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.

And Last Night was Bliss (Again)

Posted by AdjunctWizard

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.

Donepezil aka Aricept

Posted by AdjunctWizard

A mild mannered drug used to treat confusion in patients with dementia. Often the only chemical of consequence for treatment of Alzheimer’s disease. A little humor there. The previous choice was rivastigmine which Cheryl could not tolerate.

We’ll see. I am fearful of giving her some thing else that is going to make her feel like crap all day long. The slow movement and mental confusion is somewhat easier to help her with than persistent nausea. Rivastigmine did that to her.

We are starting this drug on the thirteenth of the month. That cannot be good.

Carp drug Diem.

Big New Bed Delivery and Nighttime Bliss

Posted by AdjunctWizard

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.

Shower Mats?

Posted by AdjunctWizard

Cheryl fell in the shower this morning. Slid down the wall is probably a better description. I heard no thumps. It is always our discussion – I’m going to take a shower. Okay, I will listen for thumps. Thanks. And then she goes to the big bathroom to get cleaned up. Today I thought I heard her futzing with her walker but she was occasionally bumping the shower door as she tried to reach the hold bars to pull herself back up.

I ordered a shower mat from Amazon. I told her from now on we put the bench in there with it. A few weeks ago I had the plumber put in the really fine hand held shower head in preparation for this day. Several times I have suggested that she use the bench. Resistance to infirmity is great. No bench she insisted up until now. I will insist but I want her to maintain as much independence as she is able.

The shower floor does not seem slippery to me but I could be wrong.

One foot in front of the other. One step at a time.

Carpe Diem.

Lists, Wishes and Trips

Posted by AdjunctWizard

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

Posted by AdjunctWizard

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.

Paul

Posted by AdjunctWizard

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

Posted by AdjunctWizard

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.

NO

Posted by AdjunctWizard

In a past episode of “Ghosts” the young woman protagonist uses the term “maybe” instead of a direct “no.” Cheryl says, “I’ll think about it.” Reading the care giver’s guide to the galaxy book which is a part of the class I am attending to learn some things the communications chapter discusses saying “no.” It talks about the implications of negativity which go along with saying no. I have noticed that most times people cannot say no with out offering some explanation to lessen the blow of the no.

It is much harder with a dementia patient. The no may be a greater blow than one can imagine. But sometimes it is very important to the care partner to express “NO” and then explain the the care receiver why no is important this time and then discuss alternatives that may sound like “we’ll see.”

We will see and keep working on it.

Carpe Diem.