caretaking problems

Progress Report: Week 3 in Rehab

/ Shirleyjdietz / 4 Comments

– The trach came out on Saturday!! He had no trouble and the hole is healing up with only a bandaid on it.

– Wednesday and Thursday were good days in PT and OT. He’s tossing bean bags in a basket and sitting up by himself for most of the sessions.

His aim could use some work, but they were all close.

– Swallow test on Monday showed he is still not completely safe from aspirating, but he is coughing less during sessions with E-stim. Had his first taste of ice cream on Friday.

Chocolate.  The electrodes on his neck are stimulating his swallow muscles.

– Alert more and engaging others in conversation. Surprised a couple people with phone calls where he did some of the talking.

He stood in the stand-up machine for almost 10 minutes before his blood pressure tanked.

On Tuesday of week three I got a call from the social services gal assigned to Dennis. She reported that the weekly meeting of all therapists, nurses and doctors had resulted in the decision to move him out, maybe by the end of the week. His progress was too slow to warrant the acute rehab aggressive schedule. He was often too tired or unable to focus for the whole sessions in PT. There were often issues with blood pressure and bowel problems this week as well. I understand what they are dealing with, nevertheless the change from 60 days to “out by the end of the week” was a little alarming.

The next day I went around to our local facilities in Hayward and got his name on their lists. There are three of them and they are all full with long wait lists. But since we could be waiting for years yet, it was still worth it to sign up for something in town.

After social services investigated facilities that would offer the needed therapies within reasonable travel distance, I was given the short list to consider. On Thursday I decided to visit the one rehab/nursing home that had an open bed. It was in Shell Lake, 40 miles from home. True, that would cut my travel time in half on most days but still… it makes me sad to be thinking of this level of care.

The building was acceptable and clean. The staff people who gave me a tour and spent time with me were pleasant and seemed candid about the quality of care given there. I felt it was a possibility, but was a little concerned about their ability to meet the needs of someone who can’t even turn himself in bed.

Back at home I happened on a friend whose mom had been in three different facilities as an Alzheimer’s patient. Shell Lake was the worst of the three. It was back in 2014 and things could have gotten better, but it did cool my already lukewarm enthusiasm a bit more.

I am praying that his progress toward the end of the week will cause the rehab team to reconsider and give him more days at Miller Dwan. It could happen, right?

Progress Notes: Week 2 in Rehab

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All in all, a good week.

Today, after a morning of various therapies, Dennis was helped into bed and got a much needed nap. As I watched him sleep, it was clear to me that he has improved. Even his appearance is more calm, less anxious, peaceful.

The biggest change came on Wednesday morning when respiratory therapy came into the room and swapped his trach out for a smaller, less irritating Jackson trach. When plugged, it does not allow air in or out, making the breathing experience about the same as not having a trach at all. It is still there if difficulties arise, but if all goes well for at least 48 hours, it is safe to remove it and let the tracheotomy heal up. There have been no difficulties. Saturday morning the trach is coming out and Dennis is so excited! It was the first thing he told me when I arrived this morning.

His voice has been more clear and easy to understand.

He has not needed suctioning to clear his airway.

He is moving his head and neck more, keeping a more normal position.

The progress on the physical therapy side is slower. He has continued to have low blood pressure when sitting and using the standing machine, making it hard for them to get him strong for those activities. Several times they have cut the session short and returned him to bed to rest. There is progress, but because Miller Dwan is an acute rehab facility, and Dennis’s problems are more chronic, there is once more talk about moving him to a sub acute facility to give more rest time to get stronger. This makes me nervous, but I am grateful for all they have done, their good communication with both the husband and me, and the excellent treatment he has had.

They wanted to have the trach out before they sent him elsewhere, and I have asked if they could also get him past needing the feeding tube. I am hopeful they will keep him another week. Social services will start looking for a facility closer to our home that could take him. I will start preparing our home in case there is no good place available.

In all this, I am not going to waste time and energy being fearful about problems we don’t even know we have yet. I want God to know that I trust him to work things out, when we have the need. I believe he always has a plan for our ultimate good. The only difference from day to day is that sometimes we see how the plan is good, and sometimes we don’t see – yet. His plan does not require me to be “in the know” at every step, and I clearly am not…

Sayings:

Nurse: “I need to take your blood pressure. Can I have this arm?” (the left one that he has trouble moving at all)

Dennis: “Yes, if you give it back when you’re done. I hardly use it anyway.”

The Last Road Trip?

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We have let enough time pass since the last trip for the memories to fade and not be quite so awful. I knew the time would come when we would have to try another trip, and that time has come. We have unfinished business in North Carolina, in our daughter’s basement, which is partly our reason for going. The other part is that we need to see them more often and want to do our part by going to them. We may not always be able to do that.

Preparation for travel is my first job. I have mapped my route and made hotel reservations for two nights on the road. Both nights find us in towns where I have relatives, and in another life I might have asked to stay with them, but not now. I am so glad that we can afford to choose lodging that suits Dennis’s needs and gives us a chance to get a good night’s sleep.

Our second night is in Madison, Indiana where my cousin and her husband have been developers, overseeing the remodeling of an old, abandoned cotton mill into a Fairfield Inn. It was a big project, and has added a valuable historic site to the city’s list of places to visit. We are actually going to be staying there, as well as having dinner with Ron and Marlene. This will be our biggest “treat” of the three days of travel.

Sat in this chair for a long time…
looking at this view…
while this worn out guy slept.

Nearly one month later:

Our trip proceeded pretty much as planned. The unexpected difficulties were Dennis’s persistent, recurring nosebleeds and a bout of stomach upset that kept him from taking his meds for a few days. He decided he was doing well without the meds and wouldn’t start taking them again – just his supplements. I didn’t argue with him because I couldn’t tell if he was worse in any way either.

We accomplished our mission in North Carolina. Painfully, I went through every box and evaluated every stored thing from our past Florida life. I sold one piece of furniture before Julie convinced me that she wanted the rest for a garage sale she intends to have. I spent quite a few hours sorting and pulling out a few small things that would come back to Wisconsin in the car with us. We had a very full load. Dennis tried hard not to be too needy. He sat in the bedroom watching tv and his phone most of the two weeks.

We did spend some good times with Kevin, Julia and the three children. I think Dennis enjoyed that. They gave up their master bedroom and bath for us, and it was quite adequate, although any change takes getting used to when you have disabilities.

We traveled back in two days. We always seem to be motivated to spend longer hours in the car on the way home. Our last day, driving up through Wisconsin, was rainy and then snowing. Welcome home. I’ve said it before, but maybe this really will be the last time we travel together.

Early on in the road trip, Dennis was still doing well getting around with the walker. He is feeling considerably weaker now.

To Explain, or not to Explain?

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There is a tension in our life together, the husband and I. He is less aware of it than I am, but even he feels it at times. The tension arises for me when I see him talking to people, as he often does when he’s out and about. Knowing that it is good for him to express himself and socialize, I usually just watch. But I also know that eventually I will have to decide whether or not to step in and rescue.

Rescue who? Usually it’s the kind person who has decided to engage him in conversation.

Before Dennis had the diagnosis of Lewy Body Dementia, I didn’t feel responsible to rescue anyone, well, hardly ever. Before Lewy, he would often get in his “teacher” mode and give long lectures complete with multiple rabbit trails. Since I had heard it all before I would let him and his audience fend for themselves. His topics were still reasonably interesting to a lot of people, hearing them for the first time. Others knew not to get him started.

But now, I have his reputation and his dignity to defend. His topics are much more narrow and not always interesting to others. He’s not good at reading body language and knowing that he’s losing his listener’s attention. Sometimes his discretion is not in play and he says things he shouldn’t. We talk when we’re alone about these times and he is thoughtful and serious about doing better.

Other times he listens as well as he can to conversations but doesn’t hear or understand important parts of them. I’m often surprised to find out what he thinks he has heard.

He is still doing very well cognitively and cares about his interactions with people. He often wants to go over and talk with Mom. He loves to go to church activities. He listens to his favorite people on YouTube and other social media so regularly that they seem like family. His personality is still intact and recognizable. He is still himself, and what a good thing that is! I’m more than thankful.

The fact remains. I spend quite a bit of time explaining Dennis and his intentions to others, and a lot of time explaining others to him. I feel like the gateway to his awareness of the world, and somehow that bothers me.

What Hope Can Do

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I haven’t recorded all the things that Dennis has gotten through lately, and since they are remarkable they should be recorded.

We’re in a stage where the doctors seem to be done with him. No one is checking him or recommending new treatments. He has discontinued some of the supplements that didn’t seem to have much effect, but were costing a lot of money. It could be viewed as a discouraging time, but he remains outwardly hopeful and unperturbed.

He was a little unsure about the travel we had planned for the second half of July – it was ambitious. We went from our home in Wisconsin to Seattle, by car for “wedding week”. He wanted very much to be present to see this daughter get married so he did what he could to prepare, and tried not to put any trouble in the mix of all we had to do.

We spent five days driving out, in which we learned to get in and out of hotels, restaurants and restrooms with all our “stuff”. It was very different from being at home and I was unsure what that would do to him, but he adapted. There were a lot of times when the challenge of steps, inclines, small spaces, and long hours made him very tired. We had a wheelchair/walker with us but by the end of wedding week and the four day return trip, he was riding in the wheelchair most of the time. I was very worried that he might fall.

It was a good trip. We were relieved and amazed to be back home after two weeks away. He has recovered and not experienced any lasting changes from all the unusual routines. I thank God every time I think back on this time.

Yesterday morning, praying about the day ahead, God and I came to an agreement. Our new son-in-law’s parents were coming for their first visit to our town and I had arranged with a friend for a boat ride on our favorite lake. I knew it would be kind of weird for Dennis not to be there with us, but I questioned whether we could get him in the boat easily. Even he had said he would just stay home because it sounded hard. We had done this same excursion two years ago with different friends and it had been hard then. He has declined a lot since.

Back to the agreement. I felt that I should ask Dennis again if he wanted to go on the boat, and if he did we would plan on it and God would help us. As I suspected, Dennis wanted to go. Here’s how it went down.

We arrived at “Lunch on the Lake” and talked with Mr. Jacobsen. He allowed us to drive down the steep embankment, on their lawn, to get near their boat dock. Dennis used his walker to finish the distance and get out on the long narrow dock. It took a great deal of coaching and encouragement from all five of us to tell him where to hang on, which part of him to move next, how high to lift his feet, when to duck under the boat awning, etc… , and we were ready to catch him at any moment if we had to, but he made it. It was remarkable because this is a guy who often has trouble just getting in bed.

There he is, in the boat.

We had a good hour long boat ride and a nice lunch with our guests before we had to repeat the whole process in reverse. I think we all had a sense of accomplishment when it was over and we were in the car again. We did a little more sightseeing with him riding in the wheelchair, and by the time company left, he was ready for his overdue nap.

But, can you see what hope can do? Sometimes God gives us challenges and wants to see what we will do with them. With the challenge, he promises to help, to teach, to show up in some way to demonstrate remarkable things. I am so thankful we are not on this journey alone.

This guy. Hopeful.

The New Chair

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Dennis has been getting more receptive to equipment that makes movement easier for him. He always used to say no to those things, thinking that he should continue to do everything the hard way, under his own steam, because it was “exercise”. But now his slowness and instability make it hard for me to take him places, even close places like Mom’s house, or to my brother’s which is easy walking distance (for anyone but Dennis).

So the first concession was to start using a walker. We had a low end model but he found it hard to go over uneven sidewalks because the walker had only two wheels and the other contact with the ground was just aluminum legs which often got hung up. I guess that’s why people buy tennis balls and stick them on the legs.

Then he discovered Mom’s fancy convertible wheelchair, which can be used as a walker and also has a seat. It is extra security when he gets tired and needs to rest. He hardly ever goes far enough to need to rest, but that is beside the point. The seat is there and ready.

Yesterday, he broke down and said he needed a lift chair. We had been noticing the increased struggle getting out of recliners. He loves to spend most of his time in that type of chair but it would take him a half dozen attempts to raise out of one. He has very little strength in his thighs. At the same time he had been having frequent urges to get to the bathroom which was not good when he was stuck in his chair. He had tried Mom’s lift chair last week and found it quite impressive. He wanted one.

There two furniture stores in Hayward – the expensive one and the less expensive but still horrifying one. In the lesser store I found two chairs, both of which were just a bit under $2000. They also looked huge and I am not a fan of huge, heavy furniture anymore. I didn’t even bother with the expensive store. Instead I went to Facebook marketplace and inquired about three that were within reasonable driving distance. This morning I borrowed my brother’s truck, picked up a strong helper and drove an hour away to Ashland and fetched home a chair. The upholstery is in great shape, and it only cost a quarter of what a new one would cost. I could be happier about the electronics which are a bit confusing, but it does a nice powered recline and it does eject him satisfactorily. There was no place to plug it in for a test at the storage facility where we picked it up.

I don’t know, it seems really big to me…

I think he’s happy tonight. He likes it (thankfully). It’s a comfortable chair, although I’ve only kind of sat in it once. It’s quite a piece of furniture, with a “presence” all its own. I’m afraid it might even have a personality. It might need a name. At the very least it calls for a living room re-arrange, since it looks really weird in its heightened position, waiting for its occupant. I’m hoping to dream something up while I sleep tonight. I’ll find a good place for it. Welcome Mr. Chair.

Can You Get This Off My Phone?

/ Shirleyjdietz / 2 Comments

Today the husband came to me in my “girl cave” wanting to know if I could fix something on his phone. He had inadvertently taken a video of his knee and posted it on Facebook. A fairly complicated accident, if you ask me. There were already two comments on it from friends, which was nice, but he hadn’t seen them yet. Instead he was frustrated over an email ad offering to take down an unwanted photo from an unnamed site.

Is there some internet business just scrolling Facebook, finding weird videos, and marketing themselves as being able to solve some horrible problem? I don’t know. I just edited the Facebook post. I could have deleted it but the friend messages were nice and I thought he should keep them. But the episode made me wonder if he could find trouble with all he does on his phone…

Hey, why not? It’s a nice knee…

It is his dearest occupation – to watch/listen to podcasts and videos on his phone. It’s close, in his hand, and the screen is magnified to a size he can read. It talks to him and gives him things to think about. I don’t know what could replace it in his limited arsenal of things to do.

His inability to see things for what they are, such as advertisements, is constantly coming up in our conversations. He is very swayed by clever marketing and feels like he has “discovered” things by his “research”.

Lately he has been “researching” a problem my Mom has been having and is certain he can help her with it. Last night, when I had disappeared on a bike ride, he went over to Mom’s, uninvited, and was sitting talking with her when I stopped in. When I left to get a shower and go to bed, he didn’t want to come. He sat and talked until nearly 10 pm. I wasn’t sure if I should make him come with me, but I figured Mom could handle it if she wanted him to leave. She said he told a lot of old stories (no surprise there). Her comment was, “he doesn’t get bored when he’s doing the talking”. Not always the case with those who are listening. He didn’t remember to tell her about his research and wanted to try again today.

It’s sad. Sometimes it’s frustrating. But he is still interested in life. He’s kind, cooperative, funny, and really not that much more work than I’m used to anyway. And I have so many places to find joy that it amazes me. God is good, even (especially) in this phase of our lives. We are okay, at least until I can no longer figure out technology either…

Our “Special” Station

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I’m confused. I don’t know whose brain is having the most trouble any more – mine or his. Is he getting better? Sometimes I think so but it’s never clear enough for me to start treating him like he’s becoming more capable. And I think that’s making him angry, in a very suppressed, passive aggressive way. It’s not very much fun.

Our special station is TBN, Trinity Broadcasting Network. There are some very good shows on it and I love seeing what is going on in the world with missions and Christian initiative. But it’s on almost all our waking hours and probably 80% of it is preaching, one speaker after another. You know that cadence of voice that is associated with preaching – yeah, that’s it. Almost all of them talk that way, and I say “talk” in a general way because a lot of the time it’s yelling. There’s always some man on a stage yelling at a huge auditorium full of people. I don’t feel like I’m getting more of God via TBN. I feel like I’m getting more of preachers.

Another thing that they all do is ask for money to sustain their ministry. Of course, they have bills, and they are doing work for God. The husband is very soft-hearted and convicted by all the yelling. He wants to give them money, maybe not all of them, but often. He’s been watching them for months, knows their jokes, their speaking habits, what their wives look like and how many children they have. They are his friends so when they ask, he wants to respond.

Just today he told me he really wanted to get a certain book, which comes with a $40 donation. Another preacher talks about how he has a habit of carrying hundred dollar bills around and handing them out when the Lord tells him to. The husband would love to be that man. He doesn’t carry money in his wallet any more and I wonder if he’s subconsciously afraid he might give it all away if he did.

Not too long ago, in his musing about how wonderful it would be when he got well, he mentioned that it would be so much fun to go to the store and buy something himself. I reminded him he had a credit card in his wallet and could do that now if he wanted to. He seemed surprised.

He kind of thinks he will be well this summer and should be able to ride his bike. It must be hard to have such high expectations and not be able to see more progress toward reaching them. Personally, I think he expects too much since he stopped riding bike even before he was diagnosed with Lewy Body. And how many couch potato 74 year old men are riding bikes even if they are well? Not many.

This afternoon he sternly told me that I needed to get Mom to the doctor about pain that she’s having in her legs. He is alarmed and knows what I should be telling her to do – the magnesium thing, still. Magnesium is curing cancer and Mom could have it in her bones. He needs to get the ball rolling by telling me to get on it. Never mind that Mom and I talk over her condition and options pretty much every morning. I’ve been helping her with all her medical decisions and know what she wants. I’ve also been doing the same for my aunt, oh and for him, the husband, as well. But I am too slow now and need to be told what to do for her.

I was irritated and didn’t give him the response he wanted. He is irritated and grouchy. I know he feels like I don’t take him seriously. It’s true, I don’t. But I kind of have to act like I do and then explain to him why I’m not hopping immediately to do his bidding. It’s just confusing. This guy is so much like my husband, but he doesn’t do any of the things a husband does.

And since I can’t take the steady dose of Godly teaching from our “special station” and retreat to my room instead, I guess that makes me more toward the pagan end of the spectrum than he is. That feels a bit uncomfortable, that and a lot of other things…

What Next?

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February 24, 2020

Is this going to be the end of our half year of stability? I hope not, but things do seem to be getting a little weird lately. I really think the protocol the husband has been on has done good for him so it will be a disappointment if we run into trouble again. Going backwards is not fun.

In November when he had the DVT, he was put back on blood pressure medicines because he was very hypertensive. An additional one was added a month or so later because he was still running high. Well, his readings started coming down and then he began having times when it was low enough that he would feel dizzy and weak. I took away the diuretic and that helped somewhat. Now it is low more often and we have started cutting the last BP med in half. It might be that we are back on the autonomic nervous system “roller coaster”.

He has also noticed more hand tremor, and it is affecting both hands now. Because all this is worrisome to him, he has started back on his research in earnest. That, and watching all his favorite TV preachers every day keeps him quite occupied. He is still thinking logically, and his temperament is good, but I’m thinking this could get very obsessive, if not delusional. I’m so hoping NOT because…

I’m taking some time away in March to be with my daughter in Seattle. My brother Gary and his girlfriend Lyn are coming to stay in the house with Dennis. I’ve assured them that he doesn’t need actual care, just some oversight and help with meals and questions about where things are. Nothing about travel is easy here. With the arrangements I had to make to get to the airport, Dennis will end up being by himself for about a day and a half before Gary arrives. There are others who can look in on him. I’m counting on this to be okay.

At first I thought we might both go on the trip and Dennis was surprised and trying to adjust to the plan. When I told him he didn’t have to go, he was somewhat disappointed, but also pleased that I thought he was well enough to stay home without me. I don’t think it’s making him anxious. I could be wrong.

New things include some fancy probiotics and liposomal glutathione which the functional medicine doctor (Nan, she asked to be called) has prescribed. Correcting what is happening in the gut is very important to her. We are also giving “gluten free” a trial. The dining room table has a growing collection of bottles and containers now, which I’m not too happy about, but it’s too much trouble to put it all away in between uses.

I should get him walking/exercising again. We did so well for a week or two and then we started having to avoid germs and being around people with colds. We have a family member in cancer treatment who has low immunity. I know we can’t stop living normally – she wouldn’t want that – but at the same time it would be awful to be the ones causing a dangerous infection of some kind.

All for now. Can it be spring is almost here?

A Problem Walk

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10-2-2019

After several weeks of stability and no new problems developing, I was surprised by what happened today.

Dennis decided he should go for a walk. It’s been cold and rainy, making it easy to stay inside without really planning to avoid exercise. He realized his walks had been infrequent. He also has had trouble sleeping and staying asleep and thought the exercise might improve that problem.

I noticed right from the beginning that he was walking slowly. He had to be reminded every few steps to pick up his feet and walk instead of shuffle. We got to our turnaround point and he began to lean to his right and couldn’t straighten up. The steps got shorter and he said he had to stop for a minute.

I thought his posture might be making it more difficult to walk because at this point, he was leaning back and to the side, with his belly thrust forward and his knees always bent. It was very strange and he couldn’t correct it, but he insisted on “walking it out”. A few steps later he was locking up and hardly able to move so I ran back to the house for the walker with the sit down option. He tried to walk with it but soon gave up and sat down. He pushed himself backward, seated in the walker, all the way to the house. He even had trouble with that. It was very odd.

He was also puzzled, but decided that he had gone too far and had simply gotten tired. He was glad to be back in the house, resting in a chair that he could easily get up from.

This whole episode was very Parkinsonian in nature. I have thought that perhaps he was getting better, reversing some of his symptoms affecting mood and cognition. That may still be the case but this is a setback toward a movement disorder. It’s unsettling to me. I have been counting on him being able to move himself. If he loses that ability I don’t know if I can care for him without more help. Not good.