The Husband’s New Job

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.


A New Season, Possibly

For the last two and a half years since diagnosis, changes have been gradual. Most of them have been physical and of a parkinsonian nature. The shuffling, tremor that started in the right hand and now affects both, sometimes a tremor in the legs, incredible slowness of movement, a blank facial expression – all those symptoms have been the most noticed. Even with these things, Dennis has been mostly independent. He moves himself from one place to the other, gets to the bathroom without help, puts himself to bed, gets a snack when he wants one, and makes decisions to go to church or the chiropractor or to visit Mom or my brother.

Cognitively, he is able to think and remember fairly well. He brightens up when talking with friends on the phone and carries on a meaningful conversation, although slowly. Sometimes he snaps into his scientific mind and amazes people. He has become focused on a few subjects, which he follows by listening to YouTube podcasts on his phone. He has a list of prophets that provide daily updates and he often listens to the same one several times.

He doesn’t spend as much time researching his own disease, although he runs across something every now and then. He is more centered on the supernatural, hoping for a better chance with God than he has noticed with medicine. The most recent therapy which he is still receiving is applied kinesiology which includes chiropractic, muscle testing, light therapy, nerve stimulation, cranial-sacral therapy, and tapping, all from the same practitioner who also prays with him.

He was alone at home for one week in April while I took Mom to Florida for a memorial and family visit. He had my brother and Lurae, a neighbor, looking in on him and providing meals. He seemed to be fine with that. My brother remarked that he perhaps did things better than he does when he’s being waited on all the time.

But I think I notice, following that week, a tendency to sleep more during the day, and not as well at night. It looks a lot like depression, and why would it not? There is so little he feels he can do except listen to his phone. That gets tiring so he goes and takes a nap.

Last night he could not tell what the food on his plate was. He was trying to cut it up as if it was chicken, but to his surprise it was salmon. He had a lot of trouble getting food on his fork and reverted to using his fingers to eat the fish and green beans, which is okay with me, but messy. He took a spoonful of cranberry relish and thought he was putting it on his plate but no, he was purposely putting it on a napkin that he thought was his plate. I think the whole mealtime experience devastated him. When I asked if he was having more trouble with his eyes he said yes, and that he thought it was probably his brain rather than his macular degeneration getting worse. He was very resigned and quiet about it.

My question is, are we heading into a period of more noticeable changes that are taking away vital functions? I hope he will still be able to travel to our daughter’s wedding in July. He was so looking forward to that.