dementia

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.

Paul

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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

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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

FIND RESPITE

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FIND RESPITE – If you’re focusing most – if not all – of your time, energy, and resources on caring for a loved one with dementia, you may find you cannot sustain doing so over the long-term. With proper self-care, you can relax and recharge, manage caregiver stress, and become a better and more effective caregiver. Consider sitting on the porch and reading a book, a brisk walk, a cup of Starbucks, an ice cream cone, a massage, a warm bath with soothing scents. These things need to be done regularly in order to maintain your own health.

I read these words again this morning. Only I can find respite for myself. That is often hard for the care person to see clearly. I went outside to straighten the small garden area we have. The steady rain over the past few days which has darkened Cheryl’s mood also has loosened to soil around a Jacob’s hook holding a hanging plant Cheryl got for mother’s day.

Five minutes but peaceful and rewarding.

Carpe Diem.

History of Overnight

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It occurs to me this morning after another overnight of strange behavior that discussing her actions overnight has no useful purpose. So, I have not this morning. I will wait and see if I need to discuss it with someone else.

Part of Carpe Diem is to stay in the present. The past is the past and while it gives me a hint as to what is coming, it is a very dim view with poor illumination.

Carpe Diem.

NO

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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.

The Caregiver Helpbook (3rd Edition)

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Subtitled: Powerful Tools for Caregivers

So what can the Care Partner of The Year 2021 do with all of this wonderful knowledge? In an inadvertent fluke of fate and its fickle finger Patty send me an email with the information about a Caregiver’s Class put on by Catholic Charities of Southwestern Ohio. I am all for being as educated as I can about how to take care of Cheryl better by taking care of myself.

Being an engineer and amateur scientist I thirst for knowledge. That is corny but true. The problem with that statement overall is that there is no complete solution to Parkinson’s with dementia added. There is not even a partial solution. Cheryl’s sister hopes for a cure. I do not hold that same hope. That being said, the situation is not hopeless. 

I bought a book called “Dementia Reimagined”. I was hoping for a cookbook style answer manual. It was not that at all. It is an incredibly tiring tome about public policy and where it fell into the dumper over the years. Engineers are always hoping for a cookbook for their situation. When this happens, do this. Alas there is no such manual for life situations as defeating as PD with dementia.

But back to the help-book, It seems as though many of the ideas I have discovered on my own or others have told me about I merely have been ignoring them. Early in the book it talks about developing goals and achieving them. These are not care-giving goals. These are goals that allow the care-giver some relief.

Initial focus is on setting a goal or several goals and development of a plan to achieve it or them. The goals discussed are relaxing activities for the care giver. So, it is something you want to do. It is also something that is reachable and realistic. Something you can accomplish in the near term.

  • What do you want to do?
  • How much of it do you want to do? (more specifics)
  • When do you want to do it? (timing helps to plan)
  • How often do you want to do it? (repetitive relaxing activity)

This same technique can be used to plan any sort of activity, of course, but the book’s focus is care partnering and care partner health. Additionally this portion of the text asks the maker of promises and planning to predict the probability of achieving your activity. There’s an implied deep need here. Something that you may really feel like you want to do but have little chance of achieving. A life lesson in the manner of understanding that not all wants are achievable. (How driven are you to get to your goals)

The next portion of the focuses effective communication and recognizing emotional and stressful situations. Two forms of communication discussed are assertive and aikido. A comparison of these styles of communication is Assertive:”stand tall” vs. Aikido:”standing with” This portion of the book takes me back to my educational psychology classes and discussions about defusing confrontational situations.

  • ASSERTIVE
  • setting limits
  • asking for help
  • advocating for another
  • making difficult decisions
  • dealing with difficult styles of communication
  • AIKIDO
  • defuse emotional situations
  • help others feel understood
  • reduce anger
  • balance emotions to allow dealing with others

As I go through the rest of the book I will report anything else of interest to me.

Carpe Diem