Today – Is it Christmas?

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Yesterday evening when we went to bed she told me that today she wanted to put up the Christmas tree. My response was sure tomorrow is a good day for that. She slept undisturbed overnight.

Earlier after a breakfast of pancakes and fruit she told me that today she wants to put up the Christmas tree. We have a niece who has a party theme of “Christmas in July” around her newly rehabilitated back yard pool. (Jill lives five doors north of Sherlock Holmes. For those who read Sir Arthur you can deduce her address.) I have been keeping Cheryl apprised of the decorating progress as Jill has posted pictures on her Facebook Party page.

We went to Jill’s party last year. Of course we will go again this year. I will not remind Cheryl about her idea to put up the Christmas tree. I want to see if she remembers it for a longer period. (Overnight does not count. She often remembers her dreams from overnight.) And to be honest about it I do not want to put it up. Only I will be doing it and I have to rearrange furniture to do it.

So today I will live in terror of having to put up the Christmas tree. Or I could embrace it. The jury is still out.

Carpe Diem.

I Suppose it is True

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One cannot be certain where the day is going when the person you care about most is dealing with Parkinson, memory loss and rapidly developing dementia. I have not spent much time away from Cheryl in my mind lately but Edie’s words made me think.

NEVER REGRET A DAY IN YOUR LIFE: GOOD DAYS GIVE HAPPINESS, BAD DAYS GIVE EXPERIENCE, WORST DAYS GIVE LESSONS, AND BEST DAYS GIVE MEMORIES.

— from Edie Kynard (a friend on Facebook)

The past few days are oddly jumbled up in my head. Yesterday we continued to track down Cheryl’s cousins-that-she-has-not-seen-for-awhile and had lunch. We picked up Lois and in keeping with our plan went to eat in a restaurant we had not been to before. Wild Mike’s it was called. Sort of a cross between a diner and a sports bar. In Cincinnati how you tell that is the place sells boneless chicken wings, real chicken wings, hoagies and hamburgers. It was a good time and we stopped in with Lois for an hour or so and Cheryl went through her family reunion book with Lois.

This afternoon two of Cheryl’s friends came to visit for awhile. I went to the barber for a much needed tune-up. I enjoyed the camaraderie of the barber shop that I have been going to for 50 years or so.

In the evening I made dinner in the oven as rain was predicted and I did not want to grill out in the wet. We ate on the back patio waiting for the rain that never did come. Cheryl pronounced it good and ate most of it. We did not argue. We enjoyed a random conversation about plants and rocks and things in the woodsy area behind our condo. She told me about some kids in the trees that I could not see. I asked her what they were doing. Just hanging there she said.

And today, although it was not best, is a good memory. Tomorrow she said as I helped her to bed – I want to put up the Christmas tree.

Carpe Diem

Cheryl likes Cookies

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Today is Snicker Doodle Day again. These are simple sugar cookies. I added a new twist and put in a teaspoon of almond extract into the cookies dough. (Maybe two tsp. next time) I also added a tablespoon of psyllium husk power for added fiber. Parkies need as much fiber as they can get.

This basic recipe comes from the Betty Crocker Dinner for Two Cookbook. Cheryl has been making these cookies for 50+ years. Her face lights up when I make them.

Carpe Diem.

It is a Messy Disease

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Cheryl never likes it when I suggest she should take a shower. She accepts that information as me telling her that she stinks. She does not but I keep track of how often she washes herself in the shower. She can no longer remember that information. So, when I ask if she needs any help taking a shower and getting cleaned up and she snaps at me, I ignore it as I am able to do.

It hurts occasionally and I react to that sometimes but I feel in my heart she does not recognize the hurtful comments she makes sometimes.

Another “goal” is to keep her safe and not walk away no matter the vindictive.

Carpe Diem.

What are My Goals?

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My sister said that maybe I should reevaluate my goals for Cheryl. I interpreted that as not specifically goals but what am willing and wanting to do for her care. Considering myself and my health in that same equation.

Hmm, lots to think about there. Recently I bought a new transfer chair to help me maneuver Cheryl around various places that I felt were too far for her to walk. My original thought was graduation and parties. We had some of those coming up.

It was a convenient method of transport so much so that I opted to take it to Florida on our little trip and not Cheryl’s super-walker from U-Step. In retrospect it was both a mistake and a smart move. I did take her “in house” walking frame. She had support at night and in our rental condo. A beach wheelchair was free for the asking we merely had to make a phone call to the life guards.

I pushed her across the street to get ice cream a couple times. that would have been a car trip if I had not had the transfer chair. — Convenient. Getting her into and out of the ladies handicap bathroom/stall — INConvenient. Live and learn mom used to say. We will keep using the transfer chair. It is how I get her out of bed to the toilet to the kitchen. It works great for that. I have not had any back issues. She does partially support herself.

I have started to think — actually I have for some time — I need to get my act together before I start helping her get her act together. In that instance I am not in a hurry for me and I can be calmer (I am still not good at that part.) at least while I am helping her. I have learned to anticipate her moves.

When we were at the neurologist earlier this week he asked if we would like to talk with a doctor associated with their practice that specializes in palliative care. We will see how this all plays out. Are we near the junction with another road?

Carpe Diem

Doctors Week is Tiring

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This week for lack of a better description was doctors’ week. We saw both our personal care physician and Cheryl’s neurologist a movement disorders specialist. He made some minor adjustments in her meds schedule and added one new one to help with anxiety and perhaps some depression he detected by interviewing Cheryl.

Prior to these visits over the past couple days Cheryl slept poorly. This morning she is sleeping in. She was relieved last night when I helped to bed with the fact that we had nowhere to go today. We had no doctor visits. She did not have to be on her toes to answer questions about how she feels that could make her feel sad. I think she is very aware that she can cry easily and is unable to control that response. Her neurologist is very gentle and recognizes her disease’s progression in her body.

It was very hard to maintain her showtime persona yesterday and the day before. I am gladdened by the fact that it is over for a few months.

I helped her up out of bed and into the kitchen for breakfast but I was premature. She kept her eyes closed in the kitchen. She seemed uninterested in breakfast after all. I asked her if she wanted to sit in the lounge chair and doze for a bit. She did.

I talked to the physical therapy folk to schedule the PT recommended by her neurologist. Eventually she awakened as I put a pillow under her left side because she was drooping that way in the lounger.

I rolled her back to breakfast. She ate and looked at the paper. She did not work the puzzles.

I talked to my Portland sister. She often makes me rethink things. The doctor has diagnosed Cheryl with some mild anxiety and perhaps depression. The brain floats in a sea of proteins and chemicals. Parkinson messes with that. I do not always recognize my own needs as a care partner.

The next phase begins.

Carpe Diem.

Today Cheryl took my Breath Away

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Allison is a wonderful young woman who has been cutting and styling Cheryl’s hair for some time. She had been operating out of a salon on the second floor of a business front in our old neighborhood for some time. Many years ago when Cheryl had foot surgery I asked her if she could come to our house and do Cheryl’s hair while she was stuck in a chair waiting for her foot to heal. Allison said of course she could. She had several clients that she took care of at their house.

Cheryl visited her in the salon for a couple years after her foot healed but eventually it became too much – the stairs. I asked Allison if she would visit us on a regular basis and a new relationship of service started.

As Allison was getting ready to leave and I handed her a check she said let’s set up a date for here next hair visit. I got out the calendar of all knowledge and we looked at August dates. Weeks-wise the next date would be August 23rd but that date interfered with something for her son Paulo. She suggested either August 30th or September 1st. I picked August 30th.

August 30 is the anniversary of the day we met. It was August thirtieth of 1966. It was a blue moon. Cheryl remembers that. I would to report to you that I remember it succinctly but I would be lying or at least making up stories about my youth. She remembers that it was a full moon. That fact caused me to look up astrological data to find out it was a blue moon. It is a blue moon this year too. I told Allison the story of our meeting.

After Allison left Cheryl talked about her death, something that every human is able to imagine. Cheryl said to me, “She is such a nice young woman. She didn’t mention that I won’t be here then.”

I replied, “What do you mean by that?”

She said, “I will be dead by then.”

I sat down to have a conversation but I was too dumbstruck to speak for a minute. I wanted to know where that thought had come from. She did not have an answer but she was adamant about it. “I’ll be here in spirit”, she said. (Wow. I thought.)

I don’t know what to make of that idea that she has or had for that moment in time this morning. What I do know is that I will be more alert to her needs for the next few weeks.

Carpe – blue moon – Diem.

An Anagram for Heart

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I am happy to learn things wherever they come from. This morning working on the Wordle from the NYT I happily learned that heart is an anagram for earth. It makes me think.

I have often thought that I might have a touch of dyslexia. I have thought this ever since I learned what dyslexia is probably sixty years ago.

Early in our married life I would say that I have date dyslexia. By this I meant that although I knew exactly when Cheryl’s birthday is, I felt no urgency to react to the fact that my wife’s birthday was coming up in a few days. That is probably not the best example but it is one that I used often.

Maybe it is just numbers that somehow fascinate me. Even though they are in order I do not look ahead on the line.

Riding my bike today I stopped to take a picture of a plant that I did not know. A friend told me about “Seek” which is an app that identifies flora and fauna that you take a picture of. It works great when the fauna sit still.

Flora are easier. I found an American Black Elderberry. A quick search of Wikipedia revealed that The fruits can be used to make wine and jelly. I think there is a song that mentions elderberry wine.

One never knows where a snippet of knowledge will come from. The unripe fruit contains cyanogenic compounds but less so than apples. The Iroquois used the inner bark to treat toothache.

Enjoy the Earth around you.

Carpe Diem.

Some Days it is Tiring

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This week is filled with doctor appointments. My Saturday and Sunday was filled writing a lot of notes to her movement specialist through My Chart. My Chart is picky about the amount of information included in any message to the doctor or nurse practitioner so I write it out and then edit it in a plain text editor breaking it into usable and still readable chunks.

MOVEMENT – Cheryl seems to have more balance issues. She feels wobbly daily at various times during the day. She actually falls backwards to the floor or into another piece of furniture about once a week. She seems to get “stuck” sometimes when doing some chore but it is hard to tell whether this is physical or indecision about what to do next. Her voice seems have gotten softer and quieter. Her conversation disappears in a noisy restaurant.

SLEEP – She is generally sleeping later in the day. She gets up 9:30 – 10 am typically. Occasionally earlier but mostly later. I have adjusted most of her appts to later in the day. She talks in her sleep and occasionally acts out but no violent movements. She is incontinent (urinary) overnight – during the day she has little sense of when she needs to empty her bladder until it is an emergency. Her dementia seems to affect this – she does not think to do it periodically.

MEDS – Most days 5 out of 7 her 7 am meds are at 10 am. (2.5 Sinemet/1 entacapone/1 donepezil) Skip 10am dose. She continues every 3 hrs until bedtime (2 sinemet/1 entacapone). 7pm meds are 1 sinemet/1sinemet CR no entacapone. Bedtime is 10-11pm. quetiapine 1 1/2 of 25mg and 10 mg melatonin at 9:30-9:45pm. 10mg donepezil first in morning instead of night time to help with overnight incontinence. Midodrine 1st, 1PM, 5PM.

DEMENTIA – continues to worsen. Memory issues – finding names. finding words, occasional hallucinations and a sense of “others” nearby. Delusional ideas about moving in the evenings. Spacial ideas about upstairs/downstairs persist. (We have a one floor plan condo.) She sees lots of bugs both real and hallucinational. A new thing is the sight of a bird in our bedroom. (She may have a floater in her vision – Eye Dr. appt in Aug.)

OTHER – constipation is a big issue. Cheryl is very private and will not tell me unless I ask about BM. And then I sense she is merely trying to please me. I combat this with psyllium husk fiber in various things I cook for her and miralax in orange juice and ducosate sodium stool softeners. She sleeps better when BM happens.

… have other patients reported problems with the CR version of carbadopa/levedopa? Recently I gave her 1 CR tab after 7PM with her bedtime pills in the hope that she might be able to move easier overnight and get to the toilet. Cheryl’s reaction was to stay up overnight in a sort of awake dream – it was very scary .She has no memory of it. I give her 1 CR tab in the evening at 7PM – about 30-40 minutes later her dyskinsia is very pronounced especially if she is seated – she lifts one leg and waves it around. This does not happen during the day with her regular c/l.

MORNING ROUTINE – has changed a bit. I bought a transfer chair for her and used it to help her get to graduations, parties and a Florida trip. I may have gotten her used to riding instead of walking. I now load her into it from bed – to the toilet – into the kitchen for breakfast. It is easier to maneuver her around. It is really inconvenient in public restrooms.
Thanks for reading. – Paul

It is a summary of what we are dealing with day to day. As I am writing these notes to him I am thinking about how many patients he has and how he sees her for 30 minutes or so every 6 months. Each one of these paragraphs fits neatly into the My Chart format with a few characters left.

I hear Cheryl cry out from the other side of the condo while I am writing this. She has fallen again. She bumped her head this time. There is no blood. I have reusable cold packs from Walgreens.

Silver lining – she had been talking about going home to watch TV. That thought went away when I got her into the lounge chair to rest her head on the cold pack for awhile.

She is in frail mode for now.

Carpe Diem.

Hoping against Hope

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For many weeks about eight or so Cheryl has been aware of where she is at night. It all vanished tonight and I drove her around the reset block back to our condo and home.

A dark starless nightmare as I prayed the trip would take her mind home.

I found an old movie called “Nebraska” and we had been watching it for 30-40 minutes. Cheryl seemed to be following the story line. I believed that she was anyway. After forty minutes or so after taking her bedtime pills she announced that she wanted to go home. I clarified like always do with response- we are home. We went to church, then to a restaurant and came home to here where we live. To which she responded that she wanted to go to her “other” home. Her imposter syndrome had reared its ugly head.

I wonder what triggers this delusion. The movie dealt with early dementia issues in the main character’s father who read the clearinghouse sweepstakes mailer and believed that he had won a million dollars. He wanted to travel to Lincoln Nebraska to get his winnings. His son humors him rather than fighting his father’s delusional behavior and make a road trip to Lincoln. Things happen along the way as the story unfolds.

We have watched other movies and Cheryl merely announces that she is tired and wants to go to bed. Tonight she wanted to go home to bed. Tomorrow she will have no memory of this episode. I will not mention it. If she does we will talk about it. She will not mention it though. If she does it will be the first time.

Carpe Diem