FIND RESPITE

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 aroung a Jacob’s hook holind a hanging plant Cheryl got for mother’s day.

Five minutes but peaceful and rewarding.

Carpe Diem.

History of Overnight

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.

The Caregiver Helpbook (3rd Edition)

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

Observations of Lack of Sleep

Scott was here last night to be with Cheryl while I visited my stock club meeting. The fourth Monday of every month is the meeting of our little stock club. We started this little club in 1984. Over time we swelled to 20 members but the past few years attrition and death has shrunk our number to eight. And over the past few years the meetings are more social than business. Where else can eight old men get together and trade war stories about getting old, fortunes missed, grand children achievements, the proper temperature of beer for drinking, Parkinson’s disease, prostate problems, cataracts and hearing issues, but in the backroom of a local watering hole near a railroad track? It is always fun and over the years I have rarely missed it.

Before I left for the meeting Cheryl’s stomach was bugging her a bit as happens occasionally after her 4 pm meds. When I returned I asked her if she had eaten anything. She said yes but behind her Scott shook his head no. She answered my question how she thought I wanted her to answer it.

Eventually about 11:20 pm we went to bed. Over night she was fidgety and got up at 2:30 a.m. to make a list so she would not forget something. I sat her at the kitchen table with subdued lighting and with paper and pencil she worked on her list.

Her list is a business memory. I sat with her and about 3 a.m. she decided to sleep some more and finish later on. Buzzing around in her mind these days is the thought of creating a database of birthdays for the people in her family. Many times and in many instances she has started this task. Just like engineers this thinking starts with a pad and paper. Often sketches are made to indicate data flow and information input. Just like an engineer Cheryl’s notes switch back and forth from cursive to printing. And although she had an urgency about this activity in the very early morning hours, she had no ideas about what it was or what it was for in the daylight hours.

She seems so fragile to me in the morning lately. She is still working on the remnants of some dream as she awakens. This morning she got up and went into the bathroom. I got up also and put clothes on, got some coffee for myself and turned on the CBS news to see if any new wars developed or any movie stars got divorced overnight. About 20 minutes later I went back to check and see if any help was needed or if there were any special breakfast requests. She was seated on the closed toilet waiting for someone to bring more toilet paper. I showed her where the extra rolls were and asked if she wanted cereal for breakfast. Yes was her reply. I returned to the living area.

About ten minutes later I went to check again and she told me she was still waiting for someone to bring toilet paper. The thirty minutes of database design time in the middle of the night messed up her waking pattern.

More and more she seems to have a slow switch from early morning confusion to present. I have not found a solution to any of this confusion and delusion. I listen to her conversation and make a lot of rapid decisions about how to respond. If it seems like she is getting ramped up about someone coming (that I know is not) I try to gently steer her toward the correct thinking. If she is getting fired up about having a family gathering I merely agree with her plans.

On this particular morning she was concerned about whether David was going to show up any minute to cook the Thanksgiving turkey. It took several repeated conversations about date and time but eventually she seemed okay that Thanksgiving day was not today. Over several hours she came to the conclusion that she should take a shower and get ready for her exercise class. Over those same several hours I planted various seeds of the idea about taking a shower and looking for exercise clothes to wear.

Me and how I feel – It is wearying for the care partner to both console and encourage and direct and deflect her delusions and my own background anger (too strong a word – disappointment?; discouragement?; vexation?) with her brain and how it is operating with PD. My question – Why can’t she have the movement issues without the mental disability? (God are you listening? Why her? She has always been a sweet person. Why did you dump this crap on her?)

Observations about my reaction to her needs – (Shit! Not again. This is the same conversation we had 15 minutes ago. whiskey tango foxtrot.) How can I help dear? Cheryl – you can’t help. Perhaps not but let me hold your purse for you while you get out of the car.

Is this genuine love? … To have and to hold from this day forward, for better or for worse… Those where part of the original agreement. Too late to back out now. She looks so sad and distraught when she realizes that she needs me to help her up from the chair because her scoocher is busted. It is heartbreaking.

Carpe Diem.

For the First Time Early this Morning

Cheryl went to lunch again with a friend yesterday. Barb had arranged a luncheon with another member of the church decorating committee. (See my previous post)

They were gone for a long time about five hours. When Cheryl got home we talked for a bit and she went to lay down. I think she actually fell asleep for about thirty minutes. Or, at least, she was very still for a while when I went to check on her about an hour later.

In the evening she declared herself tired a about 10 PM and she went to bed. After a few preliminaries she was laying down at about 10:20. I remained up to read as I usually do before retiring. When I came to bed about thirty minutes later she was still when I laid down.

At 1:30 AM or so she was restless and awake. To the bathroom she went. I helped her a little with the toilet because she has confusion and balance issues in the middle of the night. She lamented that she really needed to sleep but she was fidgety and agitated. Nothing I could do seemed to help. I began to think that my presence was disturbing her. She couldn’t get comfortable.

She stayed in our bed. I got up and opened our sofa bed in the living area. I had never slept on it before. It was a new purchase we made with the mad money that we got from the federales during the height of the pandemonium. After a couple false starts and finding a blanket and my pillow from our bed. I fell asleep from 2:30 until about 5:32 AM when my bladder reported fullness to my brain. That is a much longer span than laying with Cheryl fidgeting her way back to sleep. The sofa sleeper itself while not perfect was quite comfortable to sleep on.

I will have to study the living room area floor plan and think about things some more. I had to rearrange furniture in the early morning hours to open the sofa sleeper. That was a little inconvenient in the dark.

Perhaps we are at the stage of her disease and our lives when we will need different sleeping arrangements.

Alas and Carpe Diem

More AHA Moments – Boats

Cheryl told me she is scared to be on her brother’s boat.

Recently Cheryl’s youngest brother invited her and the rest of her living clan and clan-in-laws for an evening ride on his pontoon boat that he moors in a small man made lake near his home in southern Indiana. I am always on the hunt for things to do with her that let her socialize a bit out of and away from our little condominium living situation.

Since Ken’s text message came to me on the family text chat, I told her what he proposed. Cheryl responded with, “I will think about it.” This is a phrase that she learned from her mother as a small child and she has used throughout our fifty years of marriage and many times during our child rearing years. Roughly translated it means “NO” or “no thank you.” But being the polite person that she is, she does not want to hurt anyone’s feelings, she rarely says no directly. (She also learned this from her mom.)

Cheryl has a lot of her mother’s traits. She does not want to put anyone out. She does not want to offend anyone. She can be angry with me as could her mother when she thinks that is appropriate, as when I am being pushy. She does not want anyone to stifle their good time by worrying about her welfare. She is okay with isolating herself to (her perception) benefit others. She enjoys the presence of small children even if the small children are unsatisfied and complaining about it. She enjoys the presence of big children and wants to be a part of their life even if the big children are uninterested in letting her in. She likes big family gatherings.

Most recently she has a new special Parkinson’s patient walker to help her move around with steadiness. After her appointment with her MDS neurologist on her birthday several days ago, I ordered this for her. In the picture is her new U-Step. I should have gained my AHA here since I just ordered this over the phone three days ago. (I am buying her a stabilized walker and suggesting we go on a boat that will wobble every time someone moves.)

U-Step walkers are designed specifically for folks with PD to give them a strong base to walk with and against

But, getting back on track, she said to me that she is scared to be on Ken’s boat. That is the first time she has ever expressed that to me.

AHA MOMENT – Occasionally these pop up and I cannot always understand her needs. Prescience is not a strong trait of mine. But imagine for a minute, here is a person with balance issues and I am promoting going on to a less stable surface than she is used to. She can lose her balance and fall backwards when changing positions in our living room. Our building is built on a slab. It is hard to get a more stable surface. AHA (you moron).

Ken caught on pretty quick and proposed dinner tonight on the deck at Willie’s restaurant next to the puddle (his term for the man made lake.) Tonight is anything goes pizza Tuesday. Willie’s fits into the anything goes part of pizza Tuesday.

We will go tonight and take the new walker for practice and hopefully greater stability.

Carpe Diem.

Once in a while the road seems straight even when it is not.

Friday the Thirteenth

Friday the 13th comes on Friday this month. It is a little joke I have. An old boss of mine during my working career who is also a good friend used to make that comment when it was appropriate. It seemed to him that mystery problems would appear on Friday the 13th. Engineers love and hate mysteries.

A friend of Cheryl’s came to take her to lunch today.

I am waiting to see how it turns out. Barb is aware of Cheryl’s issues but we often only see her at church. Cheryl will have a chance to practice her “showtime” persona.


The lunch was great. Cheryl had a great time with a good friend and she brought home leftovers that she may or may not want to eat. The went to a Asian restaurant called the Blue Gibbon. Typically when we go to a Chinese or Asian restaurant she will order egg rolls. Nothing else for her, she only wants egg rolls which the restaurant people want to bring as an appetizer. No amount of english, american english, spoken to a person whose first language is not English can convey the meaning of “bring as her meal”.

The last time we went out to dinner at a Chinese restaurant (Uncle Yip’s) I ordered her egg rolls, some spring rolls for me and another dish that I like and I thought she would like. We had tea. The waiter brought the the egg rolls,spring rolls and asked if we needed more tea. Later he brought our shared dish. It worked out just fine. She was not embarrassed to eat ahead of me and she did eat a little of what I had ordered to share. The smart waiter brought us extra plates.

Uncle Yip’s, by the way, is the closest thing to actual Chinese cuisine that I have found so far. I visited China about ten years ago for business. And the owner’s and wait staff’s first language is not English.

Carpe Diem.

We Danced Last Night

Last evening after dinner we danced for a bit.

Cheryl was going through a bit of confusion as I put dinner on the table. She kept getting up to look for her deceased sister Janice. (She called her Janice instead of “Jan.”) Eventually she was satisfied that Jan was not here to eat with us. She became interested in food and ate what I had cooked. (Chicken, noodles, green beans and broccoli)

I had put some music on the radio to play quietly while we were eating. Jimmy Buffet and “Margaritaville” came on when we were finished with the meal. I asked her if she wanted to dance. She said yes. We did.

For a few minutes we were young at a dance with Jimmy Buffet. Our dancing these days is more of a swaying-in-place but it is fun anyway.

A different time that we danced.

Carpe Diem.