stroke

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…

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…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

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– 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?

Week One in Rehab

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Occupational Therapy, clothes on, in a chair, ready for work. Thumbs up.

Progress Points: Week One in Rehab

New routines are getting in place at Miller Dwan Rehab Hospital.. OT early in the morning to get dressed, brush teeth, ADLs. Speech therapy. Off to the gym for an hour with PT and then back to rest. OT and Speech again in the afternoon. Evening rest.

Off oxygen and still doing well.

Blood pressure remaining stable.

No more finger pricks for blood sugar testing.

On a new mattress that avoids painful pressure points.

Allowed to sleep at night, undisturbed if he doesn’t need anything.

Beard got trimmed (yay!). Wearing real clothes during day.

Having real conversations with wife. Voice getting stronger.

Getting “known” by staff.

Got to ride stationary bike in PT, with help.

Room got personalized – the “love” poster from family and all the cards are on the wall where they can be seen.

Sayings

When told rehabbing was his new job: “Take this job and shove it.”

The Husband’s New Job

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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.

Off to Rehab

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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.