I wake up suddenly. It is1:00 a.m., but it’s not very often he actually attempts to call my name and I can’t wait to hear what is happening.
“My pillow.” (said in his soft thick tongued voice which sounds almost like an accent. He never used to sound like this.)
“Oh, your pillow is on the floor! You lost it. Is that better?” (after arranging his head on the pillow again).
“I’m hungry”, he says, as he reaches for my hand.
“Oh no, and I’ve already given you extra before bedtime. I can give you some water though, and maybe a little “food” with it, in the tube.”
I warm up the water and take the leftover formula out of the fridge, load the bag and prime the tube, hook him up and start the drip. He wants to talk more.
“Are you happy?” (Something he’s never asked before).
“No, not really. I’m sad that you’re sick.”
“I’m not sick.”
“It seems like you are, but are you happy?”
“Yes, and I want a cup of coffee. Can you make a cup of coffee?”
“We don’t usually drink coffee in the middle of the night, when we want to sleep.”
“It would make me very happy if you would make me a cup of coffee.”
I can’t believe he’s asking this in such a sweet, almost begging manner. Of course I will make him some coffee. I do the Keurig thing and take it over to him. He has a spoonful.
“You can take a sip” he says.
“I’m going back to bed when we’re done so I’m not going to have more. I took a sip just to make sure it wasn’t too hot for you.”
“I called you here to see if you could make sandwiches for the men.”
This is an odd twist and I’m not sure where it’s going… “what men?”
“The men out on the street. I thought maybe you had sandwiches in the freezer and we could give them some.”
I remind him that he called me to get his pillow, and because he was hungry, but he remembers none of that. After I tell him again about the stroke and how his body doesn’t obey his brain anymore, he tells me I’m exaggerating. I count the months since he’s been unable to walk, or eat or do anything for himself. He stops talking and I ask him why – it’s because I’m arguing with him.
Asleep again.
I can tell the feeding is making him sleepy. He says his stomach feels better. I tell him that it was nice of him to think of hungry men on the street and want to feed them. He had about four tablespoons of coffee during our conversation, so I put the rest away, cover him, and turn out the light.
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.
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…
Yesterday’s thought provoking incident happened around supper time for us. The family had scheduled a Zoom conference to do some advance planning for our summer reunion. I came over to the husband who was sitting in his lift chair with the tv on, his eyes were closed. I told him I was going over to Mom’s house to help her get on the Zoom. She is always confused about computer events.
He opened his eyes and listened to me but had such a blank expression that I started over and reminded him of the details, the Zoom, of the reunion we were planning, and watched him get totally confused by it all. He said so, repeatedly.
“I’m confused. I don’t know, I’m just confused.”
He couldn’t find more words to describe his mental state, and that alone was causing him concern. I could see that he was getting frightened.
“Can we pray about it?” He finally asked, shaking his head. So we did.
He then decided that the best thing would be to go back to his bed, even though he had only been up about half an hour from his last nap. I watched him closely as he went to the bathroom, took off his glasses and hearing aids and laid down. He was a bit confused even in that routine. But he slept for a couple hours, got up and ate supper, and apparently felt more himself.
What was going on there? I don’t know. But I realized that I was past the point of rushing him to the ER for stroke intervention, or any other kind of help. He didn’t ask to go either. Weird changes have become so normal. Some of them I’ve just read about and others have actually happened to us. Once he told me he couldn’t see the food on his plate and wondered what was happening to his eyes. Other times he has decided not to go out to church, which he normally loves to do, because he is feeling “foggy” or hasn’t had a good night.
I wish I could have the conversation with him about what he does want to have done at times like this. The trouble is, he still hopes for a touch from God to take away this disease. He wants to live…. Who wouldn’t, if they were well. I wonder if he would understand that I think the hospital would only prolong his life with LBD. I wonder if he would agree that his present state is not the picture of quality life. I wonder if he would feel like he has lost his advocate.
If God plans to heal him of this dementia, couldn’t he also heal him of a stroke, or an infection, or any other life threatening ailment? He could, and I am content to let him (God) decide when those things come up, without outside interference. But what kind of caregiver, what kind of wife, does that make me? I’m just not sure. I think God and I are at peace with him giving me directions for these scary moments. I will need a nudge one way or another. I will need help in not feeling judged for my decisions.
Yesterday I sat down with a cup of tea and a cookie. I thought and thought about these things and all I could come up with, as I finished the last crumbs, was that I needed another cookie.
Hope in the Face of Dementia 