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.
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 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.
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 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…
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.
Freezing rain, snow showers, car covered with dirt and salt spray, gray skies, darkness before we are ready for it. It’s definitely November in Wisconsin. My daily trips to Spooner seem short by comparison but they still are challenged with this weather.
I am learning how different a nursing home is from a rehab hospital – something I knew in my head but experience emphasizes it. Some days I am dismayed with the care the husband is given. Some days I feel much better about it. Several days I have had to wake him up and get his care started without help. The weekend was actually frightening with the staff being stretched thin and several incidents happening. I wasn’t sure Dennis was getting his meds or his feedings on time or at all.
Today I arrived late in the morning and all was peaceful and calm, the room was straightened and my husband was dressed and sleeping in his recliner. But let me tell you about yesterday…
Somewhere between his speech therapy session, which I was told went well, and his PT session something happened to Dennis. He was much different, being unable to participate in his PT transfers, unable to keep himself upright, and not being responsive to questions and general talk. He stiffened and was hard to move and slept for hours without his usual requests for position change or the urinal. I wondered if he was having a second stroke. After a couple hours without improvement, it was decided to pack him up and go to the hospital ER for evaluation. The ambulance came and got him.
I will mention here that he didn’t want to go and had to be talked into it. He saw nothing wrong with the way he was feeling. I knew something wasn’t right but didn’t know what. I’m the one who has to think about him needing emergency care. Emergency care in the nursing home amounts to an LPN doing chest compressions while waiting for a phone request for a doctor to show up – no monitoring, medications or personnel familiar with running a code. I pretty much scared him into going by telling him to get evaluated or risk dying in his bed.
At the ER we got so much information over the next five hours. He had a urinary tract infection but the good news was that he didn’t have Covid, didn’t have pneumonia, didn’t have a second stroke or heart problems. He got a dose of antibiotic in his feeding tube and another ride back to Maple Ridge in the ambulance.
I went home and was settling down to sleep when the nursing home called to say Dennis was on the way back to the ER because his feeding tube had come out. I had heard a popping sound while watching the ER nurse give the antibiotic but I assumed she was familiar with the ports on his feeding tube. I asked her if one of them was the inflation port for the balloon that kept the tube in place in the stomach. She said yes, but didn’t seem concerned. The balloon had broken but the tube didn’t slip out until back at the nursing home when they moved him about.
Dennis got a new tube put in and two more rides in the ambulance. What a night. And, as I said, he is pretty hard to wake up again today, but with reason.
I find it hard to sit and watch him sleep. He is unable to wake up long enough to focus on anything or communicate more than a word at a time. I hope that as the urinary tract infection clears up, he will revive, be himself again and resume therapy.
Our setback matches perfectly with the gray, wet, coldness outside. It’s November.
It’s been 23 days in “swing bed” status at St. Mary’s in Superior. The husband has become accustomed to the people, the environment, the routine. So, naturally, it is time to change things up again.
Thursday, November 3: Care conference with the case manager, therapists, in Dennis’s room and with me on the phone was concerning. The physical and occupational therapists have noticed that he has trouble remembering steps and sequences for moving. He doesn’t seem to be able to build to a greater skill level because of that. He heard this report and later when I questioned him he agreed with their assessment.
The goal with these physical therapies has been to make transfers possible without mechanical help and multiple people. Dennis has muscular strength but he doesn’t know how to direct it when it comes to complicated (yes, complicated!) movements like standing up, or sliding over. He has reached a plateau. They feel he should transfer to another long term facility. His only remark was that it should be as close to home as possible. However there are no beds available in Hayward.
Friday, November 4: By the time I reached the hospital parking lot my plan for the day got scrapped. I got a call that there was a bed available in a town 30 miles from home. I had not visited this facility but decided to say yes to it, pending approval after I had seen it. Dennis and I discussed the move. He’s already dreading leaving this batch of new friends…
It is so confusing to navigate the rules of Medicare. If it were not for the social workers and case managers that we have encountered I would not know what to expect. They are very good at keeping track of how many days are left at different levels of care, and how to keep Dennis getting some more time with the therapies he needs most.
One of the most improved areas lately has been his work on swallowing. He has steadily increased the time on the E-Stim device and the number of swallows he takes. I am glad that the speech therapist made sure he got one more evaluation with the fiber optic camera and it did show improvement. He was given the choice of having some soft foods like pudding if he was okay with the slight risk involved. But there is still more work to be done before he can consider having the feeding tube removed.
Tuesday, November 8: I visited the new facility in Spooner yesterday after my time in Superior with Dennis. It was neither greatly good or greatly bad. It’s hard to be specific about what makes some places clearly “nursing homes” and other places “hospitals”. Sometimes it’s the fact that many nursing homes are in older buildings, abandoned for their original purpose or dated in some other way.
Maple Ridge Care Center is a former hospital with several wings off a central nurses’ station. There are parts of the building that are completely unused. One section has been made into a daycare for the employees children. The outside of the building and the grounds are neglected, sidewalks and curbs cracked and crumbling, the foyer sports a rumpled rug at the entry and leaves and debris have blown in from outside. Doors in the hall are open showing offices with varying degrees of mess and disorganization.
The better aspects of the facility were the people working there. Many of them were young and appeared competent. The patients were mostly sitting around in wheelchairs watching birds in the small aviary or playing bingo in the dining room. Therapists were wheeling people back and forth after their sessions. It looked busy and fairly happy.
The room where Dennis is most likely to end up was large and empty. Some painting or repair had taken place and it hadn’t been refurbished yet. I could see it being a nice room, although it was in the long term wing instead of short term rehab. I’m not sure if there is a message in that, probably not. I hope they are getting it ready today since he is scheduled to leave Superior at 9 a.m. tomorrow.
I will try to be there to meet him when he arrives – they have open visitor hours 24/7. They also have some Covid patients that they keep in quarantine. They evidently aren’t having too hard a time with the virus. One other concern about Maple Ridge is that I’ve noticed it’s hard to get anyone to return a phone call. I will have to train Dennis to pick up his own phone when he gets there.
For anyone wishing to send a card or letter to welcome Dennis to his new place, the address: Maple Ridge Care Center, 510 First Street, Spooner WI 54801
It was the afternoon of October 13 when the husband left Miller Dwan for his new, but still temporary, bed a few miles away in Superior, WI. He’s had two full weeks and 3 days now to settle in. He’s met new people, gotten used to a new schedule, new practices and new surroundings. All of this newness would be hard for any of us if we were entirely dependent on others. Dennis has borne it well, maybe better than I have. He continues to do his best without complaint.
Because he wants to be done with the feeding tube and get on solid food again, the work he does with speech therapy to improve his swallowing is important. One of the first things the therapist did with him was to repeat swallow tests with observation through a fiber-optic camera. I got to watch and they reviewed the results with both of us. It is amazing to see vocal chords in action and all the different components of a swallow. We who swallow without giving it much thought have no idea what a marvelous design is involved. Think about it – a shared entryway into the body where both food and air have to be maneuvered and timed so as not to interfere with each other.
Unfortunately, the test showed that it still would not be safe for him to start eating any kind of food or drink, other than ice chips. It’s disappointing, but he is still working hard to strengthen those muscles with therapy four or five days a week.
The “swing bed” that he occupies is in a small hospital of about 20 beds. Surgical patients come and go. Because of that the therapists’ schedules vary from day to day. They spend roughly half the time with him that he was getting at Miller Dwan. He never knows when they are coming to him and whether he will have energy left to work with them. There is no concerted effort to get him dressed every day, or make sure that he is out of bed a certain number of hours. Staffing is often short – nurses are not sitting somewhere waiting for call lights to go on. They are quite occupied.
In spite of all this, the care is still good. The people are compassionate, kind and competent enough and, thankfully, Dennis does not need anything very complicated now.
He has had a number of new visitors in the last two weeks – friends from the past, from our church, and family members. These times are always emotional for him. His affinity for tears continues.
One day my friend Pam was visiting him while I was at home. I texted and asked her to tell Dennis that I would not be coming up the next day because I had made some appointments. He wanted to know what appointments. She had to relay to him that I was getting estimates for our funeral and burial plans. He then gave her one of his famous “deer in the headlights” looks, as if he did not know that needed to be done. But I will admit that it is a weird thing to attend to, even when you know it’s necessary.
In addition to his practiced looks, Dennis has taken to singing frequently to caregivers as lyrics come to mind. The last couple of days he’s been thinking about the song “My Grandfather’s Clock” . I don’t know why. He sang the first verse from memory
today while Mom, my brother Bob, his nurse and I were listening. He was crying but managed to get the words out. Truth, we were all crying, even the nurse. She kissed the top of his head and hugged him. All this to say that he is getting to people and they are seeing the gentle sweetness in him as he faces a seemingly sad and uncertain future. (It’s a sad song.)
And because he always tears up now when I leave, it is hard to walk out that door. As we were preparing to go today he said, “Oh I hate to tell you the song I just thought of, and I don’t like that it came to mind.” Of course, we had to know then, so, crying, he belted out “Hit the road Jack, and don’t you come back no more, no more, no more, no more.” On that note…