New Day, New Month, New Life

/ Shirleyjdietz / 3 Comments
A new day, the sun rises over Par Place

It’s the first day of December, and in honor of the new month I want to move forward and record our next adventure. The last four months since the husband’s stroke, have been full of hospitals, rehab, and nursing home for him. For me, it’s been hours in the car traveling to keep an eye on his condition, his progress, his caregivers. I’ve spent very little time at home and didn’t feel like doing much when I was there.

So, that’s all changing tomorrow. I can’t believe tomorrow is nearly here, at last. We will be packing up and leaving the nursing home at 2 pm to travel the half hour to our home at Par Place. Some of our transfers took two hours from start to finish but for some reason this one has taken ten days. I have been pushing and being the “squeaky wheel” the whole time – ever since I became convinced that Dennis would be better off, and happier, at home. There have been obstacles in our path, and one after the other, they have melted away.

The new life, well, I debated whether to call it new or more specifically, different. The different life for me will be staying at home and being a full-time caregiver. Hopefully it will give Dennis some consistency and more attention.

However, there is the question of whether or not we can actually do this as well as we would like. I’ve put a lot of thought and effort into getting equipment, supplies, formula for his tube feedings, and helpers. Most weekdays I will have help for two hours in the morning and two hours in the evening. I have friends who will come and give me breaks for exercise, and appointments around town. B

ut he is quite helpless, weak, and often disoriented. All his meds and nourishment have to go through the stomach tube (PEG tube). He is bowel and bladder incontinent. He will have to be moved with a Hoyer lift from his bed to his recliner or wheelchair. He sleeps most of the time. Fortunately, he is still himself on those occasions when he wakes up and talks. He knows me and his friends. He remembers that he is coming home on Friday.

So, because this may be the last thing he and I do together, I want to remember how it went, what we said to each other, and how it felt to know that life might very well be coming to a close. We have talked some about these things, but only recently has he at last confessed that he couldn’t think well enough to be in charge of his own health care. “I trust my wife”, he told the Hospice nurse.

Although we had the conversation, and an evaluation, we won’t be getting help from Hospice. They won’t accept him as long as he has a feeding tube, sorry but those are the rules. I was upset for about five minutes and then remembered that God had been asked to lead and direct, and he is faithful. I was then relieved that Dennis wouldn’t have to be affected by their rules. One less decision that I would have to make.

Every day in December, to write and remember, that is my goal. So, more tomorrow. I’m sure it will be an exciting day…

No Place Like Home?

/ Shirleyjdietz / 3 Comments
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.

November in a Nursing Home

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Freezing rain, snow showers, car covered with dirt and salt spray, gray skies, darkness before we are ready for it. It’s definitely November in Wisconsin. My daily trips to Spooner seem short by comparison but they still are challenged with this weather.

I am learning how different a nursing home is from a rehab hospital – something I knew in my head but experience emphasizes it. Some days I am dismayed with the care the husband is given. Some days I feel much better about it. Several days I have had to wake him up and get his care started without help. The weekend was actually frightening with the staff being stretched thin and several incidents happening. I wasn’t sure Dennis was getting his meds or his feedings on time or at all.

Today I arrived late in the morning and all was peaceful and calm, the room was straightened and my husband was dressed and sleeping in his recliner. But let me tell you about yesterday…

Somewhere between his speech therapy session, which I was told went well, and his PT session something happened to Dennis. He was much different, being unable to participate in his PT transfers, unable to keep himself upright, and not being responsive to questions and general talk. He stiffened and was hard to move and slept for hours without his usual requests for position change or the urinal. I wondered if he was having a second stroke. After a couple hours without improvement, it was decided to pack him up and go to the hospital ER for evaluation. The ambulance came and got him.

I will mention here that he didn’t want to go and had to be talked into it. He saw nothing wrong with the way he was feeling. I knew something wasn’t right but didn’t know what. I’m the one who has to think about him needing emergency care. Emergency care in the nursing home amounts to an LPN doing chest compressions while waiting for a phone request for a doctor to show up – no monitoring, medications or personnel familiar with running a code. I pretty much scared him into going by telling him to get evaluated or risk dying in his bed.

At the ER we got so much information over the next five hours. He had a urinary tract infection but the good news was that he didn’t have Covid, didn’t have pneumonia, didn’t have a second stroke or heart problems. He got a dose of antibiotic in his feeding tube and another ride back to Maple Ridge in the ambulance.

I went home and was settling down to sleep when the nursing home called to say Dennis was on the way back to the ER because his feeding tube had come out. I had heard a popping sound while watching the ER nurse give the antibiotic but I assumed she was familiar with the ports on his feeding tube. I asked her if one of them was the inflation port for the balloon that kept the tube in place in the stomach. She said yes, but didn’t seem concerned. The balloon had broken but the tube didn’t slip out until back at the nursing home when they moved him about.

Dennis got a new tube put in and two more rides in the ambulance. What a night. And, as I said, he is pretty hard to wake up again today, but with reason.

I find it hard to sit and watch him sleep. He is unable to wake up long enough to focus on anything or communicate more than a word at a time. I hope that as the urinary tract infection clears up, he will revive, be himself again and resume therapy.

Our setback matches perfectly with the gray, wet, coldness outside. It’s November.

He has a window. The view is not very impressive.

On the Move Again

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Dennis is missing lots of beautiful sunsets, but the sun is setting on one more of his stroke recovery experiences.

It’s been 23 days in “swing bed” status at St. Mary’s in Superior. The husband has become accustomed to the people, the environment, the routine. So, naturally, it is time to change things up again.

Thursday, November 3: Care conference with the case manager, therapists, in Dennis’s room and with me on the phone was concerning. The physical and occupational therapists have noticed that he has trouble remembering steps and sequences for moving. He doesn’t seem to be able to build to a greater skill level because of that. He heard this report and later when I questioned him he agreed with their assessment.

The goal with these physical therapies has been to make transfers possible without mechanical help and multiple people. Dennis has muscular strength but he doesn’t know how to direct it when it comes to complicated (yes, complicated!) movements like standing up, or sliding over. He has reached a plateau. They feel he should transfer to another long term facility. His only remark was that it should be as close to home as possible. However there are no beds available in Hayward.

Friday, November 4: By the time I reached the hospital parking lot my plan for the day got scrapped. I got a call that there was a bed available in a town 30 miles from home. I had not visited this facility but decided to say yes to it, pending approval after I had seen it. Dennis and I discussed the move. He’s already dreading leaving this batch of new friends…

It is so confusing to navigate the rules of Medicare. If it were not for the social workers and case managers that we have encountered I would not know what to expect. They are very good at keeping track of how many days are left at different levels of care, and how to keep Dennis getting some more time with the therapies he needs most.

One of the most improved areas lately has been his work on swallowing. He has steadily increased the time on the E-Stim device and the number of swallows he takes. I am glad that the speech therapist made sure he got one more evaluation with the fiber optic camera and it did show improvement. He was given the choice of having some soft foods like pudding if he was okay with the slight risk involved. But there is still more work to be done before he can consider having the feeding tube removed.

Tuesday, November 8: I visited the new facility in Spooner yesterday after my time in Superior with Dennis. It was neither greatly good or greatly bad. It’s hard to be specific about what makes some places clearly “nursing homes” and other places “hospitals”. Sometimes it’s the fact that many nursing homes are in older buildings, abandoned for their original purpose or dated in some other way.

Maple Ridge Care Center is a former hospital with several wings off a central nurses’ station. There are parts of the building that are completely unused. One section has been made into a daycare for the employees children. The outside of the building and the grounds are neglected, sidewalks and curbs cracked and crumbling, the foyer sports a rumpled rug at the entry and leaves and debris have blown in from outside. Doors in the hall are open showing offices with varying degrees of mess and disorganization.

The better aspects of the facility were the people working there. Many of them were young and appeared competent. The patients were mostly sitting around in wheelchairs watching birds in the small aviary or playing bingo in the dining room. Therapists were wheeling people back and forth after their sessions. It looked busy and fairly happy.

The room where Dennis is most likely to end up was large and empty. Some painting or repair had taken place and it hadn’t been refurbished yet. I could see it being a nice room, although it was in the long term wing instead of short term rehab. I’m not sure if there is a message in that, probably not. I hope they are getting it ready today since he is scheduled to leave Superior at 9 a.m. tomorrow.

I will try to be there to meet him when he arrives – they have open visitor hours 24/7. They also have some Covid patients that they keep in quarantine. They evidently aren’t having too hard a time with the virus. One other concern about Maple Ridge is that I’ve noticed it’s hard to get anyone to return a phone call. I will have to train Dennis to pick up his own phone when he gets there.

For anyone wishing to send a card or letter to welcome Dennis to his new place, the address: Maple Ridge Care Center, 510 First Street, Spooner WI 54801

510 First

My Grandfather’s Clock and Other Songs

/ Shirleyjdietz / 2 Comments

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…

/ Shirleyjdietz / 2 Comments

…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 5

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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 Report: Week 4 in Rehab

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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.

Reach Dennis, reach!

Progress Report: Week 3 in Rehab

/ Shirleyjdietz / 4 Comments

– 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

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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…

Sayings:

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.”