Conversations with the husband are rare these days. He often talks at length, unaware that his speech is unintelligible. Most of the time his control of speech muscles is minimal, but there are those exceptional times of clarity. It is then that I get a glimpse of what his mental status is.
Today I went over to him because he seemed to be restless, and I thought a little re-orientation would be helpful to calm him. We talked about his memory and who he remembered. I asked him if he knew who I was. He did.
“You’re my wife.”
“Well, I have two rings on my finger. One of them is yours.”
“How many rings have you got on?”
“I have two rings on my finger. You see this?” (holding up my hand)
“Yeah, I see that as four fingers.”
“Yep, and see the rings on that finger?”
“Yeah.”
“One of them is my wedding ring and the other one is yours. One of them is the diamond that you got for me, and the other is your wedding ring that they took off you at the hospital. They were afraid your hands would swell up and it would be too tight.”
“And what ring of mine are you wearing?”
“Your wedding ring.”
“Oh yeah. (pause) Are you married to me now?”
“Yeah, don’t you remember we got married?”
“No.”
“Well, how did I get to be your wife if we didn’t get married?”
(thinking hard) “Yeah.”
That was only one of the interesting exchanges today. Earlier he told me that another me came in the room from his left and joined into the me standing at the bedside, and I was transformed into someone even more me. I’m wondering if this isn’t the beginning of Capgras syndrome, which I’ve heard so much about with Lewy Body dementia. If only the other me’s were able to help out a little more, maybe I could get some rest. Wishful thinking…
Staring out the window at the snowstorm after our conversation.
Puzzles, studying Spanish, writing, trying to stay awake…
I spend a fair amount of time wondering how long this disease is going to hold my husband captive. He seems now to have entered that world of vacant-eyed, non-communicating persons that can’t answer questions anymore. “Do you hurt anywhere?” is too complex a question for him. He has the rhythm of speech, and a searching look as he makes sounds. Every once in a while a real word escapes. It always surprises me that it has nothing to do with a relevant topic. Off the wall, almost off the planet…
I do the things for him that I know I should, not knowing if they are the things he wants done. Does he want to be left alone? Does he want to be bothered and stimulated? Is he listening to us as we talk around him during his care? How does he feel about our routine? So many questions.
As I look at him and think about all the different stages of life we have been through together, I feel so sad. He would never have imagined this helpless, brain damaged state for himself. Who would?
It has been a roller coaster progression. Those days when he is more alert, showing that tiny bit of himself that is recognizable – those days are fewer now. This week he produced the smallest hint of a smile when asked. I hugged him one night and he put his hand on my back and patted it. It was so sweetly familiar it made me cry.
All these thoughts and more swirl around our daily activities, our routines. It is probably a blessing that we have things to do, the husband and I. Useful work anchors our souls in the present, instead of wondering about the future.
Here is our present routine, in case you are curious. The days starts for me around 4:00 am. On a good night, he has slept for hours in the same position and needs to be turned and put in dry briefs. He has also been without a feeding for long enough that he acts restless, which I interpret as hunger. A feeding of formula in his tube quiets his stomach and puts him to sleep again like a sedative.
I take the audio monitor and go over to Mom’s condo for coffee and conversation. I come back in time to crush and give the morning meds, again through the feeding tube. Our caregivers arrive around 8:30 and I like to have my own breakfast done by then. For two hours I can either work with them on some of his more complicated cares, or I can leave to do errands, or maybe even spend time outside on warmer days. They leave by 10:30 and Dennis is up in the recliner for the next five or six hours. The change in position does him good, although he sometimes thinks he is still in bed.
The living room is given over to hospital decor and I’m pretty happy with the way it works.
During his “up” time, I find videos or tv programs for him to listen to. He seldom opens his eyes to watch things but he is often listening. He sleeps a good deal of the time. He gets another feeding around 11. Workers from Hospice do their weekly checking during this time. His RN comes on Tuesdays, the CNA on Thursday mornings. The chaplain has checked in with us, and a volunteer comes once a week to give me free time for a couple hours. I busy myself with daily laundry, ordering supplies, basic housekeeping, and caring for his physical needs until around 3 in the afternoon, when I help him back to bed. I move him with a Hoyer lift, which makes it pretty easy, but it does require some experience. Thankfully, I have years of that with a former client.
His third feeding of the day, comes at about 4 pm. Feedings are a mixture of 200 milliliters water and 300 ml. formula, given by gravity feed. It gets put in a bag and hung from a pole like an IV. Getting the formula has been a problem and I get messages that it is out of stock all the time. Several times I’ve been down to the last bottle before another shipment comes. That it always does come in time has been one of the ways that I’ve been assured God is aware and caring for us.
Another slew of crushed pills comes at 5 pm. The evening caregiver arrives at 6 to give me another break for dinner. They help get Dennis comfortable for the night before they leave at 8. He gets his last feeding of the day at 9 or 10, depending on how tired I am and how badly I need to sleep. I do go to my bedroom to sleep, but I have the monitor and can hear how he is breathing. I get up and check him at least once, more if he’s having issues.
I record all these happenings, as well as doing blood pressure checks, and giving frequent oral care. I would probably consider it a pretty easy nursing job if it were not 24/7, and if it were not my own dear husband. I have to shut some of the sadness out, or it would be too much.
Changes will come, but for now, this is my caregiver’s world. Many thanks to all who have prayed for us, sent encouragement in one way or another, and been kind in their responses. You are valued and necessary in this journey.
These are some of the most frequent questions I’m asked this winter. The husband has been home since the beginning of December. Each time, the opportunity comes along to orient him I tell him how he’s been sick for six months and in several hospitals and a nursing home, but that he is now at home.
Unedited view of our living room hospital. We are grateful to have a 50+ year old recliner which was Dennis’s mom’s favorite chair. It is the only chair small enough for the hoyer to close in on.
“We are in our condo in Hayward and you are in our living room. You are in a hospital bed because you are too weak to walk. You have a hard time swallowing and are fed through a feeding tube into your stomach.”
It is all news to him. Sometimes these things register and other times he just closes his eyes and says nothing. The next time he has to go to the bathroom, that’s exactly what he thinks he can do – he needs to be reoriented all over again.
I tell him “You can’t get. up. You aren’t strong enough to walk and haven’t walked for months.”
He tells me, “How do we know if you won’t let me?”
I tell him, “If you could walk, you would be up doing it because I’m not stopping you.”
This exchange is about as feisty as he ever gets. He has the same cooperative nature that he has always had, but the cognitive decline is very noticeable.
Lately the neurological decline is more apparent also. There are times when he cannot speak clearly, or at all. Other times he can suddenly have a conversation and be understood. What he’s saying may not make sense, but I can tell what the words are.
There are some nights that I think he’s dying (nights are always the worst times) but the morning comes and things look different. His body is stronger than his brain. If he gets an infection of some kind things could change quickly. I try to be careful in caring for him – in the complexities of enteral feeding, medication administration, watching for skin breakdown and managing incontinence.
It helps to have Hospice on the journey with us. I don’t have to make decisions alone in most cases. It helps to be able to hire help, to share the heavy lifting and the unpleasantness of necessary tasks. God has supplied a wealth of resources in all areas of need and that is good because this might be a long haul.
Some details:
– Dennis is on 3 enteral feedings daily, about 8 hours apart, which amount to a 1200 calorie diet. He does get hungry and that looks like restlessness. When I see that I know it is time for a feeding. A full stomach is very soothing for him and it puts him to sleep for several hours.
– His blood pressure has been stable on the three blood pressure meds that he gets twice a day.
– He’s had a UTI recently and been on 3 different antibiotics. One was finished when we found out the culture indicated two different ones. Lots of bacteria getting killed.
– Most of the day is spent sleeping in his mother’s LazyBoy recliner, with an occasional awake moment in front of the tv. He might be listening to much of what goes on. There is occasional evidence.
– The rest of the time he is in his hospital bed in a variety of positions. He goes back and forth between these two places with the help of Harvey the Hoyer. Dennis decided on the name and it gives us a good laugh.
– Our paid caregivers come weekdays for two hours in the morning to help the husband up into the recliner for the day, and for two hours in the evening to get him prepared for the night. Every other weekend I have help, but we are working on that. I’m still filling in the day and doing the nights. It’s interesting and sometimes exhausting but when I need to, I get sleep.
– We are grateful for the humidifier that runs 24/7 in our dry winter climate
– Our daughters visited recently and were able to connect with their dad in good ways, mostly through songs. He still remembers and comes out of lethargy to sing when coaxed. Thank you Esther for the humidifier and Julie for the seemingly endless supply of cookies to cheer my soul.
That’s all for this update.
Harvey the Hoyer, an awkward but absolutely necessary piece of equipment.
The last four months have taken their toll on Dennis. I have been convinced that he would never get through another hospitalization ordeal like this has been. However, having that thought did not prepare me for the feeling of signing a paper agreeing to not have resuscitation, the DNR document. It came with a lot of emotional weight.
The last time Dennis was able to talk about the subject of hospice he was agreeable to entering the program if it would help him get home from Maple Ridge. He also thought a long while when the hospice nurse asked him if he felt he was capable of making complex decisions about his health. He finally said no, he didn’t feel capable. Being too tired to think very long, and sometimes confused and disoriented, he was still realistic enough (and brave enough) to say that he trusted me to decide for him. Since then he’s become more confused about his own condition, often forgetting that he’s had a stroke. Often he forgets that he hasn’t been getting up and walking to the bathroom. He forgets he hasn’t been eating for months and has a feeding tube.
More often now he is living in his dreams, sometimes with eyes wide open, hallucinating. His hands shoot up while he’s lying in bed and he’s reaching for… who knows what? But each day there are a few good moments when he is oriented and involved with his real surroundings.
Today, sitting up in the recliner, he was watching our YouTube cooking show from Azerbaijan. It’s slow moving with country scenes, animals on the farm, and a very proficient farm couple harvesting food and cooking some amazing dishes. No talking, no fast moving ADHD programming. He perked up and watched and recognized things. He wanted some coffee – the only thing he asks for that I can give him, besides tea. We sat together enjoying the show with me giving him spoonfuls of coffee every now and then, until I noticed he was asleep.
Have you ever really looked at your spouse’s teeth? Not just the ones in front but all of them? I thought I had, kind of, but now that I’m helping brush them, I don’t know what’s in there. In fact, his whole face looks so different now. The musculature is changing, being held differently. It’s painful to watch him change, but here we are. Changing, ever changing.
We sit looking at this view out our living room window.
Today we have a snowstorm in progress. We must be on the edge of it because there is very little wind, just a lot of heavy wet flakes. The temp is just above freezing, making the roads hazardous. Our caregiving help has the morning off because I did not want them to travel the 20 miles to us.
I put Dennis in the recliner (I feel like a 3 year old, “did it all by myself!”) and pushed him up to the living room window. He had his sips of coffee and is sleeping again. I have been outside making sure the bird feeders are full and taking pictures. It is a beautiful snowfall but I am afraid it will break some limbs off the trees. Sitting together, watching the snow – what a gift it is.
It’s just water, but what wonderful ways it can appear.
Monday we had a video visit with our primary care doctor. I am so thankful that virtual appointments have become a thing done well. I guess we have the last few years of pandemic to thank for that. Our visit with her resulted in our second attempt at getting Hospice help. There are at least two Hospice organizations in our area, and soon to be a third. Some are “for profit” and others are not. Apparently being refused by one does not mean refusal by all.
One characteristic of Hospice is the speed in which they respond. Monday afternoon I got a call from a nurse and an appointment for Tuesday morning.
Dawn, the nurse who evaluates and her trainee Julie spent about an hour meeting at our house with us yesterday. They left feeling that it was possible for us to get on their program and they promised to get back to us after presenting it to their superiors. Again, because of the feeding tube, Dennis has to have special permission in order for Medicare to grant payment. I guess whether or not it happens is not very important to me anymore. I’ve chosen the path we’re on and I know we can handle it without their help if we have to. It will be okay.
I have heard from so many family members and friends, in town and far away, and thank God for all the prayers and words of encouragement. Daughters Julie and Esther are making plans for a visit in the next few weeks. Dennis’s birthday is the day after Christmas. Our 50th anniversary is coming up in January. I have so much to look forward to! A kind neighbor sits with Dennis and allows me to get out for appointments and a walk now and then.
I am finding ways to take care of myself so I can take care of Dennis. So many of you have been encouraging that and I hear you. As a nurse, I have frequently said it myself to others and I know it is important. I think I’m doing well on that account.
Most important are your prayers for us. It means so much to know that our God is hearing our names mentioned to him by others. The accumulated effort of his people is influential and carries weight with God. It’s not that he needs a magic number of prayers before he can take action – he is always acting on our behalf and we feel unusual favor in all the places we’ve been. But I believe he is delighted when his people act like they have gotten his point – we are here to learn to love each other and care.
Miraculous healing is not the point either. It’s sometimes a wonderful encouragement and evidence of God’s power, but what we are promised is that we will die of something in this imperfect world. I’m okay with God deciding when and how. He knows so much and makes the best decisions! That’s how I look at our situation, and I know Dennis agrees with this too.
It’s hard to describe how someone can be apparently sleeping, and at the same time be restless. Isn’t sleeping rest? Good question. We are starting to experience something that doesn’t feel like sleep or rest for either one of us.
This post was written last week, but then it sat around waiting and wondering why it didn’t get to go on the blog. Poor neglected thing…
The last couple of days have brought a few subtle changes. The husband did well at keeping his eyes open while we had visitors, but he could not talk. Later he tried talking to me but I could not understand him. Much of the problem I attribute to his mouth being dry. He breathes with it open all the time and his tongue dries out and becomes pretty useless in forming words. He doesn’t move his lips either. Words are just a bunch of vowels – aahh, eehh, uuoohh. I guess and we play 20 questions until I give up.
And then the restlessness started. I stopped dressing him in sweatpants for convenience sake, instead putting a blanket over his legs when he sat in the recliner. But it wouldn’t stay on. One leg would come up on the chair and the blanket would end up on the floor. Twice, when the recliner was fully extended, he got his legs trapped between the footrest and the chair and couldn’t get out. That was interesting.
Me, demonstrating how not to sit in a recliner.
Then I started finding him uncovered in bed whenever he was in it. It does get warm in the house on a sunny day so I can understand him wanting to cool off. But at night it can be chilly. Last night, every two hours or so, I found him with the sheet twisted around his feet, his bare legs and shirted torso uncovered, blankets on the floor, eyes wide open and hands reaching for some invisible something. One time while I covered him, he said “Cover me more” and it came out clear as a bell.
So my guess is that his lucid moments are becoming fewer, and his “dreams” or hallucinations are more frequent and require movement. So he moves whatever he can, which is mostly his right leg and arm.
I know I’ve been losing him in small increments for a long time, much of it he has hidden. He’s not able to hide anything now.
These are the sad times that I speak about. The good thing is that he is here with me. I don’t have to go anyplace to take care of him. No snowy, icy roads. I can handle the interrupted sleep and the crazy talk.
“I love this new bed by the window with an air mattress! And thanks for putting a man in it at night to keep me warm.” Shadow the cat.
We are nearing the end of our first week with Dennis being at home. A routine is developing. Our helpers are arriving on the assigned days. Every day we figure out some small thing that is a better way of doing, a better product, a better schedule, a better order. Hard things become more do-able.
I am so grateful for all of this. There is a certain comfort having the two of us in the house, three counting Shadow (the cat). Our times are quiet. The sun comes in through our living room windows on a clear day. The moon and stars, reflecting off the snow, light up the still nights. We help Dennis up to sit in the recliner where he sleeps, or listens to TV or music. The cat settles down on his lap in the chair, or on the bed. There is some little chore every hour or so, a medicine, feeding or position change.
The more active parts of the day are getting going in the morning and getting to bed in the evening. There is about an hour of work involved making sure the husband is clean, dry and comfortable. It’s physically taxing for us caregivers and for him. He gets exhausted being lifted, rolled, and “fixed” for whatever is next.
He says very little and sleeps, or has his eyes closed most of the time. He says he has no pain, no fear, very little discomfort ever. He can answer simple questions like that, but ask him anything complicated and he cannot find an answer. He has nothing to say about any of his care, with the exception of answering when I say I am about to take his blood pressure. “Be sure to give it back when you’re done.”
There is evidence that he is not a blank slate. He dreams a lot and talks in his sleep. He asked yesterday if I would read something he wrote “in the spirit”. He was very proud of it and said it was a lot like what the founding fathers would have written, Ben Franklin in particular. He said it was kind of about politics and the need to be a good listener, that silence isn’t necessarily weakness. It took a while for me to get all this from him by asking questions. I wanted to know how I was to read it if it was “in the spirit” and the conversation got too complex at that point. He stopped and admitted it was confusing, to him as well as to me.
I am glad that he does not seem to be suffering or unhappy – those are complicated thoughts, and he just doesn’t have them. I think it is God’s blessing on him that he doesn’t have the awareness of his own condition. He is not a complainer now, although that used to be one of the family’s sore spots. In the past he was more prone to notice one thing not to his liking and disregard a host of commendables. His nature has softened, become more reflective, accepting and content. He has been very open to God moving him in that direction. It is one of the blessings that has come.
One thing yet to be figured out is how I will find my own life around the demands of caregiving. At this point I spend a lot of time staring into space and trying to be ready for the next task. Trying not to run out of supplies, trying to remember medication schedules, trying to be creative in making our time together interesting, good. But it is winter, and there are very few expectations of me. My stress is limited to caregiving. That also is a blessing and I am grateful.
Home is a good place to be when it’s winter outside.
Because no damage was done, I will start with this event which I found somewhat humorous. Before I got to Maple Ridge yesterday, I received a call which started “I need to tell you what happened yesterday afternoon.” That’s not usually going to be a good report.
As it happened someone had left the control for the lift recliner where Dennis could find it. He often feels that making the chair go up and down relieves the burning sensation on his backside. This time it did more than that, as he lifted himself up and slid out of the chair. They had to pick him up off the floor with the lift. There were no bruises or pains as a result, and he looked fine to me when I arrived. I was grateful nothing had ruined our departure which took place a couple hours later.
They called all the staff, over the loudspeaker, to come say goodbye. Evidently that is a common ritual for this kind of facility.
A very resourceful friend found a tilt-in-space wheelchair for us – for free, no less. This made it possible to go home in a wheelchair van which was much less expensive than a stretcher by ambulance. The thirty minute trip was uneventful. I’m going to say that the driver left the minute we went through the front door at home because he didn’t even want to get asked to help. Not that I would have asked him.
The husband trying out his “new to him” wheelchair, which you can’t really see because he does fill it up perhaps a little too well.
The reality of being alone with my helpless husband had a hint of panic associated with it, I admit. But I hooked him up to the rented Hoyer lift and promptly found that it did not lift him high enough to easily leave the wheelchair. Another discovery was that he was not going in the recliner where I had envisioned him spending half of each day. It was too wide for the legs of the Hoyer.
It wasn’t a situation quite as bad as someone having to lift a car off a trapped passenger, but I was surprised that I was able to get him on the side of the bed, unhook the Hoyer, and finally get him straight and lying down. Surprised and tired. It was interesting how he was silent, bent nearly double in the sling, during the whole event. I think God has blessed him with limited awareness of any of the situations he’s in.
He and the cat “re-bonded” immediately, which was very nice to see. He also requested coffee with cream as soon as I had raised the head of the bed.
The rest of the evening was spent putting things away, trying to remember where I had put the things already put away, figuring out the medication and feeding schedule, and meeting a new caregiver who came at 6 pm for a couple of hours. More about that another time.
Since I had never spent a night with him since his “healthcare incarceration”, I did feel the need to sleep close by so I could see how he behaved. That is to say that I did not sleep much but spent most of the night listening to various levels of gurgling and snoring. I think I have learned that he remains quite still and does well when the head of the bed is raised. I believe he had a good night’s rest, but I decided not to ask him just in case. It was enough that he remained alive after his first night at home. We did it.
It’s the first day of December, and in honor of the new month I want to move forward and record our next adventure. The last four months since the husband’s stroke, have been full of hospitals, rehab, and nursing home for him. For me, it’s been hours in the car traveling to keep an eye on his condition, his progress, his caregivers. I’ve spent very little time at home and didn’t feel like doing much when I was there.
So, that’s all changing tomorrow. I can’t believe tomorrow is nearly here, at last. We will be packing up and leaving the nursing home at 2 pm to travel the half hour to our home at Par Place. Some of our transfers took two hours from start to finish but for some reason this one has taken ten days. I have been pushing and being the “squeaky wheel” the whole time – ever since I became convinced that Dennis would be better off, and happier, at home. There have been obstacles in our path, and one after the other, they have melted away.
The new life, well, I debated whether to call it new or more specifically, different. The different life for me will be staying at home and being a full-time caregiver. Hopefully it will give Dennis some consistency and more attention.
However, there is the question of whether or not we can actually do this as well as we would like. I’ve put a lot of thought and effort into getting equipment, supplies, formula for his tube feedings, and helpers. Most weekdays I will have help for two hours in the morning and two hours in the evening. I have friends who will come and give me breaks for exercise, and appointments around town. B
ut he is quite helpless, weak, and often disoriented. All his meds and nourishment have to go through the stomach tube (PEG tube). He is bowel and bladder incontinent. He will have to be moved with a Hoyer lift from his bed to his recliner or wheelchair. He sleeps most of the time. Fortunately, he is still himself on those occasions when he wakes up and talks. He knows me and his friends. He remembers that he is coming home on Friday.
So, because this may be the last thing he and I do together, I want to remember how it went, what we said to each other, and how it felt to know that life might very well be coming to a close. We have talked some about these things, but only recently has he at last confessed that he couldn’t think well enough to be in charge of his own health care. “I trust my wife”, he told the Hospice nurse.
Although we had the conversation, and an evaluation, we won’t be getting help from Hospice. They won’t accept him as long as he has a feeding tube, sorry but those are the rules. I was upset for about five minutes and then remembered that God had been asked to lead and direct, and he is faithful. I was then relieved that Dennis wouldn’t have to be affected by their rules. One less decision that I would have to make.
Every day in December, to write and remember, that is my goal. So, more tomorrow. I’m sure it will be an exciting day…
I can’t bear to show you a picture of Dennis. You get a pretty sunrise instead.
We have not been here before. The husband’s experience with Lewy Body Dementia has been atypical – no hallucinations, personality change, severe memory lapses, or all the other nightmarish things I read about in online support groups. But this stroke and subsequent hospitalizations have taken him down.
It was reasonable to think that he might recover some or all of his pre-stroke abilities, like other stroke victims do. And he did. He got back to breathing unassisted, verbal communication and basic movement and strength in his arms and legs. He was motivated to work hard and was able to express that. He talked to friends on the phone, gave feedback, joked with caregivers, noticed his surroundings.
Even a week ago, he responded to the move to Maple Ridge pretty well. Then came the day I wrote about last, when his lethargy increased and he went nearly comatose. This was the first time a urinary tract infection had affected him like this, something I have read about countless times in the support groups. The day after his two trips to the ER, being started on antibiotics and given a new feeding tube, he was understandably tired, but seemed to rally a bit. He was cooperating with the therapists. We played catch with the beach ball.
Yesterday and today he is once again silent and not communicating. I have to work to stimulate him enough for his eyes to slowly open and stare at me. A wet washcloth, touching his face, turning up the hearing aids, sitting him up in the bed, deliberate and focused speech – all this gets very little response. He is stiff, rigid and difficult to position in bed. There is the perpetual lean to the left that he’s not able to correct as well as he did a week ago.
What happened? Am I seeing the dreaded progression of the dementia? Are we on the Lewy roller coaster? Or is the inconsistency of his care at the facility having something to do with his condition? Will he go in and out of this behavior or is it permanent? So many questions, so few answers.
I’m talking and thinking the language of this answer-less world all day. I recount the day’s happenings to friends, my mom, my daughters, my brother, my pastor, even the nursing home employees who will listen. I’m telling God what it’s like to sit and look at this shell of the man he gave me. I’m constantly going back in my thoughts to this situation we are in.
If he has declined because of the inconsistency of his care, then I need to bring him home. I can be consistent if nothing else. If he has declined because of the progression of his diagnosis, then I need to bring him home, because these may be his last days. Either way, the comfort of being home and of having someone respond to his needs will be the best thing for him. He deserves more than what he is getting now. I think I am ready to bring him home.
Hope in the Face of Dementia 