Off to Rehab

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 stand up machine. Took 10 minutes to get in place, 5 seconds to stand up.

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.


When It Doesn’t Happen

I have no hospital picture for today. Instead I took this shot of our meadow while walking, thinking and praying about handling disappointment. Sights like this speak God’s goodness to me.

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.

Hospitalization #1


Dennis has had a lengthy time of stability – a couple of months with no delusional thinking. In fact, he seems to be doing better cognitively, having read a couple of books that really interested him and comprehended them. He does a lot of TV watching, and for a while it was only sermons on TBN because violent shows or even the news was too traumatic for him. Now he’s back to watching the news and some documentaries, and that is almost back to pre Lewy normal for him.

Back on November 1, in the morning, Dennis met me in the hall as I was going over to check on Mom. He said his leg had felt funny during the night when he woke up – not exactly painful, but swollen and harder. I felt it and agreed that it was slightly larger and warmer to touch. It was worth sending a note to the doctor (my Health app gives access) and they messaged back that he should be seen in the clinic. He got in by 11 am and they decided to check for DVT with an ultrasound of his leg. We were walking over to radiology when he got faint, diaphoretic and couldn’t go further. I got him a wheelchair and we made it to the ultrasound. He felt better by then so the tech did the procedure while I watched.

They saw an extensive DVT and sent him to the ER right away. I was impressed with the number of people who practically mobbed him. He was hooked up to all the monitors in no time flat. The ER doc sent him for an CT scan of the lungs and it showed multiple emboli in both lungs. So it wasn’t long before he was put on anticoagulants and admitted to the hospital.

The whole ordeal sent his blood pressure sky high too, so he was put back on medicine for that as well. He stayed for two days and was discharged on Sunday afternoon. All this to say that he has been tired and weaker than usual, even though his cognition has seemed better. He stands and walks like a very old man, his right hand is afflicted with a persistent tremor, and everything he does is slow, slow, and slower.

He had a follow up appointment this week and when getting ready, he was commending himself for showering and dressing himself without help. Is he getting somewhat more independent? Maybe.

From time to time he puzzles over his “words” that he is sure God has given him, and tries to reassure himself that he hasn’t made them up. A couple of days ago he had an “aha!” moment over the word “proteolytic”. It has been harder to figure out than some of the other words and he hasn’t been able to attach it to any certain function, until now. It was brought to his attention after the CT scan that he had some sort of mass showing on his stomach which will need to be addressed after he is done with the anticoagulants. He started thinking maybe there would be a connection to the proteolytic enzymes, and sure enough, he found an article where someone’s stomach cancer had been eradicated with bromelain, an enzyme in pineapple. So God had him working on his stomach, eating pineapple and taking proteolytic enzymes way before he even knew he needed them. He’s expecting the mass to be gone by the time it’s investigated.

He is not exactly at the place where I feel he would be safe alone at home. He doesn’t find things easily, including food and clothes, so it might be awkward if I left for any length of time longer than a few hours. I cancelled my trip to NC for a writing conference and watched it online instead. Maybe if he had to take care of himself, he would rise to the challenge, but I think it would be hard on him. I think it’s going to be a long winter with a lot of staying home for us.