Occupational Therapy, clothes on, in a chair, ready for work. Thumbs up.
Progress Points: Week One in Rehab
New routines are getting in place at Miller Dwan Rehab Hospital.. OT early in the morning to get dressed, brush teeth, ADLs. Speech therapy. Off to the gym for an hour with PT and then back to rest. OT and Speech again in the afternoon. Evening rest.
Off oxygen and still doing well.
Blood pressure remaining stable.
No more finger pricks for blood sugar testing.
On a new mattress that avoids painful pressure points.
Allowed to sleep at night, undisturbed if he doesn’t need anything.
Beard got trimmed (yay!). Wearing real clothes during day.
Having real conversations with wife. Voice getting stronger.
Getting “known” by staff.
Got to ride stationary bike in PT, with help.
Room got personalized – the “love” poster from family and all the cards are on the wall where they can be seen.
Sayings
When told rehabbing was his new job: “Take this job and shove it.”
Dennis has a new job. I hope he’s up for it because it won’t be easy or short term. His job is surviving rehab.
Yesterday I made my way from the parking garage at St. Mary’s Medical Center, across the skywalk to Miller Dwan Rehab Center. Finding my way in a new place is always an adventure. Knowing and following all the rules challenges me, especially since Covid. Hospitals are built with mazes as their model and so many of the halls look the same. And it’s not like they have a lot of restrooms for the public either. I drive 90 miles to get to Duluth so I make it a point to find them.
A rehab hospital is an entirely different experience from an acute care hospital. I was so relieved at the quietness, low key atmosphere, soft voices and lack of hurry. The husband has a small private room with glass sliding doors, and it’s right in front of a nurses’ desk. He has a window and a nice bathroom. Since he still needs a lot of care, all the regular hospital extras are there – oxygen, suction, monitors and computers, lifts and a fancy bed.
The social services worker assigned to Dennis talked with me, both to get information about our home situation for eventual discharge, and to give information about his stay. We already knew he would be getting about three hours of therapy per day from physical therapy (PT), occupational therapy (OT) and speech language therapy (SLT). There will also be talks with psychologists, chaplains, social workers and of course, the doctors. They all meet weekly on Tuesdays and evaluate each patient’s progress. The social worker promised to give me a report each Tuesday after their meeting.
At this point, they estimate Dennis will be with them for 60 days. I am not surprised that it could take a long time because Dennis is at zero on the independence scale right now. I am surprised and relieved that they are willing to take him for that long as it will give me time to prepare for where he goes next. I am hoping our insurance will cover that amount of time. I haven’t checked yet, and I guess that will be my new job.
Good to be wearing T-shirt and pants again.
No time was wasted by the therapists. They have all had two or three sessions with him during these last two days, mostly to evaluate and set up their plan. He is an exhausted guy and it worries me to see him looking and acting so very tired. Before the stroke he was walking, talking, feeding himself and doing many of his daily activities without help, but I also have to admit that he was already tired and taking frequent naps. What kind of improvement can we even hope for now, given all that he’s been through in the last four weeks? But this is humanly thinking and I thank God that we are not limited to that.
I can tell that Dennis has had a lot of time to think, at night especially. He is often uncomfortable, or cold, or sore from his position which he cannot change himself, and unable to find his call button to get help. As his mind clears he is more aware of his predicament and has started looking for someone to blame. He has landed on himself.
“If only I hadn’t been so stubborn about wanting to do it my way. I didn’t want to take those blood pressure meds. This is all my fault. ” I did my best to talk him out of that one, reminding him that even when he took the pills he had alarming hypertensive spikes, followed by hypotensive lows that nearly made him pass out. But, I totally get what he’s feeling because I also went down that road, feeling that I should have made him take his meds. It could easily be my fault too.
When one of the therapists asked how far I was driving and how often I came, he remarked “I don’t know why she stays with me.” I have never heard him say anything like that before and was actually a bit shocked to hear it. I told him I was sticking around until January because I wanted to be able to say I’d been married for 50 years, then I’d be leaving. Did he laugh? I couldn’t tell.
So you see, he is having to deal with some heavy emotions. He hasn’t been one to admit to depression, even since the Lewy Body dementia diagnosis. I am hoping some of the rehab deals with the natural depression that anyone would feel if they suddenly became weak, helpless and out of control in every way. And I will be reminding him to look ahead as God guides him into a purposeful future.
“I think I saw a green cat, sitting on my shoulder. Was that a dream or a hallucination?’. Maybe, I thought, or it could have been the little guy filled with rice (as a heat compress) that Esther bought and gave to you when she visited.
Dennis was in the ICU for 27 days. I felt like I was there too, and I was, nearly every day. Of course, the respiratory arrest and having to go on the ventilator was the worst complication of his stroke. The other important issue was his blood pressure, which was probably the cause of his stroke. That had to be stabilized to prevent another brain hemorrhage.
Unfortunately, unstable blood pressure has been one of Dennis’s problems for a long time, and was probably one of his first symptoms of Lewy Body Dementia. The IV med he was given right away, worked very well but as the amount was reduced, he would begin to have episodes of hypertension again and it would be increased. Eventually he was started on an oral med that was crushed and given through the nasogastric tube. When that didn’t take care of the spikes he was put on a second oral med. Then the amount of the first med was doubled. By his last day in ICU he was taking Norvasc 10 mg, Coreg 6.25 mg, Ismo 10 mg, Cozaar 100 mg, and a diuretic, Lasix 20 mg – all of which were for his blood pressure. Pretty impressive for a man who doesn’t like to take pharmaceuticals. He still has a spike now and then, but it was decided that he could have a higher “normal” as long as it didn’t result in 225/125, like it was on the night of his stroke.
Having weaned off the ventilator and having stabilized blood pressure readings for a couple of days, he was given a second swallowing evaluation. He didn’t do very well. That means he will be a long term tracheostomy patient to protect his lungs. It means it is still not safe for eating or drinking, two of his only remaining pleasures in life. But medically he was ready to move to a step down unit.
Every change causes some measure of anxiety. For me, the worry was that he wouldn’t be able to get help when he needed it on a unit with higher census and less staff. He still wasn’t able to move either arm enough to find a call light. He wasn’t able to move himself in bed at all. He couldn’t turn his head to see anything he tried to locate, he couldn’t speak unless someone deflated his trach cuff and placed the PMV valve. He was often lethargic, but becoming more aware of aches, pains, stomach rumblings and the need to cough.
I was called one night at home and told that he had been moved to a medical unit on another floor. The nurse working with him informed me that he was on the same kind of monitoring as in the ICU, and had a private room with a camera that allowed supervision at the nurse’s station. It actually sounded pretty good to me, and I was glad that he would be in a private room where it would be quiet and less confusing. I visited the next morning and was very pleased with his proximity to the nurse’s station and the attitude of the staff taking care of him. We practiced using a squeeze ball call system until he could work it correctly, and the PA directing his care gave permission for him to have the PMV valve in as long as he could tolerate.
There are always more mountains to climb however. The PA also told us that his inability to manage his secretions meant that he would need a more long term solution to nutrition and meds. The nasogastric tube could be replaced with a PEG feeding tube going directly into the stomach. This might also help his ability to swallow since it would mean one less tube going down his throat. He and I both felt this would be an improvement, although it will mean another exposure to anesthesia. It will take place tomorrow. I hope it won’t put him back into lethargy and brain fog, since we have just begun to make progress to more wakefulness and clarity.
In the back of my mind is the question of where he will be taken care of after hospitalization. They are already talking about nursing home placement and I know this is not going to be fun.
Dennis was admitted to the Neuro-trauma ICU of St. Mary’s Hospital in Duluth MN, 90 miles from our home in Hayward. It was past visiting hours but after they got him settled in they let me come in and see him. I watched them do neuro checks on him. He was weak on the left side but there was movement, and his face didn’t seem asymmetric. He was joking with the nurses, telling them all about how it felt. He was still on IV medication to keep his blood pressure in a safe range.
I stayed overnight with a friend and was back the next morning. Not much had changed as they tried various meds to keep his blood pressure low. Another CT scan showed there hadn’t been additional bleeding from the night before. The free blood was kind of migrating around though, like a bruise that changes shape as it ages.
Thursday, still in ICU, Dennis was more lethargic. He would open his eyes if asked but he looked sick. They were having a hard time with his blood pressure and giving him higher doses of IV med, as well as fluids and electrolytes. Friday when I visited, I had a hard time getting Dennis to wake up. He didn’t interact with us. It was like he was sedated. It was explained to me that this was a common progression as inflammation was often peaking on the second and third days.
That night back at home, I got a call from the hospital. Dennis had been having a hard time breathing. And then, as they were suctioning to clear his airway, he actually stopped breathing. They intubated him and put him on a ventilator. I drove that night to my friend’s house again, wanting to be close in case anything more happened. As soon as visiting hours started the next morning I went to get the story. This was day #4 in the ICU. He looked very peaceful now that breathing was not so much work.
I couldn’t begin to imagine what was going on inside his head. He was somewhat more alert, opening his eyes a lot more on days #4 and 5. He could still follow orders to move fingers and toes. The biggest difference now was that he could not talk, being intubated. I could tell there were things he wanted to say but it was getting very frustrating.
As it got closer to our family reunion, August 4 – 8, people were arriving at home. I spent part of several days at home, but was at the hospital for hours every day. There was not much I could do except let the staff know, from experience, what Dennis was like and what I thought he wanted. There were conversations about resuscitation, feeding tubes, and DNR status that were kind of scary, but fortunately I knew Dennis wanted to have every chance to live.
On day #7 my brother Gary and Lyn went with me. It was upsetting to them, and frustrating to Dennis. He was very tired and we didn’t stay very long. Tubes and wires everywhere. Alarms going off. Phones ringing. Confusion of loud voices from the other half of his semi-private room. We were starting to understand the term “ICU delirium”.
Things seem to go on forever the same, until they suddenly don’t.
It was a pleasant summer evening. In an attempt to improve my own perspective, I was out having dinner with a couple friends and my mom, in a noisy environment, when the waitress asked if it was my phone that was ringing. It was.
Dennis had been found on the floor by the helper who came to fix his dinner. She called my brother and together they called an ambulance to get him to the ER. He had signs of a stroke.
I don’t think he was on the floor for long, and he had no fall injuries. In fact, in the telling, he was very proud of how he had let himself down carefully so he wouldn’t get hurt. Did I not get him an emergency alert necklace for just times like this? Yes. It spoke this message to him “Fall detected, press and hold to cancel”. So, he pressed and held and cancelled. He was planning on getting to a chair, getting himself up, and recovering. He didn’t want to fuss with the outside help.
He was taken to the ER in our local hospital. They confirmed a hemorrhagic stroke with a CT scan and immediately called an ambulance to take him to a stroke center 90 miles away. I talked with him before they left. He didn’t have severe symptoms – just some left sided weakness and loss of skin sensation. Maybe his speech was a little difficult to understand, but he mumbled a lot anyway and this wasn’t much different.
I followed the ambulance up and was able to see him safely established in his room, hooked up to all the necessary monitors. His blood pressure which had been 225/135 was being carefully kept below 140/90. Another CT scan that night showed no further bleeding apparent.
Things had changed, suddenly. I always knew stroke was a possibility with his blood pressure spikes, which happened frequently. He had stopped taking his meds because he had a period of relative stability without them. He didn’t like taking pharmaceuticals, and I didn’t argue with him since the meds seemed to make no difference. He was equally unstable with or without them. In hind sight I wonder if we could have prevented this, but that is not to be known.
So, on July 26, 2022 Dennis traded his recliner for a $50,000 bed in a neuro trauma ICU. And this was just the start.
This was not the $50,000 bed but it was a pretty expensive recliner.
I say cautiously because last summer is all too vivid in my memory. The plague of anxiety, the delusions, constant watchfulness and attempts to reassure, living in weird circumstances trying to avoid electricity and evil spirits. Oh my.
And then it went away, rather suddenly. It was as if he just decided he was wrong and didn’t feel any of the harmful sensations he had been feeling.
We have had a fall, winter, and spring of stable cognition and emotion. I am thankful. I cannot know for sure why it’s been easier. I guess I don’t need to know. We are continuing to do what we have been doing, in case some of that is helping. From time to time Dennis thinks of adding or subtracting a supplement, and if I don’t think it makes a lot of difference I don’t argue about it, although I do get tired of the chore of filling the daily pill bottles.
Dennis elects to stay home more and more. He doesn’t always go to visit the relatives when I go, or out to eat either. With COVID 19 restrictions he has gotten used to more inactivity – no church, no trips to library or grocery store. TV is his entertainment and he watches it so much he has adopted TV people into his family. I often find him with the TV on while he’s also listening to something on his phone. But he is interested in what he watches and refers to a lot of it as his “research” on various topics.
He’s done a lot of checking up on old friends from our days of teaching at Ambassador College. He calls and follows the trail from one person to the next, finding out how they are. He sometimes picks up his horn and plays something. He tries to take one or two short walks every day, or rides the stationary bike. He knows exercise is important but he often is more comfortable sitting still.
His biggest problems are the constant tremor in both hands now, overall weakness and instability, regulation of his bowel and bladder, some hypertensive spells, diminished sight and hearing, and the inability for planning or complex thinking. He does some of his own hygiene care, but I do have to shave him and remind him to shower and change clothes. He can get snacks from the fridg, but his meals are up to me most of the time. He’s okay by himself at home and I can leave him alone while I go to the garden or to Mom’s for several hours at a time. All in all, life is quite manageable.
Things I notice:
It takes him a long time to come to his chair at the table, pull it out, position himself in front of it, and put his body down. Long time = almost forever.
His skin problems are still severe. He is always scratching skin flakes from his beard, neck, head. His eyeglasses are always so dirty I don’t know how he sees through them. His shirts are always covered with skin flakes and unsightly.
The shuffling is his normal walk now. He’s started a forward lean that sometimes propels him forward faster than he wants to go. He looks old and frail when he walks, his hands shaking but not moving normally with his leg action.
His voice is hard to hear. He talks slowly, so slowly, and his words don’t have edges that make them easy to distinguish. I’m always saying “what?”.
He takes a morning nap and an afternoon nap most days.
So from day to day, not much has changed for the last few months – which is why it’s hard to think what to write. We are mostly praying that he will be able to go to Seattle for a wedding in August (youngest daughter) and another wedding in North Carolina sometime after that (oldest daughter). Travel is not something he looks forward to anymore so the planning will be challenging.
Is this going to be the end of our half year of stability? I hope not, but things do seem to be getting a little weird lately. I really think the protocol the husband has been on has done good for him so it will be a disappointment if we run into trouble again. Going backwards is not fun.
In November when he had the DVT, he was put back on blood pressure medicines because he was very hypertensive. An additional one was added a month or so later because he was still running high. Well, his readings started coming down and then he began having times when it was low enough that he would feel dizzy and weak. I took away the diuretic and that helped somewhat. Now it is low more often and we have started cutting the last BP med in half. It might be that we are back on the autonomic nervous system “roller coaster”.
He has also noticed more hand tremor, and it is affecting both hands now. Because all this is worrisome to him, he has started back on his research in earnest. That, and watching all his favorite TV preachers every day keeps him quite occupied. He is still thinking logically, and his temperament is good, but I’m thinking this could get very obsessive, if not delusional. I’m so hoping NOT because…
I’m taking some time away in March to be with my daughter in Seattle. My brother Gary and his girlfriend Lyn are coming to stay in the house with Dennis. I’ve assured them that he doesn’t need actual care, just some oversight and help with meals and questions about where things are. Nothing about travel is easy here. With the arrangements I had to make to get to the airport, Dennis will end up being by himself for about a day and a half before Gary arrives. There are others who can look in on him. I’m counting on this to be okay.
At first I thought we might both go on the trip and Dennis was surprised and trying to adjust to the plan. When I told him he didn’t have to go, he was somewhat disappointed, but also pleased that I thought he was well enough to stay home without me. I don’t think it’s making him anxious. I could be wrong.
New things include some fancy probiotics and liposomal glutathione which the functional medicine doctor (Nan, she asked to be called) has prescribed. Correcting what is happening in the gut is very important to her. We are also giving “gluten free” a trial. The dining room table has a growing collection of bottles and containers now, which I’m not too happy about, but it’s too much trouble to put it all away in between uses.
I should get him walking/exercising again. We did so well for a week or two and then we started having to avoid germs and being around people with colds. We have a family member in cancer treatment who has low immunity. I know we can’t stop living normally – she wouldn’t want that – but at the same time it would be awful to be the ones causing a dangerous infection of some kind.
Thanksgiving has come and gone. December is almost over as well. This is our second winter since the diagnosis and I was thinking over the past year and comparing our present with the past.
Dennis is thinner, less physically active and a bit more dependent, but not drastically changed. I think I notice Parkinsonian symptoms increasing faster than anything else. His hand trembles almost all the time when he isn’t holding something or doing some motion. His face is rather mask-like and his voice is soft, monotone and often hard to distinguish. He always shuffles now, especially outside when he’s trying not to slip on snow or ice, but also in the house. And he is sooo sloooow.
Since the hospitalization last month he has not had any trouble with thrombosis – but, of course, he is on an anticoagulant. The doctor says he may have to stay on it indefinitely. He has had continuing trouble with his blood pressure being high and we are still working on getting that stabilized.
He has been much more content to stay at home by himself. He watches a lot of TV, talks on the phone to anyone who answers his calls, and does a lot of thinking (and a few naps). Yesterday I was even able to leave him at home while I took Mom to the doctor for outpatient surgery. He found his own breakfast and lunch without having to call me, which is an accomplishment for him.
One thing we have added is a membership in the senior fitness program at the hospital. He uses the stationery bike when we are there, usually for 39 minutes and then he is done. I have to instigate our trips there and I intended to be faithful at that but no, haven’t done so well.
December is his birthday month. In fact, his day is the day after Christmas, which means he’s always felt a little anticlimactic. It’s a good thing he doesn’t have expectations of grandeur. We usually have to remind him that it’s his birthday. This year both daughters are coming to celebrate with us. They have been faithful visitors since the diagnosis of Lewy Body Dementia. He will not have a hard time enjoying them since he is still quite good cognitively. I got him a couple of things too, but I cannot say what they are because I want them to be a surprise.
The thing that disturbs me most lately is that I feel emotionally distanced from him. I don’t know if it’s my problem or his, or a combination. Some days I spend time reading to him and that seems good, or I take him to exercise and to lunch, also good. But a lot of days I would rather spend my time elsewhere. His interests and topics of conversation are very limited and not very interesting to me. I feel like he talks at me, not with me. Once he starts it’s hard to get him to stop and I often just walk away without him seeming to notice at all. He just keeps talking. I seldom want to watch TV with him. I’m thankful I have a room to retreat to, where I can read or talk on the phone or watch a movie. I know I’m neglecting his social wellbeing, but I am not sorry enough to do something about it.
I have asked him to think about what he wants to do for our anniversary in mid-January. He isn’t saying much.
Bedtime is often early – 7 or 8 pm – after an early dinner. Around
9, just when I think I will have some undisturbed time to read or write, I will
hear him get out of bed and shuffle to the door and peer around the corner at
me while I sit at my desk. He will do a silly little wave and announce his
first wake up of the night.
Tonight, he came out and sat down next to me as I wrote. He
waited until I looked at him and then told me that he wanted to talk to me. Conversations that start like this are often
ones I don’t like.
What he wanted was for me to document “his phase” that he
was in. It’s a problem that happens at night and this is how he describes it. It’s tension that keeps him awake, a bit like
restless leg syndrome. He feels that his
blood pressure is high and that he needs to have more magnesium water. He wants very much to sit and resolve this
tension but knows that he must do something active to resolve it.
I suggested he take his blood pressure to verify what it
was, but the act of getting up and putting the cuff on to take the reading was
something he said would cause more tension. He didn’t want to do it but finally
relented if I would go get the cuff and put it on him. (And yet he knew the
next thing he needed to do was his high intensity exercise, which involved
moving too. He admitted the contradiction.)
His blood pressure reading was 167/95 with a pulse of
49. He got up to do his exercises, which
consist of mostly arm movements and a little bit of squatting for four minutes,
but I doubt he spent that long at it. He
insists that it be recorded as his hands begin to tingle, and he feels the stimulation
up the back of his neck, and of course, he gets tired and breathes a little
heavier. All this is important to note
because it shows that you don’t have to have a lot of exercise to get what he
calls “nitric acid dump”. This is an
exercise protocol he learned from an online coach named _______. After exercise
his blood pressure was higher 183/106, pulse 58 which he predicted would
happen. After resting for a while and drinking more Mg water his pressure was back
down to the pre-exercise reading.
From reading, he has a mental construct of what he thinks is
going on in his body. Taking his blood
pressure puts pressure on his bladder.
Autophagy starts taking place a certain number of hours after he eats
and makes him have to clear his throat and spit, makes him have to urinate,
makes him need more and more magnesium.
Something makes him feel that the whole process is speeding up and
requiring more magnesium. He measures how much he thinks he needs by how much
he is drinking. He used to sip on one 16
oz. bottle of water with 300 mg. magnesium per day and possibly another one
during the night. Now he is asking for at least two and sometimes three. He asks because measuring the minerals is
difficult for him. He shakes and spills some.
He believes the night time spitting and urinating are signs
of autophagy, which is most certainly clearing the misfolded proteins out of
his brain. He feels like a scientist,
taking part in a ground breaking experiment, which must be recorded. (I don’t
know how to explain the drama involved in his every move, every word of this
life changing stuff…)
My thinking is overwhelmed. It is the night before the
husband’s retirement celebration and I am nervously trying to think through all
his medical concerns. I know I will be asked tomorrow about how he is faring
and what news we have. It is complicated.
The doctor we talked to today spoke so fast and jumped from
one topic to another without explaining the relationship. I had to go home and
google the condition to understand much of what he was saying. It was like he
was on speed or something. The short of it is that the husband does have a type
of heart failure, but not the kind that’s caused by a weak heart muscle. It is
the kind where the muscle can’t relax. It is stiffened, and that can be
causally related to hypertension (which he has) or sleep apnea (which I think
he has) or a few other things like A fib (which he doesn’t have). It can be
managed by treating the symptoms. He is already doing that as well as he can.
That is not to say that he doesn’t have the other condition
(NPH), but the consensus is that he should be seen for that diagnosis at Mayo
Clinic when we go up north. If he has NPH, he will need the specialists they
have there. My head is swimming from being on the internet all evening looking
at sleep apnea home tests and CPAP machines and applications for an appointment
at the Clinic. I don’t even want to figure out how these things are going to
fit in the schedule of the next two weeks before I’d like us to be heading out.
It’s too much.
Both daughters have their tickets for the family reunion.
People are posting their plans to attend. I am just hoping to be there and not
in a hospital somewhere with the husband. We talk daily with my mom and I can
tell she is a bit skeptical and wonders if we can pull this off. I’m trusting
my master planner has it all figured out, and I’m going to be okay with the
circumstances, as he arranges them. I think I appear calm, generally, but the
fact that I keep going to the refrigerator, or the cookie can is evidence of
what is under the surface. Food doesn’t exactly help how I feel but I crave it
anyway.
There doesn’t seem to be much time between trips these days.
Trips taking the husband to work, trips to the doctor’s office, trips to Good
Will, trips to the store. The good thing about having only one vehicle is that
the husband and I are together a lot, coming and going places. We are talking
in a different way, or rather about different things than usual. Instead of him
talking about fans and ventilation (thumbs down in my book) we talk about how
he feels about retirement, and the preparations for moving and other stuff I
find interesting and necessary. This is a good thing.
Hope in the Face of Dementia 