Love and Life

Support Group

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Last night at support group which is a joint support group, by that I mean some care partners, some Parkinson patients, the conversation was centered on care partners and the difficulty of that activity.

We often start by introductions. We had two new people, Teresa and her husband, Dale who has PD. Dale was recently (a couple years) diagnosed and they as a couple have been dealing with symptoms and life altering changes. Recently they downsized and moved closer in to the city and source of their medical care. They happily discovered Parkinson Community Fitness (PCF) was just a few blocks from their downsized house. Teresa has had psychological therapy to help her deal with her husband’s disease. When she revealed this fact she exchanged info with Jackie who had been pondering the same thing.

It is wonderful to see people helping each other through a difficult time. Life is a journey. Sometimes it is helpful to ask for directions. It is why this group exists. Cheryl originally started it. John and I took it over as her dementia worsened and she could no longer keep up with its organization.

Five questions — all open ended.

These questions are stolen from the Davis Phinney foundation and its theme of every victory counts.

What’s the best way to approach difficult coversations with my person with Parkinson’s or care partner? Take a deep breath and get rid of your anger. Remember your partner is not doing or not doing something to annoy you on purpose. Parkinson’s disease interlaced with dementia is complicated.

I don’t want to nag, so how do I encourage my person with Parkinson’s without harping or nagging? This of course is a source of friction in any marriage that can be made worse as one partner cares for another with a chronic disease. Most care partners were okay with nagging if it proved useful. I know I am. it is the guilt that shows up later that bothers me most.

How can I tell if I’m expecting too much/too little from my person with Parkinson’s? Care partners often maintain expectations of their previous life before PD entered their partner’s life. We can see the slow movement issues. We do not always understand that mental processes slow also. Decision making can be challenging. Menus in restaurants can be extremely challenging.

How can a Parkinson’s care partner live well today? Find time to do things that you as a care partner want to do. Find and do things that are yours and yours only that you can do away from PD and caring for your partner.

How can a Parkinson’s care partner be loving and supportive but also honest about how they are feeling? Most couples are open with each other. It is hard to stay married for long without talking.

Melanie spoke about feelings of grief as she and her husband began to recognize how life changing this disease can be. For Cheryl and I, we have noticed that it can be a very real sense of loss. It is hard to be upbeat when life beats you down. It is for us a one day at a time thing.

Hence my theme “Carpe Diem” which I say to myself over and over lately merely reminds me to look for the good things now. Take advantage of when she is feeling good. Forget about lamenting what could have been. develop a network of helpers to be with Cheryl occasionally so that I can be with myself.

I have not added Edie Kynard’s prayer ( modified) for a while but looking over my notes from last night and writing this piece this morning caused me to find it back.

Carpe Diem.

Who am I?

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Last night was a peaceful night. Cheryl laid down in the big new bed at 10:30 or so. I finished up a couple things and joined her at a quarter ’til 11. It was a restful night. I awakened to go to the toilet at 6:30 am and so did she. Cheryl laid down again but I got up.

At about eight I went to check on her. She was awake laying in bed. The creaky door had startled her. I apologized for wakening her from her dreamy state. As I closed the door to return to the living room this conversation ensued;

Cheryl – Who am I?

Me – You are Cheryl.

Cheryl – And who are you?

Me – I am Paul. We’ve been married for about 50 years.

Cheryl – Well, happy anniversary!

I do not know what to make of this conversation. As I left the room she added, I love you.

I can understand that in the early morning hours she is a little more confused than normal. She is still tired. I do not know how well she slept. I can report that the couple of times I got up overnight she was in the same position. She moves little when she sleeps during the night. At about 5 am she was having a conversation with someone in her sleep but she often has these conversations. I do not always hear them.

We will see what the day brings. So far, my youngest son has invited us to dinner on Father’s Day which is Sunday.

Carpe Diem.

Punding

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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?

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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.

And Last Night was Bliss (Again)

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The ups and downs of this Parkinson thing do not seem to allow for planning, comfort and looking-forward-to-ishness. I imagine it is the biggest headache we care partners have to deal with day to day.

In addition to the fact that Cheryl can be great one moment and in the next she can be off in the weeds punding or hunting around for something that does not exist or merely worrying about something that is days into the future, she sleeps fine several days in a row and then one night is up. If one does not have Parkinson one can still have sleepless nights occasionally. Parkinson merely makes it more annoying. But, holy cow, it can be really annoying and not only for the Parkinson person.

The previous night was miserable. She did not sleep until about 3 am. Last night she laid down at 11 pm and did not move from that position until 7 am when the LOUD AND ANNOYING alarm clock went off to signal TIME FOR MEDICINE. That is what it displays in two inch high bright green letters after it raises its brightness level so that it is visible on the moon.

I got her the meds. She took them and laid back down for a bit to allow them to work. I put the Kleenex box in front of the message to the lunar astronauts. I felt rested.

I went to turn on the “news” and was shocked to learn that there were sexual hi-jinks going on within the Southern Baptist Convention. Hoping for more news about the Pirates of the Caribbean star Johnny Depp and getting instead the fact that Hunter Biden was, as a husband, a stinker as told in a new tell-all memoir by his ex-wife, I turned it off to do the Wordle. Ho hum.

She got up a little later and put the big new bed back together.

We are up at the regular time with no extra laundry today.

Life is good.

Carpe Diem.

Last Night was Peaceful

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Last night was the first dose of donepezil which may help with Cheryl’s confusion and dementia issues. It has two main side benefits (effects) in addition to the myriad of others that seem related to any drug regimen. The side effect I am most concerned with is insomnia. I will be watching for this closely over the next few nights as her body adapts to the medication. The drug literature suggests a two week or so adaptation period. I am hopeful today.

The dose in this series of pills is 5 mg. The intent is to discover the patient’s tolerance for it. The dose will be increased over time. If one eats a little bit of peanut butter each day when one is little, one will not develop an allergic reaction to peanuts. If you eat a little bit of dirt each day as a child you will develop a tolerance for a lot of things later in life but your parents will go through a really annoying diaper period.

Nevertheless last night was peaceful. One trip to the waterproof room and no extra laundry in the morning. Seven AM meds consumed on schedule. Breakfast of yogurt and Pillsbury refrigerator rolls rounded out the morning.

Exiting “news” today from the world’s largest advertising company Meta formerly know as Facebook, new tools are available for Instagram whatever that may be. (I am old.) All the major stock market indexes plunged (not fell) into bear market territory. The Fed is wondering out loud about where to set interest rates. Nervous investors are placing their bets. Bitcoin aficionados are moving their money so quickly the major exchange called a halt. (Think of all those computers mining bitcoin settling into stasis.) Ho hum. And it is going to be hot today on the east coast where all the news comes from. Stay hydrated!

Another day begins. Cheryl seems to be moving well. She can try out our new grab bar that was installed yesterday on the wall near the shower to help with getting in and out of the shower. I have no control over the things that CBS has decided is news today, so, although I am mildly interested, I do not spend much time on it. Cheryl is quietly watching the news after eating her Pillsbury refrigerator rolls and yogurt with OJ.

The Wordle today was easy. I got it on the first guess. Today life is good.

Carpe Diem.

Big New Bed Delivery and Nighttime Bliss

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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

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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.

Lists, Wishes and Trips

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Today sitting in Anna’s house chatting, Anna told her mom that today was June the fifth. Did Mom know whose birthday was today. I thought, shit, I forgot to write that detail on the white eraser page that I put on the kitchen table in the morning. And I had lost that fact also. I have been so focused on Cheryl and getting some activity for her each day I lost track of my own son’s birthday.

Cheryl always wants to make a list so she does not forget something. How does one even begin to write a list of things or events not to be forgotten when one cannot remember what is to be on the list?

That is a tricky question. It is hard to remember what you have forgotten or maybe did not know at all.

Another subject for a list is the places and people we need to visit . Maybe we have not seen them in person for awhile. there are many people that we have not seen in person for at least two years. I did travel to see my sister about a year ago. We attended my nephew’s wedding in California. It was hot. It was fun. My brother-in-law, my nephew’s father, had brought along his fiance to the celebration and for some arbitrary reason she blew up and their wedding is not happening. Cheryl is working on a list for visiting folks. My nephew and his new wife are expecting a baby very soon.

Should she ever get her list together I will make every effort to figure it out. Planning trips is hard. Cheryl needs a lot of extra equipment these days. The new U-Step walker, although it folds, is better transported by a pick up truck. She is much more steady behind it.

Carpe Diem.

Past Few Days

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The past few days have been sleepless and disturbing. Cheryl has one of her meds that she has been taking for a long time seems to be bothering her at night and not allowing her to sleep. As we sleep in the same bed on the same mattress I do not get much rest either.

Two nights ago I gave into the thought that it was her Sinemet CR tabs that were both helpful overnight and disturbing her sleep. I discussed it with her and she wanted to try taking only one tab for overnight. She slept until about one o’clock and got up to go to the toilet. She came back to bed and slept until the seven o’clock alarm for morning meds.

Wow! Could it be that easy?

Last night we did the same thing. She did not get up at all. I had a little extra laundry to do in the morning but I did it with a full night of rest.

Now it is the weekend which should be a time to relax and rest but we have little to do on the weekend calendar. I lean on my kids. Cheryl has been talking about the kids all week. If I can I take her to visit.

My first thought is my son David. He has a wonderful backyard to sit and visit. My plan was to visit on Sunday but as we drove to our favorite place for a walk Cheryl said she would like to visit David. I had told her as we were driving along about visiting David tomorrow afternoon. Somehow that translated into today in the afternoon. I called David and he said sure.

We took our walk and sat on David’s back patio the rest of the afternoon.

Maybe tomorrow afternoon we can find Max’s ballgame and visit Anna’s family.

Carpe Diem.