Parkinson’s

How do you know?

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How do you know when it is time for an extra care facility? Maybe it is time when she brushes her teeth with Noxema and is not repulsed by the taste?

Maybe it is time when a magazine arrives in the mail and she immediately takes it apart to sort and re-sort the pages into a file.

Maybe it is time if she suddenly at 12 AM becomes interested in calling her long dead grandmother to find out where she lived when she was a little girl and is inconsolable until she can find the phone number.

Maybe it is time if you recognize in yourself that much of your patience with God’s plan is no longer available.

Maybe it is time when she is no longer eating enough to sustain life and you begin to think that perhaps others may be more knowledgeable than you at finding a solution to nutrition.

Maybe it is time if you simply want to help her more than you are capable of doing.

Maybe it is all or none of these ideas. Maybe there are other thoughts that have crept into your mind as you realize how deep your love is and how shallow your skill set is.

Living apart will probably be as hard as living together for the first time when we joined ourselves in matrimony fifty-three years ago.

It makes me sad and anxious.

Carpe Diem

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.

Early Morning

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It is not really very early but Cheryl is still sleeping. I have given her her first meds of the day and she lays back down for a bit to let them work on her. I crush her meds and stir them into vanilla pudding, some of that stuff parents put in their kids lunch. This is a new thing and for the past couple mornings it seems to be working.

My trip out west to visit my sister has planted a bug in my mind about tracking down cousins that I have not chatted with since childhood. I do not know where that came from but maybe it has to do with thoughts about family and as families spread connections are lost. Maybe the fact that a couple of my same last name cousins came to visit with Joyce and me in Oregon. Maybe I just do not know.

Nevertheless, I reached out to a couple cousins who are not the same last name. I will see where this goes.

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.

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.

It’s Near Time for Good-byes

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I started this a couple days ago while sitting in the airport and elsewhere. I mulled over many thoughts that I had about family and siblings and care giving and end of life. A great visit with my sister and only sibling alive comes to a close.

Joyce asked me if I was shifting back into caregiver mode. I am. I also think that I never left that mode or mood. I was far away but the kids were close by for Cheryl. David took it upon himself to visit his mother every day. I was able to relax a bit.

In the collection of photos below in the picture immediately above the lighthouse there is a little white speck to the left of center in an otherwise empty ocean. That is a whale spout.

When I return we ( our family) will be planning, thinking carefully about future care for Cheryl. This was a test for us all. There are lots of imponderables. What is best for Cheryl? How will we finance it? How will we respond to her needs?

Carpe Diem.

I Wish I Could See Through Her Eyes

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Cheryl sees many shapes and things and people that I cannot. I wish I could see through her eyes just once in awhile. I might have a greater understanding and appreciation of what she is going through.

Yesterday as I left sitting at the table with another gentleman waiting for dinner, I suddenly realized that in many ways she is gone. It saddened me deeply and I cried a bit. She is staying at a memory care facility while I go to visit my sister across the country.

I am hoping for a great visit. We have not been together for two years.

Sleeping last night was very hard as I expected it to be. I thought about Cheryl and hoped she would not be too disoriented or afraid. She is more of both lately. Several times over the last couple of months she made reference to being gone. The first time I sat with her and listened. She was convinced she would not be available to have her hair cut in August. She is still here physically but her words are a mystery often. It is frustrating to her that she cannot find the names of her family and friends. It is frustrating to me that I cannot guess the correct words and help.

I hope she knows who I am when I get back. I wonder who will I be when I get back. But if not I will need to figure out a greater amount of care for her. A meditation for another day.

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.