Caregiver Stress

What are My Goals?

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My sister said that maybe I should reevaluate my goals for Cheryl. I interpreted that as not specifically goals but what am willing and wanting to do for her care. Considering myself and my health in that same equation.

Hmm, lots to think about there. Recently I bought a new transfer chair to help me maneuver Cheryl around various places that I felt were too far for her to walk. My original thought was graduation and parties. We had some of those coming up.

It was a convenient method of transport so much so that I opted to take it to Florida on our little trip and not Cheryl’s super-walker from U-Step. In retrospect it was both a mistake and a smart move. I did take her “in house” walking frame. She had support at night and in our rental condo. A beach wheelchair was free for the asking we merely had to make a phone call to the life guards.

I pushed her across the street to get ice cream a couple times. that would have been a car trip if I had not had the transfer chair. — Convenient. Getting her into and out of the ladies handicap bathroom/stall — INConvenient. Live and learn mom used to say. We will keep using the transfer chair. It is how I get her out of bed to the toilet to the kitchen. It works great for that. I have not had any back issues. She does partially support herself.

I have started to think — actually I have for some time — I need to get my act together before I start helping her get her act together. In that instance I am not in a hurry for me and I can be calmer (I am still not good at that part.) at least while I am helping her. I have learned to anticipate her moves.

When we were at the neurologist earlier this week he asked if we would like to talk with a doctor associated with their practice that specializes in palliative care. We will see how this all plays out. Are we near the junction with another road?

Carpe Diem

Doctors Week is Tiring

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This week for lack of a better description was doctors’ week. We saw both our personal care physician and Cheryl’s neurologist a movement disorders specialist. He made some minor adjustments in her meds schedule and added one new one to help with anxiety and perhaps some depression he detected by interviewing Cheryl.

Prior to these visits over the past couple days Cheryl slept poorly. This morning she is sleeping in. She was relieved last night when I helped to bed with the fact that we had nowhere to go today. We had no doctor visits. She did not have to be on her toes to answer questions about how she feels that could make her feel sad. I think she is very aware that she can cry easily and is unable to control that response. Her neurologist is very gentle and recognizes her disease’s progression in her body.

It was very hard to maintain her showtime persona yesterday and the day before. I am gladdened by the fact that it is over for a few months.

I helped her up out of bed and into the kitchen for breakfast but I was premature. She kept her eyes closed in the kitchen. She seemed uninterested in breakfast after all. I asked her if she wanted to sit in the lounge chair and doze for a bit. She did.

I talked to the physical therapy folk to schedule the PT recommended by her neurologist. Eventually she awakened as I put a pillow under her left side because she was drooping that way in the lounger.

I rolled her back to breakfast. She ate and looked at the paper. She did not work the puzzles.

I talked to my Portland sister. She often makes me rethink things. The doctor has diagnosed Cheryl with some mild anxiety and perhaps depression. The brain floats in a sea of proteins and chemicals. Parkinson messes with that. I do not always recognize my own needs as a care partner.

The next phase begins.

Carpe Diem.

A Little Surpising and Harrowing

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Parkinson is full of surpises.

Many maybe all of these surprises are attached in some form to the various meds used to stave off the effects of the disease. Many of these surpises are not Parkinson at all.

Cheryl falls over upon occasion and those occasions seem to be increasing in frequency. She always falls backwards. Always is a strong adverb simply by being superlative. Every time I have witnessed her fall it has been backwards. When she gets up from a chair and I encourage her to lean forward to put her upper body weight over her toes (nose over toes) she will only do that for the first short motion of standing her next thought is to lean backwards while pushing on the chair. She is afraid to commit to the motion of standing. There is nothing I can do to help. I will ask her if I can help. her usual answer is “No I think I can do it.”

No-I-think-I-can-do-it often causes conflict. Two things tug against each other my unwillingness to allow her to suffer in silence is pitted against her unwillingness to recognize she needs help in some situations or her unwillingness to give in to the handicapping disease. That is one third of her physical surprises – balance issues.

The other two thirds are urinary and digestive issues. Urinary issues are mainly overnight incontinance and a constant fear of daytime incontinance. This last is exacerbated by the inability to easily stand from a chair and her unwillingness to ask for help when her bladder reports to her brain that it needs to be emptied immediately.

Digestive issues are both physical – constipation and indigestion and mental – as in making menu choices or answering “What would like for dinner, dear?”

Parkinson is a complicated disease and that is complicated by the many this-will-cure-you charlatans out there providing help to the parkies who need it and would desparately like to be cured. Many charlatans are not on-purpose charlatans (I am willing to give them the benefit of the doubt), they merely have strong beliefs in something that has worked for them. Parkinson is not hopeless by any sense but it is degenerative. It is complicated. It requires more than a PhD from the university of Google to solve.

Hopeful

Carpe Diem

Today is Odd

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But I am glad it is over with.

Cheryl woke up super early for her these days. She was awake a little after seven this morning. I have to admit that I was a little disappointed because she had been awakening at 9 am or so. I began to treasure those first couple of hours from about 6:30 am until 8:30 am or so. Those are mine to do whatever I want to. Do the Wordle, chair yoga for old people, Quordle, blog a bit or think about life and drink some coffee. It is my time. I would check her and listen for her gentle snoring from the living area while I read or watched the early morning news shows. It was my time so when she was awake when I came by her side of the bed, I was disappointed and also elated that she was awake.

Early after she had a bowl of cereal for breakfast she had a short bout of diarrhea. Not a serious issue and as she typically is constipated as are others with Parkinson in many ways it was a welcome change. Not the loose bowels but the relief coming with movement. It made me want to figure out what she had eaten the day before to occasionally fit that into her diet.

The whole episode which I handled badly, got both of us upset. There seems to be no gentle way to clean her backside while she is struggling with balance issues. She kept complaining I was hurting her while I intended to be thorough all the time I was thinking about UTI’s, so, I complained right back to her about holding still. I apologized profusely afterwards.

After this episode in the front bathroom she went to the big bathroom to get further cleaned up. I suggested that she take a shower to top off my handiwork. I should have kept my mouth shut. She might have showered if I had not mentioned it. But I did not keep my mouth shut. Alas.

I left her to do her thing unaided. She actually was moving pretty good and seemed fairly stable. I checked on her about an hour later and she was dressed.

When I came into the bedroom though she reported that there was a bird flying around the condo. She had been chasing around the room. I told her that whatever she did it must have worked because I did not see the bird anymore. (I may not have told her that in a calming voice. I get nervous and upset when she is seeing things.)

The rest of the day was filled with wandering demented conversation about nothing. Occasionally she spoke about her childhood memories. She wanted to talk to her Aunt Jean and at one point carried on a conversation out loud with her deceased sister Janice’s picture. She said she wanted to talk to her mom and I suggested that we visit the cemetery.

We left to visit the cemetery. During the ride to the graveyard a discussion of George Ward and where he is buried ensued. George is a friend that I went to college with 50 years ago and he passed away maybe 15 or 20 years ago. He married a friend of Cheryl’s who we still have lunch with every few weeks. There is no telling where that thought originated in her head. It just pops up as do many odd and off-the-wall thoughts.

Back home before we went out to eat, I asked her a question about food and she told me two people were talking (in her head) so she could not hear what I said to her.

As I backed away from the garage and lowered the door she told me that the little girls in the garage were upset to be left there in the dark. I lied and told her the light would stay on after the door was down. The girls would be safe there while we ate at the restaurant.

How do I feel?

Exhausted. Carpe Diem.

Make a List

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Cheryl makes many lists. Early on when she was still working and Parkinson was not a friend, she made TODO lists for work, school activities and whatever was coming. These days with Sam’s disease (Samuel Parkinson) such a big part of our lives making a list is more nuanced. The next day one must remember what the list is about.

In May two of the grandchildren marked significant events in their education. One matriculated from university and will begin contriting to the business world after this family vacation. And one graduated from high school and has her sights set on university in the fall. Cheryl made a list to mark both events. We were only able to attend one of the graduations but both celebrations. The list worked but I had to remind her what her notes meant.

Vacation view

In another part of the family, preparation is happening for a family reunion style gathering with no funeral attached. Cheryl wants to be very involved although her organizational skills are mostly gone. Her head however is jumbled with ideas.

“I need to make a list!”, says she.

“Try to relax and enjoy the beach.”, he replied.

“I will after I make a list.”

Sam this disease of yours is so much more than we had hoped for in our lives. (sarcasm)

CARPE DIEM (dammit)

Day Two

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Cheryl slept pretty good last night. One of my many anxieties about this vacation trip is how well she will sleep at night. In retrospect it is a constant concern. Like everyone she is much better health and attitude wise with a good night’s rest. Parkinson merely makes that harder to achieve with regularity. Stopped overnight in Cullman Alabama she seemed to sleep okay. We snuggled for a bit until she was asleep or seemed so to me. I moved quietly to the other bed afterward.

Buckee Hat

This morning I was up at 6 AM but we are on CDT now. Cheryl awakened at 7 AM. I helped her toilet and get cleaned up and change clothes. I thanked the Almighty for the smooth start to the day. We rolled down to the breakfast area to se what we could find. I found scrambled eggs, toast and bacon for Cheryl. Her favorite these days and as she started to eat and proceeded to have a coughing fit, I cursed the Almighty for interfering with Cheryl’s need for sustenance. That was a joke of sorts but lately when she eats breakfast she suffers through a coughing fit until the phlegm drool gets down her throat and her esophagus gets its act together and she can swallow okay again. She eventually settled down and drank a little green tea.

Day two of the trip is off and running. Google says that if we do not stop we will be on the beach at 2PM. And in the shameless advertising of places to stop, LaQuinta in Cullman has executive suites- their term- that are pretty nice if you are traveling with a less than ideal mobility person.

Carpe Diem.

Beach hat

It is Strange

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Yesterday I looked at my notebook and realized I had written little in my journal for several days. I pondered the fact that things seem to smooth out for a bit. Usually it is a long enough bit that one can be lulled into the idea that things are changing. Things are changing for the better.

And then,

Stuff that lost your attention falls in the dumpster.

Last night after Cheryl’s previous night of reasonably good sleep stayed awake all night.

Today will be a long one. She will be tired all day. So will I.

Carpe Diem, dammit!

Inspiration, Thoughts and Ideas

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As we progress down the sad road of Parkinson and intermingled dementia I am always looking for ways to help Cheryl or get help for her and me. This web blog by Cheryl Hughes is and has been a source and an inspiration to me.

For the past few days as Cheryl has struggled through various mental clouds I have begun to ask about and look for trusted home health services. She is coming off of a UTI which I am getting pretty good at recognizing just by behavior. Some sort of mild sleep disturbing cough (thankfully not Covid related) has messed with sleep cycles for her and me. All of that is easing as the antibiotics have been used up. We are slowly drifting into our weekly sameness.

The past week of April has been beautiful in Ohio. On Tuesday I road my Rad City bike out of our drive onto the public roads. This is something that I have spent the winter gathering the courage to do. I rode around late morning to early afternoon on residential streets near me so that I did not have to deal with rush hour frantic antics. I greatly enjoyed my ride and although it was not long I realized that I was relaxed when I returned. My cousin-in-law was sitting in the kitchen with Cheryl having lunch and I was pleasantly fatigued.

It is time for me to get some consistent considerate help. It will cost money but there is that story about camels and needles that reminds me of my real responsibilities. Financially rich is not a good description of us but I am acutely aware that Cheryl’s care will cost more as time goes on. I may be too concerned about that but it is something I think about often.

Cheryl Hughes has pointed me to DailyCaring.com which is now sending me email newsletters. This website may prove invaluable as I try to learn more about helping Cheryl. Other friends have pointed me to a home care group that I will contact in the coming week to get established.

Carpe Diem

Making it Through

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About 6 or 7 o’clock in the evening is prime anxiety time for me. I start to carefully assess Cheryl and look for things for us to do together to use up the evening. I spend too much time obsessing about what might come. I could wait and see instead of obsess and fret.

Last evening after Cheryl’s rough day I started to think this way again. As I wrote the paragraph above I thought to myself – you know what? – que sera sera, dude! Foohhget about it! Let’s just see where this all goes.

Later we went to bed like normal. I read for awhile. She was still awake when I came to bed. I helped her roll over. Ultimately she fell asleep.

Huh?

We got through it.

Perhaps it is time for me to let God do his thing.

Carpe Diem.

Just let go of it

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Time to let it go?

In a discussion last evening about bread knives with my daughter, I admired the bread knife that I bought her for some occasion in the past after discovering that she did not have a large knife for slicing the bread I had made for it. The knife that I have and use at home is a knife that has been around since my childhood. I do not really know the detailed story but Mom and Dad had this knife in their kitchens through life and they used it to slice breads and cakes.

As a child I always thought of it as “The Knife”. It is not the knife I used as a child of six years or so to slice open the back of my left index finger. The Knife was made by Federal Cutlery Co. N. Y. That is stamped into the side of the blade. The handle however looks to be my father’s handiwork. He made a couple pieces of wrought iron furniture when he was in Hughes high school. It would not surprise me if he had repaired this knife at Hughes and kept it for my Mom. Or found it somewhere in New York when they lived there shortly after the war. I was a toddler then. I do not know the story. I should have asked when Dad was still alive.

It does not cut as well it once did. Perhaps it never really cut that well but because Dad had repaired the handle and injected his love into it, it had never been let go. That is where my discussion with Anna went as I was admiring her knife and how smoothly it sliced the Irish Soda bread I had made. Perhaps it was time to let “The Knife” go?

Maybe if Dad was still alive he would tell me he did not really like how the handle do-over turned out but Mom really liked it. Dad was always trying to find the right gift for Mom. This was especially true on her birthday and Christmas. I went shopping with him a couple times. Looking back, he had a mechanical man’s sense of what would be the perfect gift but he loved her dearly.

The Knife will still be in the knife drawer but underneath the new bread knife I ordered identical to the one Anna has. The Knife and I have history together.

There are other things such as these that I have let go or am working on letting go. Some are physical, some are attitudes, some are worries.

Carpe Diem