First Impressions of Last Night's Sleep Study

I spent the night at the Sleep Study's Research Center last night. The room was luxurious, and since I cannot sleep on a flat bed, I specifically requested the one room they have that has a Tempurpedic type mattress on an adjustable bed. I have been interested in this type of bed for several years, thinking I might be able to get back into the bedroom with hubby, if we had one of those King size adjustable beds with the split. That way I could set my side for a recliner like position, while hubby could sleep flat. It's been years since we have slept together, and I would love to be able to have that closeness again.

Well, to say the least, I was disappointed with the bed. I tossed and turned all night, trying to find a position that would not make my back spasm. I ended up sleeping in this hole where my bottom was. I had just as much trouble with back spasms all night long as I do on a flat bed or the hospital bed I slept on for the first Sleep Study. I am glad I had the opportunity to try out this type of mattress and bed, as they cost up in the 3 to 5 thousand dollar range. It would have been terrible to have spent all that money and not be able to sleep comfortably.

As for the Sleep Study itself, I used the TAP dental appliance set to the easy setting I've been using ever since my neck muscles started spasms. I was hopeful that this smaller amount of forward movement of my jaw would be sufficient to stop the apnea. From his preliminary review of last night's data, my Sleep Disorder Specialist was very encouraged that the TAP is working just fine for me. He also agreed with me that my daytime sleepiness is from the PD meds, not from any underlying medical issue. This is the best possible news for me. He also said he would be glad to help with the documentation to help me to get Blue Cross/Blue Shield to reimburse us for 80% of the $1000 we spent up front on the TAP.

So, with my sore back and scalp full of gooey glue, I am happy. I fought the good fight to get used to the CPAP masks, and failed. I kept adjusting the lower jaw advancement on the TAM, until I put my whole neck muscles into painful spasms. Then, because of the pain, I backed off by several turns of the key. And it paid off, as I have evidently been able to get the apnea controlled at a comfortable setting.

Today is a GOOD day!!

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!!!!

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!!