Are Birthday Cards Gone?

Anna was looking for ideas about what to get her mom for her birthday in May of 2022. I suggested a box of blank cards to send for any reason. Cheryl has always kept greeting cards that are sent through the mail for fund raising purposes from various religious and chronic illness organizations. Some would be sent to her mom when Elaine was still alive. Some of these are still in residence in Cheryl’s office.

There is a small green box shaped like an old country mailbox near the phone in which these cards used to reside. They are no longer there but are spread here and there amongst other paper and chaff in her office. I had hoped that Anna’s present would take up residence in the mail box topped box but that did not happen.

In mid-April of 2022, I suggested that she should make a list of the May birthdays and we would make a trip to the store to get some cards to send. The idea of making a list is hers. She readily agrees with this idea but as her Parkinson took hold of her cognitive centers she is unable to do this.

A few months back her engineer husband suggested that rather than a list she should write each name on a post-it note and as she selected cards in the store, she could put the post-it note inside and she would know who the card was for. Later when she wrote the card and addressed the envelope she could note what date she wanted to mail it and stick it to the front when she sealed the envelope. That solution met resistance because of the NIH factor. (not invented here) But over time she adapted it to her way and used it for awhile.

In April I helped her make a stack of post-it notes with names and we went to the store for cards. Few of those cards were ever mailed to anyone.

In May I waited to see if there would be a panic mailing of cards. May came and went.

Our daughter-in-law Mavis’s birthday is the 1st of May. Hers was the only May birthday card sent. How do I know? In a previous month there was panic as Cheryl realized she had forgotten where she had put the stamps. I now keep track of the stamps. I often have written about her punding. Sometimes she will pund stuff into obscure places. We all do this – not punding – but set things down in obscure places. With PD it is merely harder to find out where it was parked. The stamps turned back up a week or so later after I had bought a new roll.

Cheryl’s birthday is in May also and her brothers and sisters often gather for a “sibs” dinner to celebrate such an event. These pictures are from that gathering at Gabbey’s cafe.

The birthday cards acknowledgement of the family birthdays seems to have been forgotten. It is probably another nuance to he loss of sense of time, calendar, day, week. Our son Scott’s birthday is the 6th of June. We were at our daughter Anna’s house on his birthday. Anna asked her mom whose birthday was today. Cheryl looked at her with a confused look.

I felt sad about several things. I have been writing significant events on a white board that I put on the table each morning so that Cheryl knows what is happening this day. I have not been writing down birthdays. She forgot Scott’s birthday. Of the few cards that I think she should send we forgot to send one to our son. A few other sad thoughts drifted through my head. But most of all I realized that she had lost the birthday card duty. She had forgotten it. This is a long time thing that she did for our family and her mother while Elaine was alive. This is a longtime activity for her. Her short term memory has been off or fading for sometime. I had gotten used to the fact that it is necessary for me to remind her of events constantly. (It is annoying but over time one gets used to it.)

Christmas, birthday, invitation, funeral cards are all gone. An actual paper card with a USPS stamp is how Cheryl learned to acknowledge things. She never adopted Facebook or any other social media platform for those.

Parkinson is a series of small setbacks. Sometimes it is so gradual it merely seems like life going by. It is easy to attribute all behavior changes to Parkinson, after all, he entered our lives about a dozen years ago and has made dramatic changes to how we now do things. Lot’s of older folks develop an apathy for life. They do not need Parkinson’s disease to help them. It is a kind of disinterest in life. Doctor’s have recently discovered this. Geriatric doctors ask specific questions about it when visited by their patients.

This topic about the birthday cards occurred to me in early May when no panic mailing of birthday cards or frantic searching of the black book or of the old address books that we had in our old house or her mom’s address book. It was a sudden occurrence in her behavior.

Could I be watching apathy creep out from behind the curtain? I will have to be alert to this behavior. So far Cheryl does not seem apathetic. She does have a fading memory. Are they the same?

Carpe Diem.

I Want to go Home

A recurring theme in Cheryl’s head is “when are we going home?” I try at first to answer this by saying that’s good because we are already there. This rarely works. Sometimes it merely makes her angry with me.

The conversation is confusing when we reach this point. I can say to her, okay put on some clothes and we will get some lunch and come home. So, how would you find clothes for you in a place where you did not live? This is the first confusion but she accepts the fact that she has all her clothes here without accepting the truth of “home”. Even I am confused.

Later today, she is dressing now, we will go find some lunch somewhere and come home again.

Physical therapy is on the schedule for later this afternoon. Hopefully she will be tired after this activity.

Carpe Diem.

She wants to Cook

Cheryl wants to cook something and I am afraid that she will harm herself. I cannot get past that.

Yesterday after our doctor appointment in the early afternoon, we stopped at Dewey’s pizza for a late lunch. Somehow the white pizza showed up with red sauce on it but mistakes happen and the pizza was good, just not what we had ordered. (That is the second time in a week that the incorrect pizza showed up at our table. Perhaps we need to expand our cuisine. ) Nevertheless, lunch was good and we returned home to do nothing for a bit. Cheryl lapsed into one of her punding/do something modes and began futzing with making something in the kitchen for dinner at 3 in the afternoon.

It made me nervous and I suppose what I should have done was sit in the kitchen to read my book and keep an eye on things. But I did not. I just popped in to check occasionally and point out that we did not need dinner for awhile as we had had lunch at 2:30 pm.

Family dynamics are hard to break. Before Parkinson she did most of the cooking and I stuck to my baking hobby out of the way at the other end of the kitchen. I stayed out of the way when she was cooking. My opinion was not solicited nor encouraged in our old house. Cheryl was a good cook and in my new duties as cook among other things I have tried to duplicate many of our old favorite recipes. Sometimes I would botch them up but most times they turned out the same. (Thanks, Betty Crocker.) These days when she gets in a mood to cook, things can turn out badly, but, more importantly, she has fallen in the kitchen as often as anywhere else and I worry that she will put her hand on a burner or fall into the hot oven.

When I could not gently steer her away from her “cooking” – she was boiling two eggs – I became angry and upset and tried to explain the danger to someone who sees none.

And last night she slept poorly. I blame me for that. Lot’s of emotion swirling around in her head as she tried to sleep left her fidgety and awake until almost four am. Even the big new bed did not help.

Carpe sad Diem. An opportunity to make a memory was lost to anxiety and anger. But tonight we will make something together. I will do better this time.

She is sleeping late today.

Carpe Diem … again.

Punding

The need to do something, anything even if it is a mindless thing is referred to as punding. Parkinson seems to generate this need in many of its participants. It is generally harmless until it gets in the way of other things. Here is more from the Davis Phinney Foundation website.

Cheryl does this at different times. It used to drive me crazy and sometimes it still does if she starts up immediately before we are going somewhere. She often does it in the car with the purse of many pockets.

Carpe Diem.

So Is It Okay To?

I am currently attending a class for care partners. It is put on for us folks dealing Parkinson’s disease interlaced with dementia and Alzheimer’s disease in our care givee. We have spent a lot of time on taking care of ourselves and making sure we are healthy mentally and emotionally as well as physically. It it easy lose track of those things when you become very involved in the day to day care of another.

Time away from care giving is very important but is it okay to change the social situation a bit and let people in that are in a similar place in their lives?

The idea of a support group meeting allows this to happen but there is a different social dynamic in a casual lunch, friends collected in a bar to solve world problems or gathered for card games with casual conversation. Support groups tend to try being informational rather than random conversation. Support groups that are attended by both the chronically ill patient and their care partner tend to be awkward somehow. If the care partner should feel the need to vent and whine a bit, they will feel embarrassed to do that.

Is it okay to change the social situation a bit and help the Parkinson person participate with you and others.

Admittedly it is a different dynamic. The caregiver has the social burden of not correcting their partner in conversation. Dementia does that to conversation. I want to jump in and save her from embarrassment. What if no one did that? To an outsider it might sound like a game of post office gone bad. So what?

If Frances was elected president then pumpkins would cheaper at the store. That’s true. That’s true and the police are trying to find new shoes for their cars. Those lights on top can fall off and the car hurts from that. Is there any ketchup for the ice cream? Did she bring extra napkins. I see a bug. Where is Scott? Is he coming? I have noticed that more and more people are married to our children. How many kids do you have? I have about fifty. Did you put up the sick people’s sign on the car? I need to make a list so that everyone knows what they are bringing to Thanksgiving dinner next week. I need to call Sr. Janet and remind her that the kids did not give us any raffle tickets.

And on and on. I used to jump in and help her with correct thinking or at least keep her from making embarrassing phone calls. The range of mismatched topics is endless and for some reason our kids turn up in it a lot as children. I also realized at some point I felt embarrassed. Cheryl did not. I stopped thinking seriously about it.

I actually think of this often. When Cheryl is out with her long term friends, people that she has known for many years but has not seen much over the past few, she puts on her “showtime” mantle and converses. When she returns home she is often exhausted from keeping that going. What if the social occasion did not require any sensate being to understand the conversation? What if there was no sense of or in it? Would she be less exhausted?

There are many things to ponder. Carpe Diem.

Big New Bed Delivery and Nighttime Bliss

The big new bed was delivered yesterday. I thought that I had paid for the removal of the old mattress, box springs and the bed frame. Apparently there are tiny variations in the language of such agreements that I did not realize and was not privy to. When did furniture or any purchase like that become so complicated. Even though I asked the salesman – Can you guys remove the old bed? – what he checked off and I did not question was – “Removal mattress and box springs – $99.00.” I forgot to ask about something that I knew nothing about. I should have asked, “And the old bed frame, headboard and footboard too?” He would have responded with, “That’s an extra $50” to which I would have said okay. Once I am making the switch lets go for it. It served us well for fifty or so years. It is merely a bed. It has no particular sentimental value. I remember when we bought the whole bedroom set thinking to myself, that is a lot of money ($1600 in 1979). Beyond any of those thoughts it has served us well. It is time for it to go. It does not fit our Parkinson life.

The mattress and box springs left yesterday. The headboard, footboard and frame assembly went into the garage. There is a lot of useless crap in the garage, like, I suppose, everyone’s garage. On another day I will rid myself of useless crap so there is more space in the garage. I will probably not paint anything in the condo on my own so why am I keeping old paint brushes? I also have an electric hedge trimmer. We live in a condo complex that although it is small we pay to have mowed and landscaped and trimmed. Useless crap it is.

Alas, we were probably the last delivery of the day. The young men were on the way out when I asked lets see how you left it. I asked them to move the bed about a foot closer to the doorway of the bedroom so that it was basically in the same place as the old bed. they did as asked. The delivery included a sheet set and I had purchased a set of mattress covers from Amazon as well as a quilt and shame set and blanket. The install team left me with a queen size mattress protector which I was not expecting but again, had I realized it was coming, I could have checked that the correct thing was delivered. I did not check that fact. The queen size mattress protector still sets on the dining room table awaiting the delivery truck to bring to correct item (which is probably not on anyone’s delivery list for today.) I am waiting to see how this all works out.

I am not perfect either! I ordered the correct size blanket from Amazon but I incorrectly ordered a queen size quilt. Woe is me. Amazon now uses Wholefoods Market for returns. There is one about two miles from me. It was a painless activity. Perhaps I will return to shop there. It is an alternative to Kroger which was there when the building was first put up and then got mired in some developer default controversy about ten years ago. Kroger moved out. The building was eventually completed. I do not know if the crane operator was ever paid. The crane stood idle along the highway for about a year while everyone traded paper and shouted at each other in court. Now it is where I return my oopsios to Amazon and there is a store that sells stuff to store stuff in. America has a lot of stuff. (Sorry I digressed.)

The first night was wonderful. Cheryl did awaken me to help her in the middle of the night but that was after she had gotten up to go to the toilet. I did not feel her get up.

After I got her up at 7 am for her first meds, she fell asleep deeply until I awakened her at 8:45 am. Bliss.

Carpe new bed Diem.

How Many Things Change

It occurred to me this morning as I was reaching for the Cheerios that lots of tiny things have changed in our life together. Not all of them are Parkinson changes. All can seem associated with Parkinson. I will stop using the possessive and leave Parkinson by itself.

Starting with Cheerios, Cheryl rarely ate Cheerios until recently. The why of that thought is unknown. It may or may not be a parkinson. Before Cheerios she was a huge fan of Life cereal. So much so that I was buying Life cereal in the four box collection from Boxed Up online. For several months perhaps a year and a half it was Life cereal, some dried cherries on top and orange juice. Then it suddenly switched to Frosted Mini-Wheat cereal but only for a couple weeks. Sticking with the heart healthy ideas I bought some Cheerios for myself on day as I passed through IGA shopping for the other things on my list. They were quickly adopted by Cheryl as a breakfast option. Cheerios is the current choice virtually every morning now.

A Partial List of Changes:

  • cars
  • house
  • travel
  • motivation
  • dementia and support
  • bicycles
  • relationships
  • Morning routine
  • Sleeping routine
  • Sleeping
  • Memory
  • Intimacy
  • Me and tea
  • showering and hygiene
  • keeping track of meds
  • adjusting meds
  • Exercise
  • Daily chore responsibility
  • Plumbing
  • handholds around the house
  • Emotional response to songs
  • Financial maintenance
  • Falling and fainting
  • Writing
  • and on and on…

As these changes occurred in our life together I did not take notice of them, I merely rolled with it at the time. I admit to being initially annoyed and sad to see something change away from what it was. Old people like to keep things as they are. The past tense is disappointing but the Beatles broke up in 1970. People move on.

Parkinson symptoms are treated with powerful mind altering chemicals. It is the doctor’s call as to what will help. It is the care partner’s call to observe and listen and respect and help with those drugs. The doctor is global and strategic. Day to day caring is tactical, down-to-earth and immediate.

Carpe tactical Diem.

Paul

Cheryl – Paul?

Me – Yes?

Cheryl – When you see my husband Paul if that’s tonight or tomorrow…

Me – I will see him tonight.

Cheryl – Tell him, I love him.

This was one of those conversations in which I am not me. They used to disturb me. Now I just go along.

This was our conversation as I helped her into bed. It was a little early. She complained of being very tired and went to lay down at 8:30 pm. I took her the bedtime dose at 9 pm. She was not asleep yet. I had previously promised her that if she was asleep already I would not wake her up. We would just figure it out later.

Carpe Diem.

Weighing Future Options

Cheryl’s Parkinson’s disease interlaced with dementia has taken a turn to the negative over the past three months. It is tough but necessary for us to explore extra help and other options to our living situation.

I feel a sense of sadness. It is not exactly that I have failed because I recognize in my heart that her disease has a progression. I suppose it is a progression that I had not anticipated.

I also feel a sense of relief, an acceptance of the fact that I cannot do it all alone anymore. I recognize that we have to do something different. That first recognition came when I decided to buy a new bed and change our sleeping arrangements. At least, I thought a split king would keep us from awakening each other at night.

We drifted off to bed about 10 PM after watching a couple of her favorite shows on television and visiting with her sister for a couple hours. We probably eventually fell asleep about 10:30. Overnight I got up to go to the toilet twice and the second time around 3 AM she got up with me and seemed as though she wanted to stay up. I had prepared to sleep on the sofa bed we had and then she came out looking for me. We had our often discussion about church and I suggested we lay down for two more hours and then get up. She got up at quarter til noon.

I got up around 8:30. It was bliss.

I took the time to call the assisted living facility nearby that had housed both of our mothers at the end of their life. I still refuse to believe that we are here yet BUT it does not hurt to find out about various options to move forward from here.

I also set up a couple doctor appointments. She is having problems hearing occasionally. And I wonder about a UTI.

Carpe Diem.

More steps on the journey

Another Lunch with Friends

A good friend of Cheryl’s from church organized another luncheon with her and another mutual friend today.

Back in the bygone days of younger kiddos and the everyday working world, Cheryl was part of the group of women (mostly) who decorated the church for various holy days or other events in the church calendar. Often Cheryl’s job was to clean and press and arrange the alter cloths just so. The group would spend an evening or Saturday decorating the church for the occasion.

These days are gone for her and the decorating committee and St. Ann’s sodality has thinned over the years. Today however Cheryl and Barb are hooking up with Diana, the team leader, who has moved to a retirement community with her husband on the other side of town.

It gave me time to experiment with banana bread and fool around with other things. Maybe even blog a little.

Carpe Diem.