good, and it has left me with a very thankful heart that we were able to be of help to this sweet lady, struggling to help her son, and yet feeling so helpless.

Am I in Denial?

We had our usual Date Day yesterday, and had a good time, as usual. It was windy and cold, and I was bundled up. DH was in short sleeves, enjoying the brisk fall weather. We've always been at opposite ends of the hot natured, cold natured spectrum, and it looks like the PD is just going to make that worse :).

We found a few good buys, but at one of the estate sales we found one of those deluxe model walkers with the padded seat and all the extra pockets that really looked brand new. The daughter selling everything said her mother had only used it a few months, and that's exactly what it looked like. She didn't want much for it, as I've been pricing them, and I knew it was a good buy. So, even though I don't need it now, we bought it.

As we paid for it, she made some remark about how I was going to enjoy using it, and I replied that I couldn't really say I would enjoy using it, but I knew that I would eventually need it. My DH went on ahead to the car, so he could figure out how to pack it away, and when I caught up with him, he had tears in his eyes. I, on the other hand, was totally unaffected. When I asked him about why he thought it was bothering him so much more than it did me, he answered that maybe he loved me more than I loved myself.

That's a load to think about for sure! It did get me to thinking that maybe all my "busyness" reading about Parkinson's and writing this blog is somehow a way to block out my emotions about it. I don't know. All I do know is that for right now I'm honestly not upset by all this. It's certainly not because I haven't read about how horribly debilitating it can become, because I've read plenty of that. All I know is that I've laid it in God's hands, and I'm trusting Him to make the best of whatever happens. I do pray daily that my DH will find some peace about this whole situation.

Telling People I Have Parkinson's

Today in Sunday School I told my friends that I have Parkinson's. There were a few gasps, and a few saying at least now I know what's wrong, but everyone was very supportive and tried to be very positive. We even had a special prayer time for me and for my DH, who has the burden of seeing another care giving task in his future. That part of this disease bothers me more than anything else. We thought we would be through with our care giving when my Daddy finally passes, bless his heart, but now it will just start all over again for him at some point in the future.

We can only hope that new medicines and maybe even a cure will be found by the time I am at the stage of needing full time care. I choose to be optimistic and believe that the meds are going to delay the debilitating stage for me for a long time. I am exercising and eating well balanced meals, as well as getting plenty of sleep and drinking plenty of water, too. I hope to be starting the Tai Chi classes soon, as well. If there's anything more I can do, I will do it. And above all, I know that God loves me.

I've already told my dear sweet hubby that I don't expect him to keep me at home the way we were able to keep his dad and my mother. He will be a lot older and he'll be doing it by himself, so there's probably going to be a point where he just can't do it all any more. I wanted him to know that I understand, but it just upset him to hear me talking about it, and he made me change the subject. I'm going to be praying a lot for him, that he will be strong through all of this. I love him so much.

From Care Giver to Patient - A Troubling Transition

Both my DH and I were upset yesterday, getting a glimpse of what I'm going to be like when the Parkinson's symptoms are too extreme for the medicines to be able to control them all. I felt a hundred years old and had visions of just how dependent on someone else's help I'm going to be.

I've always been the care giver, so it's hard to depend on someone else to put the time into research and learning all about the disease the way I would. My DH is just not the type to read about illnesses. He can't stand going to doctors and gets squeemish when blood is drawn.

He's great at home care, really the best, but he's not so good yet about keeping medical terms straight and understanding doctor's jargon and questioning doctors. This all concerns me, because he's always left all this up to me, and now he's going to have to take over at some point. He has been going back with me to see the Neurologist, and he has been contributing to the discussion, so he's really trying. I thank God that it looks like we have enough time for him to gradually increase his skills in this part of care giving.