As his imaginary world becomes more entrenched the husband is always asking me where his dog is. He mentions this dog at least once a day, and this morning it wasn’t just a curious inquiry, it was a need.
It was early in the morning and he was being moved and cared for, but it was upsetting to him. The words were quite clear. “I need my dog.” It was repeated with conviction. “Where is he?”
I have gone the route of explaining that we don’t have a dog, but that he has seen a dog in his mind and that’s okay. That doesn’t seem to help lately, so I have begun telling him that the dog is probably outside since it is not in the house. People take their dogs out in the morning – they have to pee. His dog does too. He wants to know if I can see him and I say no. I tell him not to worry because he has told me himself that the dog is very smart.
Eventually he will ask for the cat. I can produce a cat. He will hold Shadow on his lap and feel her and this morning he settled down. I am grateful that she does cozy up to him and sit on his lap quite often. She is little and black, like “the dog”.
My theory has the dog being important for several reasons. The husband needs unconditional love at a time when he knows he is unable to give back. It also comforts him to feel responsible for a creature, to still have purpose. Lastly, I don’t know, maybe he always wanted a dog when he was young and never had one. He has always enjoyed some things about the dogs we have had in our years together, but he didn’t have the need that he does now.
His condition continues to decline. I feel there is less engagement overall. There is more confusion, more resignation. One morning last week I asked him if he was okay as I often do when he’s had a coughing spell or seems upset. “Not really.’ he said. He also has started asking me “Am I confused?” These are new admissions for him.
Lest you think that he does a lot of talking, I am recording here most of the significant conversations, and there aren’t many of them. He doesn’t usually talk when we are working with him. His eyes are closed much of the time. He unfailingly produces a smile when asked. Every now and then something will make him laugh. This morning when I told him the dog was outside “taking a leak”, as he calls it, he laughed and said “We’re doing the same thing together.”
Today had a nice start to it. After going for a coffee at Mom’s I returned to Dennis and started our morning routine. I usually ask whether he wants to get up in the recliner, even though I make the choice myself. I think it’s good for him to be more upright for a while, and also gives me a chance to change the bed linens if they need it. Today he said “yes”, and it was because he wanted coffee. Coffee is the only drink he gets, other than mouthwash and water, and it evidently is tied emotionally to normal life in a very important way. He asks for it often, even though it only amounts to five or six spoonful before he is tired.
As we sipped our coffee I told him it was my birthday and invited him to say the greeting to me. He said it clearly and I was thrilled!
“Oh! You are really talking good this morning!”
A surprised look, as if I would ever think otherwise.
“So, since it’s my birthday, what month is it?”
“and what date in April is it?”
After a long pause which I thought might not ever end, “Eighth”
Again I was amazed at what he can dredge up out of the usual garbled and confused jumble that his mind has become.
Unfortunately these times are happening less and less. Dennis often has episodes of anxious behavior. Loud, rapid breathing, agitated hand and foot movements, and some loud vocalization’s occur even though his eyes are open and he seems awake. He hands me imaginary somethings and asks me to put them in the box. He joins in a conversation when the other caregiver and I are talking and I assume it’s something relevant to what we’re doing, but no. He wants to know if I’ve cooked salmon, or if I’m ready for the representative from Rhode Island to visit us (what?!). And it’s often the dog that told him to say that – the dog we don’t have but he sees right there in front of us.
A couple of nights I’ve treated this confusion with a sleep medicine, but I have to wonder if he’s more confused after he wakes up. He’s also having signs of pain, which he mostly denies feeling. He calls out loudly and pulls his legs up. Today, after one loud outburst, I asked him if he felt pain and he finally said yes. I asked him where the pain was and he said “my heart”. This is new. I’m not sure how accurate his evaluation is. but it is significant if only because he is usually denying any pain.
I’m getting very tired. Daytime naps are now a must.
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.
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.
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?”
“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?”
“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…
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.
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.
“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.
– 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.
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.
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.
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.
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.
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.