caregiving

Mundane

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It is hard to describe, for me anyway, how uninterested I am in doing the boring everyday tasks to keep our household running. Typically I write about our life and Cheryl’s symptomatic display of different nuances. A day or so ago I was a little down in the morning and I started these notes while I was lining up in my mind what I needed to accomplish for the day. I did not want to do any of it but it was either I do it or it does not happen.

This morning while I was thinking about it some more and helping Cheryl to get dressed, I got a Messenger-message from Cheryl Hughes asking how was I doing? (I sort of poured my heart out to her a week or so back when I was worried about some new behaviors Cheryl was presenting. Today she checked up on me.

I responded, — Not too bad. Cheryl slept mostly overnight. She got up once and told a long story about a play she was in as a child called “My Fair Lady’. I know the play. I had not heard the story about her and a couple of her siblings being in it. I helped her to the toilet and we wobbled back to bed. Sometimes she has funny and vibrant dreams that makes her talk and occasionally she wakes. And sometimes I become part of her dream(ing). I am looking forward to the day that her room is ready at the memory care section of Bridgeway Pointe near me. Between my generous sister and myself I think we have the financial resources figured out. My Roman Catholic church upbringing hovers around in the background and tells me I should feel guilty about that. It has taken me a long time and a lot of blog words to convince myself that it is best for both of us. It will happen in the next couple of weeks. (It’s saddening that the previous occupant is now in heaven.) This week we saw the nurse-practitioner who works with her MDS neurologist. Cheryl’s weight is down to 110#. She has lost 24# since the NP weighed her in March. She sleeps more. Today I crushed her morning meds into applesauce because she told me she does not like the pudding that I have been using. I have been crushing her pills for a couple of weeks now. Today I am fine and you are helping me to gather my thoughts about the mundane day to day tasks associated with living. Why do those seem overwhelming on some days and on other days not?

It seems as though time just drags. And all of these activities: laundry, cleaning, cooking, filing, checking, shopping for supplies and other little day to day things are just there to give me another thing to do while caring for Cheryl.

These are mundane but necessary. These are not my whole existence. It sucks to believe that this is the reason I am here. Let me whine a little. I write this for me.

Filing

I have never been a good filer. Librarians are good at this and finding things back. I am not. Frankly it is a scary task that I ignore for too long and then it is overwhelming. Categories – that has to be decided first and it has to be more specific than “stuff” or “stuff to-be-saved”. Later on more anxiety creeps in as one must decide “how long to keep the stuff?” Why is there no manual?

It is just history anyway. Only the IRS can ding you into giving up your records of stuff.

Many folks have a hobby of scrap booking. I have several note books of scraps of my journaling along through life. Does that count? I have not given them the pitch nor have I organized them in any fashion. They merely sit upon my desk in full view of the monitor.

In a previous life our purchasing department had a wonderful clerk who filed all invoices by date of purchase order and then alphabetically by vendor. Once a quarter she would empty the drawers and scan them electronically into files saved in the same order in a database. It made my life easier as an engineer. I could easily find the PO # and from that I could find the vendor and warranty information. A much better system than my “root through the drawer” technique I have now. Life needs a database.

Checking

I have written about this before and I consider this to be a great accomplishment. Early on I decided that it was unnecessary to maintain Cheryl’s shoe-box method. My files are all electronic. The absolute first thing I did was to find a piece of software to maintain my checkbook separate from the bank’s system so that I could check them and my spending.

Categories rose its ugly head early as I had to decide what I wanted to call various expenses and income streams. (Just in case the IRS decided to ding me.) I got through it. Why am I unable to do the same with a drawer full of paper. Maybe because the system I learned from Mom was put everything into an envelope called “Paid Bills” date it and put it in the drawer? There might also be coupons from J C Penny in there too.

Cooking

I actually like to cook. Generally I like my cooking. I also like to experiment with things. Sometimes the disasters are not edible. When I am cooking for Cheryl and me I do not experiment. She eats less and less these days. I have no desire to have her feel bad about not eating what I have prepared. It is harder and harder to figure out what she might eat at any one time. Breakfast was usually safe. That is no longer true.

Laundry

I do laundry almost every day. It is usually a mixed load of towels, underwear, shirts and pants. Cheryl is a pack rat when It comes to old used Kleenex tissues. She blows her nose and then puts it away in her pocket. I have become pretty adept at discovering where and in which pocket she is hiding the Kleenex. She only has two pair of pajama bottoms that have pockets. I am onto those odd pants and check them first before they hit the basket.

Today a new crisis has arisen. Who would think that a corn muffin would retain its shape through the entire hour and seventeen minutes of the washing machine cycle. I am pretty sure it is no longer edible and some of it did fall apart so now it is all over the inside of the washer. Sticky. It was folded up into the dish towel I used as a place mat the other day. (UPDATE – if you let the washer air out for a couple hours the sticky loses its tactile strength and the muffin parts can be sucked up with a dust buster or other suitable small vacuum.)

Every day is a learning experience.

I outsource the cleaning duties to my niece.

I actually like shopping for supplies either online or in the store. If I have to take Cheryl with me I cannot spend as much time shopping but it is still an enjoyable experience. And she gets out and feels like she is helping. I am disappointed that Boxed Up has gone out of business. Amazon is a big help as is Kroger’s.

Carpe Diem.

Little Incremental Changes

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This morning I am thinking about the little incremental changes this disease of Parkinson caused in Cheryl. The trees in these pictures are maples and they are turning with the season. It is not apparent in the big picture as they show below but zoom in and each individual leaf has a tinge of red around the edge of the leaf. The green still remains in the core of the leaf. Little incremental changes as the leaf begins to shutdown for the season.

Tonight and on days since I started this essay, I am thinking about the little incremental changes this disease of Parkinson that has invaded the person I most want to be with, the person where I am home, has caused in me. Our green area is smaller. And yet at the same time it is still green.

It is my goal to talk to her on a level that is her. Sometimes her behavioral response to some situation can appear childish to me. It has only recently come to me that I must ignore that perception and talk to her as I once did. Almost every morning when I wake her she will ask, “Can we still get to church?” or “What time is church?” I used to respond with, “There is no church today.” Sometime in the past I decided that response was unhelpful. These days when she asks me about church I take that to mean, “What is on the agenda for today?” She has little memory of what we may have discussed doing on the previous evening when we went to bed.

Aphasia appears often. When she is telling a story it is very important to her to get the names dates and places correct, even if she is way off the mark. Her mother is no longer on this Earth nor is her sister Janice. Cheryl tells stories about them or visiting with them in the present tense. Once in awhile I might tell her that her mom is in heaven. She will respond, “Are you sure?” That question reminds me that it is unimportant to correct her perceptions. I have a difficult time resisting the natural male response of – bullshit that is not the way it is.

It appears to me – just observation – that although she can read, the words are mostly meaningless. It the morning over breakfast we look at the newspapers. For me that is the Wall Street Journal. For her that is the Cincinnati Enquirer. I have two observations; She does not recognize that they are two different papers. She is unable to comment on articles that she may be looking at in the paper. (I have asked.) The particular article might be about some city council fiasco. She will tell a story about Sr. Janet and what the newspaper tells Cheryl about her job with the parish office.

I know there is some green still left in the middle.

I am thinking about how it has changed my focus. I used to worry about how late she slept in the morning. The why of that worry always comes back to how much sleep I will get that night. Those two ideas are connected only in my mind. They are not connected in practice.

It changes my perspective. There is a bigger picture. Just like these trees on our property, when one zooms in one sees the differences in the leaves but when one zooms out one sees beauty.

It changes my interest. What can I do to enable her to reminisce even if her memory is weak? Perhaps I can aid her reminiscence. Comment about her stories to get her to tell me more.

It changes my observation of the universe. There is beauty everywhere you look. Cheryl is always telling me about the moon when we are driving somewhere. I look too. She can see the moon in the clouds. So can I if I look carefully and listen to where she says she sees it. A shape in the clouds looks to her like the moon. I long to see through her eyes.

Maybe I could read to her rather than watching her struggle to understand printed words.

Carpe Diem.

At Peace

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One evening this week our three children came over to discuss what is best for their mom. It is a hard discussion. Cheryl was part of it. As we came to understand and accept the few decisions about Cheryl’s future care, I sensed a peace, a calmness descend upon my soul. Cheryl needs more help than I can give her consistently. I do not function well with little sleep.

That meeting took place a couple days ago. It may be my imagination but I sense that Cheryl is slipping away. She slept unwell overnight which in and of itself is not unusual but today she is sleeping the day away.

Carpe the next Diem. This one appears to be lost.

Maybe my night is lost also.

Writing that last line has put me in mind of controlling the things I can and letting go of trying to control the things that I cannot.

Carpe tomorrow.

We Do Not Know

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I started a single line entry in my note book a few days ago with this single line – A thousand thoughts and prayers amount to less than a single action. It was a thought for the day from somewhere. I get a lot of newsletters and other useless email. This was included in one of them.

People say or write it to each other all the time, ” My thoughts and prayers are with you.” For those who are unable to write or say actual words there is the text-message hieroglyphic picture of praying hands which Anglos interpret as prayer but Hindus probably interpret differently. I do it too. Is it cynical to think of it as a shallow and ineffective response to a request for help of some sort? Caring and caregiving are two very different concepts.

The kitchen garbage can is full. VS. Please, John, take the garbage out. Most will think this a bad example but I do not. The first is a description of a condition. The second is a specific request to a specific person.

Most of us are not specific about any need that we may have for help. It is unusual to make a specific request. It is very typical to talk about our own situation or describe some condition that we are in. Few will volunteer to help without a specific request.

Grace and peace be to all of you who help Cheryl and I without a specific request from us. We love you dearly and thank you for your gracious help.

We do not know the other person’s situation. We are not walking in their shoes. We are not taking their path through life. Let us all listen closely and ask, “How can I help?”

Carpe Diem.

They Are Not You

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“… Don’t forget she’s in one piece and they aren’t you.” My daughter said to me in a text message after we had collected Cheryl from the place she stayed for a week while I went to visit my sister in Portland Oregon. (Great trip. Beautiful weather. Decent gin. Excellent wine. We never felt the need or desire to turn on the TV.)

A big part of this was a trial for me (and Cheryl). How would I feel about getting Cheryl into a 24/7 care situation? The place where she stayed in respite is a new memory care place. It is locally owned but not directly associated with any medical institution and not part of a bigger chain or group. How would Cheryl do there? It is a secure facility. Electronic locks on everything including the elevator. They do not let the visitors have a pass to the front exit door. You can be escorted by the nurse or knock loudly and the lobby receptionist will let you out. It is a memory care place. People can wander off at home but not there. That is not Cheryl’s problem.

Cheryl’s problems are numerous: dementia, memory loss, occasional confusion about space and time, Parkinson mobility issues, eating issues, hydration issues, yadda, yadda, yadda. Our life has been taken over by the evil Parkinson.

My thoughts are numerous. How would I feel about settling her in a place away from me? Would she get the same kind of undivided attention that I give her? Would she become angry with aides like she does with me occasionally? Meds and their schedule of delivery is paramount to a parkie. Would I want to micromanage the healthcare aides? Would the aides be pushy and encourage her to eat and drink like I do? Would I feel the need to be there every minute of every day? I have my eye on Bridgeway Pointe which is a place where my mother and her mother stayed toward the end of their lives. Is that the right place for her? Can they provide services for her? How to afford it?

Meditating and thinking about it is tiring.

Carpe Diem.

Free Falling

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The Traveling Wilburys or some other group recorded song many years ago with this title. There are many days when I feel just like this. We are free falling through life with Parkinson.

There are days when I wish I could see the world through her eyes. There are days when I wish I could sense the world through her jumbled senses. There are days when I wish I could understand why it was important to stack the Kleenex just so.

It is exhausting.

This morning as I think about Cheryl’s disease and how it is affecting her and how it has changed our life my emotions about it all are jumbled up in my thoughts.

Love is carrying us through it all but a few more scientific facts would be useful.

Some evenings go smoothly and she is calm when she goes to bed at night. She sleeps. I sleep. Those facts may have little to do with outcomes of the next day. Last night I lowered my expectations of her and suffered along. Eventually about 1 AM sleep happened.

Today we have donuts for breakfast.

Carpe – this – Diem. The next day may not be.

A Prayer for Self Compassion when Care Giving

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I was reading the St. Anthony Messenger today which is something I rarely do. This little prayer at the end of an article about self-compassion struck me as apt. It also reminded me of Mom and something thing she told toward the end of her life. She said, “I think I need a mother.”

What she meant was she was tired and needed to have someone else be in charge. We all need to give ourselves a break.

At the end of her life I took control of Mom’s finances and I did not always do what she wanted me to do. Sometimes I thought her ideas where crazy (not the right word) and told her so and later I would feel guilty about it. I needed her to be the mother.

Sometimes I think about Mom when I am helping Cheryl. In many ways Cheryl is slowly, ever so slowly wasting away like Mom did near the end of her life. Sometimes it makes me angry, sometimes sad. I am always trying for better and more compassion. Some days it is just plain hard.

Maybe I need to give myself a break.

Carpe Diem.

Friday – A Weird One

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It started like a normal morning I got up at 7:30 or so and left Cheryl sleeping soundly in bed. I put the last of yesterday’s coffee in a mug and told the microwave one minute. I woke up the Wordle on my tablet and went out to get the paper. Someone, perhaps our new neighbor brought them inside the front door. I picked up Jeanne’s paper and her mail. She is 98 and does not go out much or downstairs much. I carried her stuff up to the bag she hangs on her door for that purpose. I noted that she had not retrieved yesterday’s paper from her bag. (Maybe I will check on her later.)

I watched the news on hurry up speed up as I had prerecorded it when it came on at 7 AM. There is still a lot of things going on that I have no control over. But at our little group of condos, the decks are fixed, the roofs are on and the trim is newly painted. The landscape folks want me to accept the quote for scraping snow and putting out ice melter. Winter is coming.

I started thinking about Cheryl, winter, gloomy weather, sundown syndrome and care partner stuff. About 9:30 AM I went to see if she was awake and ready for breakfast.

I found her in that in between sleep and wakefulness that we all experience in the morning. Usually my right hip tells me (You are old buddy boy. Move your ass.) to get up and move around. Cheryl and I exchange small talk and teasing for a bit.

“Do you want a kiss on your ear?”, I say.

“No”, she replies.

“What about on this cheek?”

“Okay.”

“Scrambled eggs for breakfast?”

“Sure.”

“Toast with grape jelly?”

“Yes.”

“Want any bacon?”

“Not today.”

“I am going to get your rollie chair. I will be back.”

She is more comfortable these days with me scooting her out of bed and into a transfer chair. We go into the bathroom for a trip to the toilet, pills and then into the kitchen for breakfast.

On this day when I sat her on the toilet she began to shake, sweat and cry a little. “My arms really hurt.”, she said. She initially complained about the toilet seat being cold. I ignored that because she often makes that complaint. Her hands and arms were shaking violently and I held the glass and straw for her to take the meds that I placed in her mouth one by one. We have done this before but not with the shaking action.

I had been gently rubbing her left arm as I helped her take her pills and she asked me to stop. She told me her arms were hurting. I got her a nsaid pain reliever that had been prescribed by her doctor for occasional pain occurrences.

It is a little chilly in Ohio this morning and although our thermostat reads 75 F in the bathroom it seems even to me a little chilly. In the middle of moving her from the toilet to the transfer chair, I got her heavy fluffy ugly pink bathrobe on her. I combed her hair and rolled her to the kitchen.

Apple juice, scrambled eggs and jelly toast later, the shaking and sweating were gone. Her arms did not hurt anymore. She still reports a little pins and needles tingling in her hands and fingers. The meds seem to be working but this whole episode was new. It began after I had gotten her out of bed with no complaint and onto the toilet, also with no complaint.

A cold toilet seat seemed to start everything. And that is very weird. Maybe I need a couple of these snazzy covers.

Carpe Diem.

Longing for a Life

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Some days when I look at family pictures I find myself longing for a different life. I long for a life without Parkinson. Often it is a deep deep longing on those days when Cheryl is struggling and I understand she is struggling and I have no ability to help without making her feel helpless. Her dementia pattern seems to inhibit her from asking for any assistance or realizing that she needs assistance whether it is me holding her up so that she can steady herself or simply handing her a tissue to blow her nose or blot her mouth when the drool comes.

Care partners run out of gas too. On most days her memory seems to work for about 10 minutes. ( That may be a sarcastic quip.) On others the loss of the discussion is much shorter than that. On those days I become frustrated which manifests as a louder whiny voice and sounds like anger. It sounds like anger even to me. Cheryl responds with anger and I suddenly remember where her mind is. It is very easy to forget she is still Cheryl. Repetition helps her know what to do or where to go or what she thinks she needs to do. Nevertheless it can be frustrating.

I started writing this short essay a couple days ago when I was feeling down? lost? tired of it all? – defeated? – maybe all of these. Sometimes I just wonder what if?

I doubt that anyone dealing with a partner in life that has a chronic disease wishes for their current existence. Endurance and strength to get through it all is all I ever hope for.

Looking back on the past few years, the covid shutdown, the covid start-back-up, the lifestyle/work style changes to society, the meanness of social media politics, I realize that Cheryl and I do not have it so bad. I wish her dementia to be gone but it is not – except for the few moments early after she awakens. She will look at me with tired eyes and smile. It lifts my heart and soul when that happens.

I still wonder “what if?” I just do not let it control me.

Breathe in, breathe out, move on. — Jimmy Buffet

GULF SHORES, AL – JULY 11: Musician Jimmy Buffett performs onstage at Jimmy Buffett & Friends: Live from the Gulf Coast, a concert presented by CMT at on the beach on July 11, 2010 in Gulf Shores, Alabama. (Photo by Rick Diamond/Getty Images for CMT)

Picture stolen from NPR.

Carpe Diem.

Time for a Change

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One of my favorite words is Luddite. It is a pejorative. Luddites are resistant to technology and change. Buddhism and Hinduism share the doctrine of Anicca or Anitya, that is “nothing lasts, everything is in constant state of change”. Imagine a Buddhist Luddite. There is a guy with a serious mental health issue.

Difficulties of life while supporting a person with any sort of chronic disease tempers one’s world view. I have come to decide that change in perspective is necessary for a healthy mind, a calm mind, a sane mind.

I have decided to make three changes in my day that I hope will adjust my personal perspective. In the morning spend an hour writing. It is quiet. Use the time wisely. In the morning spend fifteen minutes doing some exercise. In the evening read for an hour. Stephen King has a new book.

I do some of this currently. Generally I read for an hour or so before I go to bed but after I help Cheryl to bed. It is quiet in the late evening. Cheryl usually needs time to settle down. If I go to bed at the same time as her I tend to lie awake listening to her squirm and rub and pat the bed and generally fidget. Often while reading I find myself listening carefully to hear if she is moving. If this happens I realize that whatever reading material I have is not holding my interest and attention. It is time to sleep.

For awhile in the morning during the early summer I had a series of chair yoga (old out of shape people yoga) exercises that I did in the morning. The whole series took about 15 – 20 minutes. Somewhere in June I lost interest and quit but exercise is boring and doing exercise because someone told you it is good for you is uninspiring. I do not simply believe ideas that others expound. I look for some validity elsewhere first. Perhaps I need to mix it up and find my groove. I am still working on that aspect of it.

Write in the morning during the early hours while Cheryl is still sleeping. Make it a routine and perhaps I can finish my book. My it a routine and perhaps I can inspire myself. I have started three different book ideas. I have to select one and push it.

A fourth thing not mentioned above is go back to working with students in the program I am involved with at a local community college. It is a fact that communication with others without dementia can be a relief from the miscommunication that occurs in our every day life. Four hours is about long enough for me relax and not think about Cheryl. It is a break. I think I need that.

It is later in the year. The sun goes down earlier in the day. Cheryl’s brain wanders off into some odd places when it is winter gloomy outside. Our condominium is one the first floor of a two story building. We are in the back and the windows face east with a view of an overgrown woods. It can be a bleak landscape view in the winter. In the summer it fills in close enough that there is no view of the sunrise. Garages line the front so that there is no view to the front and the typically magnificent sunsets we can view from our hilltop. But it is a one floor plan which is perfect for Cheryl and her bad knees. it is, however, dark in the winter and on a cloudy summer day much like viewing the world through cataracts.

And there you have it, my first morning of writing and thinking.

Carpe Diem.