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

Progress Report: Week 5

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…

He looks at this lovely poster made for him at our family reunion. All the staff like it too and some have started calling him Uncle Bus.

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.”