Tag Archives: respite care

My Uplifting Valentine’s Presents

Day by Day with a Movement Disorder Posted on by 9

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.

Hallucinations

Day by Day with a Movement Disorder Posted on by 6

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?

Update on Daddy

Day by Day with a Movement Disorder Posted on by 2

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.

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

Day by Day with a Movement Disorder Posted on by 6

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.

Christmas Eve

Day by Day with a Movement Disorder Posted on by 8

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.

Another Day Goes By

Day by Day with a Movement Disorder Posted on by 4

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!!

Day by Day with a Movement Disorder Posted on by 4

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!!

Day by Day with a Movement Disorder Posted on by 4

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!!