This journey began years ago, way before I realized what it was.
Why Me? Why Us?
I’ve heard it said that we are what we think.
I’ve heard it said that we are what we eat.
I’ve heard it said that it’s all up to genetics.
I think it’s a combination of all those things, some under our control and others not. I believe that God works with us in all of these things to create a life of a certain sort, unique to each person, and valuable to him.
Writing, My Therapy
I’m thinking about all of this because, over the last half year, I find that I’m living life with an awesome guy who now has a diagnosis of Lewy Body Dementia, LBD. Finding this out about himself was life changing for him. It has been life changing for me. It’s our journey together, but I need a place to share my thoughts, experiences and observations without affecting him emotionally. This is it.
I blog elsewhere, at shirleyjdietz.com, but the husband, as I often refer to him, reads that. I put things there that I want him to know. He pays attention to things he reads, almost to the point of having a photographic memory. I will probably write things here that might upset him, not in a disrespectful way but perhaps things that would be emotionally burdensome. He is a worrier.
To Encourage and Connect
In addition to working out my own thoughts, I want to encourage and connect with others who are having to get personal with the issue of dementia – Alzheimer’s, LBD or any others. It’s not an easy journey and it might help us to share our stories.
Good company in a journey makes the way seem shorter. — Izaak Walton
Last week I was very concerned about Dennis. His behavior was as if he had “checked out”. He wasn’t answering when people talked to him. There was a lot of vacant staring and, even by his own report, his perception was altered. I wondered whether there had been another stroke, or possibly, the dementia had taken a turn for the worse.
It all made sense to me when they told me that Baclofen, a muscle relaxant that he had been given, was being discontinued. I did not know that the doctor had prescribed it to see if it would help his rigidity. There are side effects associated with that med that can really mess with the head.
At the same time he had a bladder infection that was pretty significant and was being treated for that. Both the med and the infection could have caused the change in his condition. I was hoping when I saw him on Wednesday that he would show recovery.
Wednesday was a good day.
– He talked to me ALL DAY. What a difference. He participated in conversations with therapists and was so much more like the Dennis I knew.
– Therapies went well and he was able to show progress in several different tasks.
– He was alert and not napping all the time.
– Speech therapy decided to do another swallowing evaluation, scheduled for the next morning, because he seemed to be coughing less and swallowing better. He was so excited about this.
– He wanted to watch TV so we followed Hurricane Ian as it went through our former home area in Florida
Thursday was not as good as we had hoped.
– The swallowing evaluation, 8:30 am seemed to go okay, but when we reviewed the results at noon, we were disappointed. No progression to a diet yet. He is still losing the fluids down his airway and is risking aspirations pneumonia. Therapy will be continued along with tube feedings.
– However, the other therapies went well, so there were enough interesting moments to be thankful for. I was surprised to see him successfully guard himself from a beach ball tossed in his direction. He can move his hand quickly enough and with good aim to bat it away.
– He has become very emotional. I can tell when the “cry face” is starting and it just about breaks my heart to see him affected that way. This is a long, tiring road and the ups and downs are like a roller coaster.
We pray together each day when I leave and that is his most emotional time. The tears flow when I remind him that he heard God say “That’s my boy.” And for now, we are still at Miller Dwan where he has come to know and love the staff members who work with him. They are still looking for a long term facility where he can continue therapy but none has been found. On to week 6…
Last Thursday marked the end of the fourth week in rehab at Miller Dwan, one month of Medicare’s allowed time. My schedule was the same, going up to be with the husband four of the days and at home for the other three. Here’s what happened (in my experience, which is probably much different from the husband’s).
– Shell Lake Health Care Center declined to take Dennis. They felt they didn’t have the needed equipment and the ability to give speech therapy often enough. Back to searching for another facility.
– Gave him a much needed haircut, but there was the part of his head that was hard to move off the headrest of the wheelchair. Tricky and not the best job I’ve ever done.
– He would try to wake up for his therapies but I had a feeling something was “off”. He was looking more like a nursing home patient than a rehab patient. A lot of vacant staring at nothing. Worrisome.
– He kept his ability to sit by himself and correct his leaning. OT and PT did a lot of reaching and grasping exercises. Worked on the steps to roll over in bed.
– My saddest day at the end of this week, I arrived and he told me he was trying to catch up on his sleep and not to talk to him. Granted, he’d had a hard night and he did feel bad about telling me that later.
– Maybe getting over some of his bias against talking to the psychologist assigned to him. Understanding her role better. She’s in a wheelchair too.
– The trach came out on Saturday!! He had no trouble and the hole is healing up with only a bandaid on it.
– Wednesday and Thursday were good days in PT and OT. He’s tossing bean bags in a basket and sitting up by himself for most of the sessions.
– Swallow test on Monday showed he is still not completely safe from aspirating, but he is coughing less during sessions with E-stim. Had his first taste of ice cream on Friday.
– Alert more and engaging others in conversation. Surprised a couple people with phone calls where he did some of the talking.
On Tuesday of week three I got a call from the social services gal assigned to Dennis. She reported that the weekly meeting of all therapists, nurses and doctors had resulted in the decision to move him out, maybe by the end of the week. His progress was too slow to warrant the acute rehab aggressive schedule. He was often too tired or unable to focus for the whole sessions in PT. There were often issues with blood pressure and bowel problems this week as well. I understand what they are dealing with, nevertheless the change from 60 days to “out by the end of the week” was a little alarming.
The next day I went around to our local facilities in Hayward and got his name on their lists. There are three of them and they are all full with long wait lists. But since we could be waiting for years yet, it was still worth it to sign up for something in town.
After social services investigated facilities that would offer the needed therapies within reasonable travel distance, I was given the short list to consider. On Thursday I decided to visit the one rehab/nursing home that had an open bed. It was in Shell Lake, 40 miles from home. True, that would cut my travel time in half on most days but still… it makes me sad to be thinking of this level of care.
The building was acceptable and clean. The staff people who gave me a tour and spent time with me were pleasant and seemed candid about the quality of care given there. I felt it was a possibility, but was a little concerned about their ability to meet the needs of someone who can’t even turn himself in bed.
Back at home I happened on a friend whose mom had been in three different facilities as an Alzheimer’s patient. Shell Lake was the worst of the three. It was back in 2014 and things could have gotten better, but it did cool my already lukewarm enthusiasm a bit more.
I am praying that his progress toward the end of the week will cause the rehab team to reconsider and give him more days at Miller Dwan. It could happen, right?
Today, after a morning of various therapies, Dennis was helped into bed and got a much needed nap. As I watched him sleep, it was clear to me that he has improved. Even his appearance is more calm, less anxious, peaceful.
The biggest change came on Wednesday morning when respiratory therapy came into the room and swapped his trach out for a smaller, less irritating Jackson trach. When plugged, it does not allow air in or out, making the breathing experience about the same as not having a trach at all. It is still there if difficulties arise, but if all goes well for at least 48 hours, it is safe to remove it and let the tracheotomy heal up. There have been no difficulties. Saturday morning the trach is coming out and Dennis is so excited! It was the first thing he told me when I arrived this morning.
His voice has been more clear and easy to understand.
He has not needed suctioning to clear his airway.
He is moving his head and neck more, keeping a more normal position.
The progress on the physical therapy side is slower. He has continued to have low blood pressure when sitting and using the standing machine, making it hard for them to get him strong for those activities. Several times they have cut the session short and returned him to bed to rest. There is progress, but because Miller Dwan is an acute rehab facility, and Dennis’s problems are more chronic, there is once more talk about moving him to a sub acute facility to give more rest time to get stronger. This makes me nervous, but I am grateful for all they have done, their good communication with both the husband and me, and the excellent treatment he has had.
They wanted to have the trach out before they sent him elsewhere, and I have asked if they could also get him past needing the feeding tube. I am hopeful they will keep him another week. Social services will start looking for a facility closer to our home that could take him. I will start preparing our home in case there is no good place available.
In all this, I am not going to waste time and energy being fearful about problems we don’t even know we have yet. I want God to know that I trust him to work things out, when we have the need. I believe he always has a plan for our ultimate good. The only difference from day to day is that sometimes we see how the plan is good, and sometimes we don’t see – yet. His plan does not require me to be “in the know” at every step, and I clearly am not…
Nurse: “I need to take your blood pressure. Can I have this arm?” (the left one that he has trouble moving at all)
Dennis: “Yes, if you give it back when you’re done. I hardly use it anyway.”
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.
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.
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 thought the surprises were over, but they were not.
Today when I arrived at Dennis’s bedside I was able to see his face without the NG tube. The nurses had already taken care of that task. A good thing.
Dennis’s face… he has lost weight in his face and looks so tired. The husband has very big eyes, hound dog eyes, you might say. When he looks at me, or other people, with recognition in those eyes, and maybe a lifting of the eyebrows in question mode, he sparkles with personality. When he has his eyes closed, or half closed as they often are, he looks near death. He doesn’t always show a lot of facial expression – it’s one of the parkinsonism traits of Lewy Body dementia. Another feature of his face is the month old beard and mustache. I’ve held off trying to shave him for fear some hair might be sucked into his trach tube.
The next thing we heard from one of the nurses was that he was being transferred to rehab today! Probably this morning! A day earlier than expected! His first feeding in the new gastrostomy tube was started and a few minutes later PT was knocking on the door to work with him. They were all excited and wanted to see if he could stand with their fancy lift machine.
The doctor came next, then the social worker who had been helping with placement. It was like a celebration with everyone smiling and congratulating us. It was like having a new baby, or maybe winning the lottery.
I actually felt guilty leaving before the move occurred. I had a much needed massage scheduled and had barely enough time to get home for it. I’ve missed a lot of self care lately (showers, hair cuts, sleep, etc…) and decided that there were competent people who would take good care of Dennis during the transfer. And they did. I called this evening and he was in his new room, doing fine, according to the nurse.
Tomorrow I will have a new adventure, finding my way through a new facility, getting used to new regimens and rules. Dennis has always thought that trying to get well was his new post-retirement job but I have a feeling this will be the most work he has done in a long time. The list of scheduled appointments is long.
I know enough not to get haughty and demanding with God. On my walk yesterday evening I had asked only for some small encouragement, something to keep us in the game and give us direction, some small arrow to shoot at the complex discouraging problems in view. I felt a plan was in place, even if I didn’t know the details. I trusted we would be helped, based on the character of my God. And now I will acknowledge his actions on our behalf, because that is what is due.
When I arrived at the hospital on Wednesday morning, Dennis was already back from Interventional Radiology and the feeding tube was in place. It had gone perfectly. However the nasogastric tube was still in place also and would have to stay there, hooked to his nose, for another 24 hours before it could be taken out. We decided to allay our disappointment with a little work.
I fed him ice chips and started his exercises, moving every part of him that would move. He was just finishing this when PT came to the room. The day before I had told the attending doctor that he had been alert all day and had scratched his own nose. He had talked to her and remembered her name. She had been impressed and had asked for him to be re-evaluated. The PT girls had him sit up on the side of the bed, and they too were impressed by his responses. Then Occupational Therapy came and had him brush his own teeth with a sponge stick, and a few other small maneuvers. Another point for the man. Speech Therapy came next and had him do a bunch of swallowing exercises. This was a busy morning for someone who had been nearly comatose for several weeks.
But wow, did it ever pay off! The attending doctor came in the afternoon and said Dennis was going to acute in-patient rehab at Miller Dwan, the best in the area. It’s connected to the hospital via skywalk. He would probably be able to go on Friday. Whereas he had not been a candidate for it previously, they now felt they had something to work with and were going to give him a second chance. I was ecstatic. Dennis was worn out but I think he was catching on that a good thing had happened.
We talked about it (I talked about it) the rest of the afternoon as he practiced swallowing ice chips. So even though he still had the NG tube for another night, it felt like the day had gone gloriously well. He had been a trouper and had worked hard. I had been a good coach and advocate.
I left to stay overnight with a friend who lived a few miles away, feeling oh so grateful and amazed at such a turn of events.
Today Dennis was supposed to have a PEG tube for feeding inserted into his stomach – a procedure done in the radiology department under light anesthesia. It didn’t happen.
I had explained what it was and why it would be better than the nasogastric tube he’s had for weeks now. I played it up because I think having one less tube going down his throat might help him swallow better and eventually be eating and drinking normally. We were looking forward to having it done. By that, I mean Dennis was looking at the clock on the wall in front of his bed and asking every few minutes if it was time yet.
A few minutes before the appointment, a nurse came in and told us he had been rescheduled for the first thing tomorrow morning. They had several emergencies that took precedence. They were sorry. I was sorry.
Preparing for this procedure included having nothing in his stomach, so he had no feedings all day and the night before (via NG tube) and no IV fluid, and no ice chips as he had been having before. He was feeling very dried up. Since his new appointment is early tomorrow morning he won’t be getting anything tonight either.
All I want to say here is that we are getting used to disappointments. All they mean is that we didn’t know what God’s plan was. We now know a little more about the next right thing he’s doing for us. Accepting that does a real correction in my perspective. It makes waiting and trusting way easier.
On the Bright Side
On the bright side, today he was able to lift his right arm and bring his hand all the way to his nose to scratch an itch. He didn’t think of doing it himself, but when I suggested that maybe he could, he tried. I only helped him a little. Later he did it again to show the nurse that he could. He also shifted his upper body a little in bed, readjusting his position, which he has not been able to do prior to this. You may not understand why I am so happy about these small victories, but they are big changes in the right direction. Trust me.
I am praying that everything goes smoothly tomorrow. I hope to be up at the hospital, in his room when they bring him back. It’s been a while since I’ve seen his face without any tubes. I’m ready for that.
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.