"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.

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!!

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?