My search for grace and meaning after a former care partnering life with a wife who suffered from Parkinson's disease and dementia giving her a confused and disorienting world.
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.”
A good friend of Cheryl’s from church organized another luncheon with her and another mutual friend today.
Back in the bygone days of younger kiddos and the everyday working world, Cheryl was part of the group of women (mostly) who decorated the church for various holy days or other events in the church calendar. Often Cheryl’s job was to clean and press and arrange the alter cloths just so. The group would spend an evening or Saturday decorating the church for the occasion.
These days are gone for her and the decorating committee and St. Ann’s sodality has thinned over the years. Today however Cheryl and Barb are hooking up with Diana, the team leader, who has moved to a retirement community with her husband on the other side of town.
It gave me time to experiment with banana bread and fool around with other things. Maybe even blog a little.
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 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.
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.
In a previous post I wrote about finding a little card entitled “The Art of Marriage” in Cheryl’s purse. As I unwrapped and unfolded the little package in her purse I was very aware of the fact that it was none of my business what she kept in her purse nor why she kept those things in there. Nevertheless, faced with various requests for help, like, I can’t find my black comb or I have lost my glasses, I try my best to keep up with how objects and things are pared up, associated together in her newly confused mind.
I am guilty of looking around through her stuff to help her keep track of her stuff. I have no other interest in her stuff. That is my defense when I am caught. So far so good. I have not been caught yet. She thinks I am really good at finding things. If you know who would think to look in the freezer for a comb or used Kleenex for example, then you know someone who is care giver to some person with some variety of dementia.
Punding is a term used by the Norwegians or Swedes to describe the activity of mindlessly sorting or aligning objects, often random objects, in a fashion known only to the person doing this. I believe the term means “blockhead” Swedish.
In Cheryl’s case this behavior manifests as organization of articles and documents in preparation for a meeting or some other activity. She ran the early computer tech program at Nativity School when our children went there. Having no educational background caused her to be constantly looking to others who did, attending meetings and reading articles. She was excellent I am sure simply because she was aware of her weaknesses. She also helped her mother send cards and notes to family and friends to thank or take note of various occasions such as birthdays, holidays, anniversaries, graduations or merely an invitation to dinner. To this last Cheryl has kept many thank you notes from her mom for Sunday dinners over the years.
She gets these out and sorts, re-reads, thinks about her mom and shows them to me as though she received it in the mail today. Often she will say, I got this card from Mom. Or I got this Christmas card from (whomever).
She collects these in various clumps and collections. Some are in manila envelops. Some are in small gift bags. Some are collected in stacks with a rubber band around them. Some are in stacks held together by spring clips. Sometimes they may make some sense to me, sometimes they make no sense. No chronology. The collections can be totally random.
As she looks at the cards she reminisces about the old times. I used to point out that she was looking at a five year old Christmas card. I find that unimportant to do now. The activity is totally harmless. Late in the evening she is amenable to “I can help you with that tomorrow. Let’s go to bed and rest so we are more alert to work on that.” And we trundle off to bed tired from another day.
One can always learn new things if you open your heart to the experience.
Recently we met with a dementia specialist. It was not intended on my part to be one on one but as it turned out it was. She had several key points to deescalate frustration and anger. Like many things that happen these days with Cheryl and me, I often forget which people and services I have investigated before. Theresa Youngstrom is a nurse and a dementia specialist. In a previous post I quoted these points from her website.
This company wants me to buy a device that pretty much tells me I am not dead yet. I already know that. I run to the store and run to the library and run to the doctor fairly often. I am pretty sure I am still running okay and not dead.
Many people, probably most, spend a great deal of time running here and there. It is ingrained in us. We chide each other if we are not active. But instead of running what if we took a deep breath and stopped to look around at God’s wonder of Spring and the renewal of life. It happens every year. It is truly amazing.
Breathe and notice the world. Run for exercise and health but do it outside where He can show you His wonder.
Adjunct_Wizard 