Update on Dental Appliance for Sleep Apnea

I've been wearing the TAP device for the last three nights, and thought I'd better let you know what I think of it. All in all I'm very pleased. It's certainly easier for me than trying to get used to the CPAP mask was. I would be lying if I said it is comfortable, but it's not painful and I am pretty sure I will eventually wear it without particularly noticing it. I guess it's about like wearing glasses for the first time.

There are a few things that have to be part of my routine now, because of the dental appliance. It is absolutely a must that I brush my teeth every night, something I've never really had a consistent habit about, hanging my head in shame, as I usually fall asleep in the recliner while watching TV. If I don't, I'm just asking for a bunch of cavities. Also, I have to brush the mouth pieces every morning when I brush my teeth, and leave them out to dry thoroughly.

The big change is that there are two small pieces of pliable plastic that I have to stick in between my teeth at the corners of my mouth every morning to chew on for awhile. The idea is that the TAP pulls the lower jaw forward for sleeping, so in the morning, I have to move my lower jaw back into it's normal position, so my bite will be correct. It's kind of like chewing gum, I guess, but there's no taste. It's not hard to do, but it's absolutely necessary. It's supposed to strengthen my jaw muscles, too, which will be a good Parkinson's exercise. PWP lose the ability to control their facial muscles eventually, so this should help me forestall the expressionless Parkinson's Mask, as it's called.

I haven't made any turns on the device yet, so I'm still wearing it at the first setting, which has my upper and lower teeth meeting in the front. Now, for some of you, they already do that to begin with, but I have a noticeable overbite. That overbite is one of the main reasons my Sleep Disorder doctor thinks this dental appliance will stop my Sleep Apnea. I figure I'm going to be wearing this thing the rest of my life, so what's the rush. I want to get used to it first, before I start cranking my jaw out any further, particularly since it's already set to move my lower jaw out a good bit just to make my front teeth meet.

As far as my sleeping goes, I haven't been doing much of that. I don't really think it's because of the dental appliance, though. I've taken Lunesta two nights now, and still didn't sleep more than three or four hours. I made it to five hours last night, without a sleeping pill, which is the best this week. I've never found a sleeping pill that really worked well enough on me to justify taking it, so I can't say I'm surprised the Lunesta didn't help.

I've been pretty upset with other things that have been going on with my Parkinson's right now, and I think that's cutting into my sleep. Also, I'm on several more PD meds since my ER visit, and they may be making the insomnia worse. And, even with the extra meds, I'm still wobbly, although nowhere near as bad as I was before I went to the ER.

I am having some spells of being extremely spacey and unsteady, which pass after about an hour or so, usually right after meals. I'm guessing it's the combination of all the PD meds I'm on right now, but my Neurologist will straighten that out for sure. I have them all spread out as best I could, so I'm taking something about every hour or two all day long.

I see my Neurologist tomorrow, and I'm very hopeful that he can sort out what needs to be done to help the insomnia and also give my Gastroenterologist some suggestions about medicines I can take to calm the colon spasms. He may have to change some of my PD meds, so that I can take an antidepressant, as that is the class of drugs that the colon relaxing medicines fall in. Oh, I forget to mention that I stopped taking the St. John's Wort after the first day, as the more I read I realized it was in the category of an antidepressant, and I can't take those right now.

So I'll spend today looking forward to tomorrow and some answers, I hope!

"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.

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?

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.