Safely Through Night One

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 husband trying out his “new to him” wheelchair, which you can’t really see because he does fill it up perhaps a little too well.

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.


No Place Like Home?

I can’t bear to show you a picture of Dennis. You get a pretty sunrise instead.

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.

My Grandfather’s Clock and Other Songs

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.

Ponchos work quite well at the hospital.

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.

Reviewing the swallow video. The places cameras can go these days…

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…

Brother Bob (black mask), DinoBus (green fuzz) and the husband Dennis

When Things Happen…

…they happen fast.

Mom went with me to the rehab hospital yesterday. We were watching the speech therapist spoon feed applesauce to the husband when the social worker appeared at the door and beckoned me out.

After weeks of searching for a bed for Dennis, something closer to home and less aggressive in therapy, there was an opening at St. Mary’s Hospital in Superior. It was only a few minutes closer to home but it was across the state line in Wisconsin, and that was an advantage for future placement. There was medical oversight, since it was a hospital, and they had the therapies that were needed. It was called a “swing bed” and most hospitals have a room or two of that category for patients transitioning to a different level of care.

I don’t know if I had a choice – it didn’t really feel like it. I had not seen the place nor had I heard anything about it. But, that didn’t last long because several staff members started telling me they had worked there and it would be an excellent move for Dennis. I was uncertain, but it seemed wrong to refuse to have him go. I must have agreed, yeah, I must have. Otherwise how could it have happened that fast?

Two hours later he was on his way over to his new room. Those two hours were pretty unusual though, and Mom and I were so glad we were there to witness them. Every one of Dennis’s therapists, nurses and aides that were on duty that day came by his room and spent time saying goodbye to him. With each one, he would tear up, then they would tear up and all of us watching would start to cry too. Two hours of emotional mess. Exhausting.

They all had stories to recount of Dennis’s jokes, and his cooperative spirit, and his progress. They were a hugging bunch. It couldn’t have been a better send off for a man who often felt like he was failing and being a burden.

I’m going to say, and believe, that it must have been time. God knew we were completely ignorant about the new facility. He knew I would be uncertain. He knew we would trust him and go, and that he could be present with Dennis in that place just as he had been for the last 50 days at Miller Dwan. We pronounced it a happy thing and prayed with Dennis before leaving to have dinner with some friends.

We checked in on him on our way home and after he had been settled in bed for the night. I’m not going to say that everything looked ideal, but it did seem adequate and I felt he would be well attended.

Has he made progress since the last update? Yes, he did some good work the last week at Miller Dwan. He is getting more control of his hands and arms, more fine motor coordination and wider range of movement. He became better at sitting upright and centered. He was able to raise to a standing position with the help of a steadying machine. Yesterday, his last day of therapy, a therapy dog came to the gym for the first time since Covid restrictions. He had such a good time tossing the ball for “Gunner” to retrieve. I just hope he can maintain these advances in the new place, and that will be my prayer.

Krystal, our amazing speech therapist, using the E-stim device to strengthen those swallow muscles.

Progress Report: Week 3 in Rehab

– 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.

His aim could use some work, but they were all close.

– 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.

Chocolate.  The electrodes on his neck are stimulating his swallow muscles.

– Alert more and engaging others in conversation. Surprised a couple people with phone calls where he did some of the talking.

He stood in the stand-up machine for almost 10 minutes before his blood pressure tanked.

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?

Progress Notes: Week 2 in Rehab

All in all, a good week.

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.”