Kindness

When She Says Thanks

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When she says thank you, I respond with you are welcome.

When she tells me, I’m sorry, I respond with you do not have to be sorry.

We have these conversations all day long. I started this blog post after reading and responding to the Facebook post shown here. I suppose I have not thought of this before but politeness and kindness are very basic to the whole care giving, care partnering thing.

For many months earlier when she was dealing her dementia and before we monkeyed with her meds and bought a new bed so we can sleep better, there was a lot of tension between us at night and this sort of conversation did not happen.

This disease is a displeasing feeling in one’s posterior. Injecting calm and kindness makes the day go easier. (And the night.)

Tonight she is following three different cookie recipes to make something that she is going to use tomorrow. So far I see butter and eggs in the bowl with some sugar. Earlier I was thinking of forcing my help on her. In mid-force I decided what the hell. I can throw away the butter and two eggs tomorrow. Pretty cheap solution to calmness in the household.

Carpe Diem

Parkinson Hacks

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When did the term hack get substituted for coping strategy? This is an unimportant question that jumped into my head watching the morning newsy show. The gentleman was talking about traveling and airfare and airline scheduling nuances to guarantee getting there on time and not have any trouble. He shared his ideas for traveling early on Thanksgiving day and traveling home Friday. Getting back in time to watch football for the rest of the weekend. He could have FaceTimed his family that he did not want to visit for long. It could have saved a lot of time and money. (That is a hack.)

Wouldn’t it be great to make a list of hacks for Parkinson and his damned disease? He found it. Why did he not write a manual? Even written in the flowery English of the 1800’s it may be of use today. Nevertheless if he published other than his observances to the medical community (The Shaking Palsy – An Essay), I missed it. Parkinson describes a shaking motion. Today his name is associated with a wide range of symptoms, behaviors both movement and cognitive.

In our support group meeting on of the topics posed was “Share one piece of information, a coping strategy (hack), a motivational thought you wish someone had shared with you when Parkinson disease first made an appearance.” I have several and it has taken me a long time to learn them.

Cognitive

Often but not always a person dealing with Parkinson will have cognitive issues in addition to movement issues. These can come in many forms; hallucinations, sensing others, detecting others presence, odd beliefs with little knowledge, delusions, lack of time sense, lack of calendar sense (day), short term memory loss, aphasia, to describe a few. When you detect this happening in the person whom you are helping – Don’t argue. It is very easy to fall into the trap of trying to correct things. Remember with memory loss everyday is a new day.

For me this is an ongoing learning experience. I do use argument (not quite the right term – dissension? – justification?) as a method of attaining her focus because when she is mad at me she is completely focused on what I am saying to her. Often that is when I am attempting to prevent a fall or a near fall. She wants to continue doing something that is to my mind unsatisfactory, bordering on dangerous with her worsening movement control.

I do not do this often because the side effect of having her angry with me can last until bedtime. Sleep I have found is refreshing to her in a way unlike nothing else.

Meds

As a care partner it is extremely important to control meds, medication timing and to observe any issues or effects of the meds. Is this new behavior due to her worsening Parkinson or due to the new med or aging in the old med? It involves lots of reading and observation.

Whenever a change is ordered or a new med is added, the care partner must become observer and research assistant.

Checking activities

Check, check, check on things. A task that might take ten minutes for a non-Parkinson could easily take three times as long. Allow for that when planning activities no matter how small or how large. Parkinson time is different that regular clock time. Many diversions can creep in. In fact scope creep has to be tamped down continuously. (A trip to the toilet can easily morph into putting on a whole new outfit.)

Providing Help

Interfere and help. She may not want your help. Help anyway. Apologize later for helping. Do not help before it becomes apparent that she is truly and hopelessly stuck. Mentally she might think that there is hope yet and she does not need your help. It is also possible that she will not remember you helped. Just help.

Social

Generate social activities for yourself and your partner. Go out to lunch. Go out to dinner. Visit friends and family. Take walks in the park. As much as your are able look for or create on your own opportunities to be outside and exercise. Seek out exercise venues that cater to people with movement issues. (Physical therapy is one to one. There is very little social interaction.) Specialized exercise classes are far more social.

Socializing in general stretches the brain and often requires dual activity such as eating and talking. Walking and talking in a park is an excellent form of this socialization and has a third benefit of giving the body a chance to make vitamin D. Multitasking is hard for the Parkinson brain.

Caring

You have to create a network of care. You may think you can do it alone. You cannot.

Attitude

Don’t give up. Choose to be happy. And seize the moment.

Don’t be shy – lower your expectations of people

Ask for direct help. Rarely do people when asked for help say no. Usually they say that they cannot right now. Follow up and ask when they can. This can be difficult.

Carpe Diem.

Dementia and Daily life

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No matter how slight in the daylight hours her dementia which is characterized by memory loss, confusion, inability to understand implied ideas (The garbage is getting full vs. Take out the garbage.), following instructions (recipes), calendar time even when displayed (Monday, October 10, 2022 at the top of the newspaper) and random association of objects (old birthday cards paper clipped to new magazines), it seems to affect every minute of every waking moment of her life. I struggle to keep her informed about what is happening or going to happen soon. It is stressful to remember my stuff and her stuff too.

Today’s topic which started at 4:20 AM this morning was a problem with the computer. Which computer I do not know but I assume it is the on in her office. It was stuck working on some background process and that was clogging up the workflow. If I had to guess it was some Norton Defender thing going on tying up resources. She has a Windows 7 operating system and takes very little to befuddle the processor. None of this happened by the way. It was all a dream that popped her out of bed at 4:20 AM. It popped me out of bed too.

After a little discussion and a trip to the toilet, I got her back to bed and I made a pseudo-check on the computer and reported to her that it would be okay in the morning. It was running a background cleanup process. She should get some more sleep and wait.

When these episodes happen in the middle of the night, I worry about her vivid dreams. She called it a nightmare probably because in her dream she had to get something done quickly. The computer was not cooperating. Lately she has had several discussions about work projects for the church and as memories about her working career. Navigating the discussion is tricky when I point out that she no longer works beyond our little condo. What few little officey jobs she did for the parish evaporated with the do over of the parish hierarchy when the Catholic Church in our area discovered they had too many buildings and not enough people.

A lot of old files and booklets still exist in her office. Lately I have been closing the door to her office at night and reporting to her that it will keep the kiddos out of her area overnight. She usually says, “Good. Thanks.”

I did not speak about the computer although I did point out that she was sleeping pretty soundly when I woke her at 9 AM and she remarked that yes she did not get up at all overnight. (She truly was dreaming when I talked to her at 4:20 AM.) I affirmed her comment and helped her get up. I did not mention 4:20 AM. (Am I harping on 4:20 AM? Yep.)

After she ate her cereal and as I was passing through the coffee pot one more time, she remarked that she hoped the computer was okay. I did not expound on that but suggested she should check later when she had a chance. She did and reported all was well.

Carpe 4:20 AM Diem. (I could not resist.)

Hallucinations, Delusional behavior, The presence of others = Caregiver frustrations

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Today I spent an hour or so on the phone talking to my sister, Joyce. She called about 11 o’clock as I was finishing a loaf of bread dough. We talked for a long time as we usually do when she calls me or I call her. We talked about various things and caught up with each other’s activities.

Cheryl could overhear our conversation as I had put the phone on “trucker” (speakerphone) as I finished up my dough activity but eventually I turned off the speakerphone feature because it does not work well with her outside walking and me inside talking loudly.

Eventually we finished our conversation. Cheryl moved by me into her office to do her card thing. I could tell by her body language she was angry about something. I checked in on her. She was sitting in her office so I asked if she wanted the light on. She replied no. I remarked that she seemed angry. She said she was because her cards were all a mess.

Her delusional mind did not have a memory of her sitting at her desk last evening sorting and moving her cards around.

I did not have an answer suitable for her to be okay with so I kept my mouth shut.

Sometimes in the moment seizing nothing is a good idea to maintain namaste.

Carpe Diem.

Surrounded by Wonderful Loving People

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“Feeling blessed” – is a phrase I associate little with this disease of Parkinson but I am learning to understand the meaning of that phrase with respect to helping others and help from others. Cheryl used to tell her mother that there is grace in accepting help from others. (:-0) Once in a while I say this to Cheryl when she resists my aid.

It is easy to get caught up in “why me?” It is easy to not take note of all the kind and loving ways that people around you are willing to help in some small way. Most do not even hesitate. Wear your gray hair to the door of a restaurant and the guy coming the other way will hold it for you. Carry a walking aid or a cane to the same door and kids will jump up and open the door.

In our life with Parkinson we experience these small helps a lot. Cheryl wants to do for and help others even when they are helping her. There is goodness in everyone. Even when one is certain that the other person has not applied themselves and therefore did not achieve the expected benefit help is given without expectation of gratitude.

From the point of view of “little helps” everywhere often spontaneously offered to us, we are blessed.

Our friend Jane is a great help to me. She has organized a network of care around Cheryl and me. She has contacted many of the group of women that she and Cheryl used to play bridge with. Cheryl is unable to play bridge any longer. The game is simply too mentally taxing for her. We used to play Scrabble in the evening and I did not want to play because Cheryl would always, often anyway, kill me score-wise. With Scrabble and Bridge and other competitive thinking sorts of games, she excelled. Her math and logical brain rose to the challenge.

Jane and the rest have organized themselves into Wednesday visiting parties. Jane comes across the hall on Monday so that I can ride my bike or do whatever. Barb comes on the last Thursday of the month to take Cheryl to lunch. Cindy has been coming over on Thursday in the afternoon so I can go do whatever. I usually ride my bike in the warmer months. Linda has been coming on Wednesday but her sister is very ill and she needs to be with her. (She may not be with us much longer.) Jane is a blessing to us. As is Linda and Cindy and everyone of Cheryl’s friends.

Family …

My son and daughter-in-law have been a focus of my need to get Cheryl out away from our little condo on the weekend. David and Melissa are almost always available for a weekend visit. They live nearby in eastern Indiana. The drive to their place is such that I takes us through the fringe of the city into enough rural properties that here and there are planted corn and soybeans. It seems like a long trip to Cheryl. When we get home her reaction is much like coming home from a long trip.

A few evenings ago I invited a couple of Cheryl’s cousins for dinner. It was a great time. Steve and his wife Marisa sent an email just checking in on us a few weeks ago so I invited them for dinner. Cheryl insisted that I invite Lois who is another cousin from a different direction. 🙂 Lois, Steve and Risa did not know each other except through inference by family name(s). Lois and Steve are cousins to Cheryl but not to each other. Nevertheless the dinner was great. They found common reference by neighborhood. They physically do not live far apart.

Cheryl talks about Lois a lot and her mom Aunt Jean (great aunt). In her childhood she got a lot of hand me down clothes from that direction. Lois is a couple of years older. I may have mixed up the story a little. I am merely trying to track down some of these childhood stories before the people in them are gone. Marian and Tom, Steve’s mom and dad, are gone from this world. Their family is younger. I remember Steve as a boy coming to some of the long ago family gatherings at Sharon Woods Park. Lois is the last, I think, of her family. Her sister Maureen we used to see occasionally at Macy’s in Kenwood doing her supervisor shtick. She is gone.

As we move on and Cheryl resides mentally in her childhood, I have taken it upon myself to reconnect with these people. Many of whom I do not know personally except by my wife’s stories. And her memory is failing her in bits and pieces and fits and starts. I think it is becoming more urgent for me to do this and I do not know why I feel the need to do this other than it brings her great pleasure to talk and reminisce with her cousins. Her most pleasurable stories seem to revolve around the many large family gatherings and smaller group visits.

On my never ending journey to help Cheryl experience the best of her days even though Parkinson is trying to steal the memory of them from her.

Carpe Diem.

One More Thing

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There is always one more thing to do, one more chore to accomplish, just one more job. The unpaid but highly rewarding job of care partner is filled with unrelenting detail and a never ending series of little jobs. The list is long. New things are added often.

Take some time to reflect. Cheryl’s creeping dementia does not allow her learn new things or compensating techniques easily. And she may not learn them at all. She might learn the reverse. Always be encouraging even as you as care partner become discouraged.

Carpe Diem

Enjoy the rest of it.

Whatever it may be.

Help where you can. Sometimes she will refuse the help. Help anyway.

Double Carpe Diem.

Reminders

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Today I have taken notice of the necessity to remind Cheryl what she is doing and where she is going. On this particular morning I have reminded her that she was going to change clothes for exercise class three times so far. Once she is away from other distractions I relax a bit and wait for the next reminder time.

Today’s list of events

Starting sometime in May after I was into my care partnering seminar I started to post the days events on this handy piece of white plastic left over from some project. I read an article that gave some tips for helping those who are struggling with dementia. It spoke of using a small erasable white board to post events somewhere. There is one on the wall of every hospital room I have been in for twenty or more years.

I had this and it works for me. I even had dry erase and wet erase markers leftover from my teaching days. They were not dried up yet, so, I was set for awhile. Since May I have had to order more markers. This one is near the end of its useful life.

The family calendar became less and less meaningful overtime. Cheryl is no longer able to discern what week or day is applicable to today. I started transferring the days events onto this board the night before I went to bed. She reads it the next day and looks through the newspaper. Even though the date is printed at the top of the newspaper she cannot relate it to the date for today.

Dementia, confusion and memory loss is annoying to be sure but the silver lining is every day is new and fresh.

Carpe Diem.

Dressing the Bed

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When I make the bed in the morning, lots thoughts run through my mind.  I imagine that everyone does this or at least everyone who makes the bed consistently. I recognize that not everyone dresses the bed in the morning before work or other chores. These days it is often a necessity.

I once remarked to my sister-in-law as we traveled to our pizza Tuesday destination or some other dinner destination and she asked Cheryl, “Is this a good day?” that it is a good day. There is no extra laundry. As this disease moves on occasionally there is extra laundry.  That there is none does not equate to a good day so it was just a stupid comment. Uncalled for as I looked back on it this morning while getting the extra laundry in the mixed load started.

Laundry is one of those chores I never did before this disease. It crept into my life four or five years ago. Now I am defensive about my methods and organization of it.

But what started me down this meditative road this morning was not laundry, it was the thought of a good day.

A week or so ago on the family chat text session, Ken remarked that he could get pizza delivered to his slip where he docked his pontoon boat at the lake he lives near. I texted him late in the evening to ask if he was up for pizza Tuesday and early in the morning he said he was. Her face lit up when I told her that Ken was coming for pizza Tuesday.

A few days ago I asked her brothers and sisters to spend more time with Cheryl or simply call on the phone to chat. It is something she really enjoys. It is also something that is difficult for her to do on her own with her current diminished cognitive ability. Tonight her brother is coming to share pizza.

She probably will not remember he is coming until she sees him.

And Ken being Ken was already there when we got to the restaurant from the occupational therapy session this afternoon. Her face lit up again. He slipped into the back of the booth we selected across from Cheryl. They talked about family. Cheryl occasionally struggled to find a word or a name. Ken waited. They talked more about old times that had occurred in this very restaurant when it had a different name.

It was a great visit. Cheryl thanked me for the great evening. I thank Ken for his patience and gracious support and understanding of his sister’s struggles.

It was a good day.

Carpe Diem.

Last Evening Discussion

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Last night or maybe the day before Cheryl asked me whether we would have to get another booster shot. Covid-19 has drifted into the background since the death of E ii R and other news. I replied that no doubt someone was working on a new shot to address the specific variation of the virus in the same manner that a new flu shot is developed every year. We will ask Lauren when we see her in December.

The WSJ has this to say today about Covid -19.

Her commentary and question about the current covid vaccine challenge was mixed in with other comments about the many old Christmas, birthday and other holiday greeting cards that she has rediscovered and placed in a small basket crafted by my dad’s deceased sister Alberta. I still marvel at Aunt Bert’s skill. Cheryl marvels at all the cards that in her mind just appeared in the mail. Most are years old but they just came today.

Sometimes she replies to the messages contained inside each card on the card itself. Later when she reads her own reply, perhaps days later, it is new information.

Dementia is at least memory loss and everything is new and fresh. I have not been given that gift. Everyday is a new day even if it is Groundhog Day.

Carpe Diem.

More Things I have Learned

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After a sleepless night and an early rising at 5:30 am I begin to doubt my great idea of buying a new bed so we could sleep better. The last couple of nights have been a build up to last night’s insomnia.

After that experience I notice a couple of things. We are both on edge. She is upset that I am angry that she could not sleep and wants to offer an explanation. I am only-one-cup-of-coffee cranky and unwilling to accept any explanation made up out of whole cloth. As the day continues we will ease up and move on as we recognize that we both are very tired.

Most nights the big new bed has made a huge difference in our sleep. Lately I have been letting her sleep in a bit because it seemed to me that she was very tired in the morning. The LOUD AND ANNOYING clock did not wake her up. I think that will change.

I Have Learned

  • Kindness returns after 2 mugs of black coffee
  • Cheeriness requires more coffee
  • Grumpy can last all day if you allow it to.
  • Maybe listen to the explanation while getting more coffee
  • Get her to take 7am meds and get breakfast
  • If she wants to make Christmas cookies, let her.
  • Her conversations will wander all over the place when she has slept poorly.

Carpe Diem.