You Don’t Know

You do not know when you will learn something important. This seems especially true when care partnering with a dementia patient. Once in awhile I get a glimpse of how much Cheryl is struggling with her surroundings and may or may not understand what is happening around her.

Her friend Cathy came to visit her yesterday. They sat and talked about various topics. I left for a bit to do some grocery shopping and pick up a book from the library. When I returned we all chatted for a little bit as I finished cooking some goetta and packaging it for consumption later.

Cheryl experiences something called Capras syndrome. I only learned the name for what she seemed to be doing a few days ago. Knowing the name for something is not reassuring. My engineer head wants to know how to fix it.

A person with Capgras syndrome irrationally believes that someone they know has been replaced by an imposter. In some cases, they may also believe pets or even inanimate objects are imposters.

from Medical News Today – https://www.medicalnewstoday.com/articles/320042#symptoms

Usually this occurs late in the evening and she does not know who I am. Sometimes though she does not know where she is and has a strong sense of being in the wrong place. Yesterday when Cathy left she was unsure of the ending and as the afternoon went on she expressed the thought that she did not like staying in someone else’s house when they were not there. She thought we were at Cathy’s house. I did not catch on to her confusion until much later in the evening.

This site has information for professional care givers but I find their information useful. https://www.scie.org.uk/dementia/after-diagnosis/communication/conversation.asp The discussion about finishing a conversation is something I will pay more attention to when we have visitors.

Finishing– Just as you prepared to start a visit and conversation, so you must think about how you will bring it to a close. If you are leaving the person’s home, make sure you say goodbye. You should not leave the person thinking you are still in their home, perhaps in another room. This may cause confusion or anxiety.

Ensure you have their attention, smile, and let them know you enjoyed your time together and the conversation. Shaking their hand or touching them is a common gesture which gives them a strong clue you are leaving. Leave them reassured and let them know you look forward to talking again. If you are likely to be speaking to them very soon, for example later that day, say when you will return and leave a note close by indicating when the next visit will be.

from http://www.scie.org.uk

I do not do this as well as I probably should this many times a day. Sometimes she will come to look for me.

(For visits and visitors) When you are leaving the our home, make sure you say goodbye. Cheryl may think that you are still here, perhaps in another room. This may cause confusion or anxiety later. Ensure you have her attention, smile, and let her know you enjoyed your time together and the conversation. Shaking her hand or hugging her is a common gesture which gives her a strong clue you are leaving. Leave her reassured and let her know you look forward to talking again. She may want to accompany you to the outside door in our lobby area and check for mail.

Touch someone. How simple of a gesture. How much she is reassured.

Carpe Diem.

The Saddest News

Or what woman, if she had ten drachma coins, if she lost one drachma coin, wouldn’t light a lamp, sweep the house, and seek diligently until she found it? When she has found it, she calls together her friends and neighbors, saying, ‘Rejoice with me, for I have found the drachma which I had lost.’

Luke 15:8-10

In December of last year I purchased a chain of gold for Cheryl to put her 25 year wedding band and her engagement ring onto and wear as a necklace. She had complained for months that her rings were falling off her fingers. She wanted a chain to put them on.

The woman who waited on us at Effler’s Jewelers smiled when I told her what we wanted. I told her to think high school and a senior ring on a chain. (The memory makes me smile. Cheryl is my high school sweetheart, my prom date, where I am home.) She tried it on and pronounced it good, maybe perfect. After a week or so she determined that the clasp was a bit too tiny for her numb and shaking hands to manipulate when getting it on and off her neck. We returned and the jeweler was able to attach a larger clasp. Later she discovered that she was able to ease it up over her head without unclasping it.

She unconsciously would touch her rings and put her fingers through the rings while the chain was around her neck. It would occasionally become tangled and knotted. With another trip to the jeweler I was trained to unknot delicate gold chains. (wooden tooth picks work great) The occasional dissension broke out about wearing it to bed at night. Eventually it was carefully placed in the special box that came from the jeweler originally. The placing in the box became a nightly ritual.

As time went on she added a couple other special rings that she had in her jewelry box. For the past couple of months she has been wearing it with four rings.

In October of this year they are lost. A few days ago as we were traveling somewhere, I noticed that she was putting on a different necklace and I asked her where her ring necklace was and she said, “It’s in my pocket.” I now suspect it was not but at the time I thought nothing of it.

I know that I should not feel guilty about the disappearance of the necklace but I do. I suppose it is the care partner, the 50 years of marriage partner, the help mate, the one who panics most when she falls, the one who is not losing their memory – in me. I feel like I have let her down. I have made it my job to keep track of her stuff and mine.

Tony! Don’t be a phony. Help us out her. THE NECKLACE IS GONE.

Carpe the St. Anthony Diem.

the necklace is BACK!

Update: The necklace is back. It was recovered from the chair she is sitting on. Moral of the story – Don’t make the disease harder than it is. Sometimes stuff just falls in the crack between the cushion and the arm of a chair. (Sorry Tony. You are not a phony.)

Carpe Diem.

Dementia and Daily life

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.)

A Different Reality

Where is this?

Cheryl awakens in a different place each day.  She thinks that multiple people bring her morning meds to her.  She sees multiple copies of her things. Why do we have so many bathrooms?, she asked me.

It takes a bit of time and a bit of routine for her to get a grip  on reality.  I promised to not tease her and always tell the truth. Sometimes her grip on the actual world around her is tenuous.

It makes me sad. This behaviour is presenting more lately. Mostly in the morning but sometimes we have talked about it at other times as she works through her perceptions.

Pick yourself up, dust yourself off and carry on.

I can’t find my…

Parkie Reasoning

Both of these control where things are placed by people who do not have Parkinson’s Disease (normies). Both of these control where things are placed by people who do have Parkinson’s Disease (parkies).

Is there an easy caregiver solution to the frantic search for …( name item here)? Nope! Unless you carefully watching what movement occurred immediately prior to the loss of (name item here) you should search an area with the most light.

Add some humor to the search. PD sucks and stuff is lost along the way.

Leading Indicators

She did not sleep well because of thinking about anxiety for family and  staying up late – past 11. She was off most of the previous day. More sleep into the morning is impossible.

All indications of the day to come?  She is very tired. At 8:30am, I help her back to bed for a nap.

At 10:15am, oh what a beautiful day! She is awake and only off schedule for meds by 15 minutes.

Interesting conversation when she came out — Isn’t it amazing how much this place looks like ours? She said. Whenever I come out on this floor I’m amazed.  All the same pictures like we have are hanging up. I agree it is amazing. I say it is very much like our old place.

In our old house we had two floors.  She still uses this terminology and I do not correct her. Maybe I inadvertently promoted two floors in her mind? She complains of hunger but is unsure of what will satisfy that hunger. I suggest a couple of the cookies we made a special trip to buy yesterday. She brightens and says yes to that idea.

She is improving while I watch her eat some cookies and OJ.  Working the puzzles in the newspaper is her favorite awakening activity.

She seems okay for the moment.  I will go back to my baking. When I come back from assembling the fruit pocket with yellow crumb topping the conversation turns to Catholic church and thoughts of a female priesthood.

She ponders the future of any of that and compares it to our used-to-be Sunday dinners. A reminiscent memory of times past brings forth tears of regret and sorrow over experiences lost to time. At our old home – a five bedroom house with plenty of space for kids to roam and adults to sit and converse around the table while waiting for digestion to make room for dessert – we often had many for Sunday dinner. Those days are happy ones. They are fond memories.

These days of a smaller place and dealing with Parkinson’s disease do not allow for that in our home. (It is perhaps time for the children to start that tradition but they seem uninclined to do so.) It is understandable. Their families are young and vibrant. Many distractions occur on the weekend. Feeding old folks is not one of them.

The oven beeper rings out its merry song! The baking is done! The baking is done! Come get the baking. It is done. (smiley face) Here is a picture. The only thing left is the icing but they have to cool for that to occur.

Cherry pocket Coffee cake: undefined my drizzle got away from me.

I like to bake. On another part of this blog I published my Cinnamon rolls. I could go through in laborious detail how I make these coffee cakes. They have become Cheryl’s favorite. I make them often.

In the midst of this scribble my sister-in-law in Florida announced she is negative for Covid-19. That’s really good news but her doctor believes she may have clots developing in her lungs. That is ominous.

She walks by to announce she is taking a shower to get cleaned up. We have our listening for thumps segue and she goes to get cleaned up. All was going well again, but, alas it was time for the 1PM meds. In fact she was late taking them.

This has turned into a rambling account of a day in the life. I did not intend it to be but this day, for whatever reason, is hard on Cheryl. I think that even though she knows there is little she can do for her sister from so far away, she is very anxious about her.

These two women slept in the same bed as children. Often in Cheryl’s dreamlike state in the middle of a semi-dreaming world she will see her sister. She has several times asked me in the morning if Jan had gone home or when did Jan leave? Jan is part of her hallucination that occurs often in the early morning brightening gray light. Their connection is strong through PD and yet their symptoms and treatment are so dissimilar.

We are able to take a walk at about 2:30PM. I admire her persistence. It can be hot in Ohio in July. So we take a walk of about a mile around this little park nearby. It is slow going but we get through it by resting in the shade occasionally. The reward is a stop at a nearby creamy whip ice cream store.

We have decided on waffles with fruit topping for dinner. That was going to be breakfast, then lunch. It became dinner. (smiley face) Things take a little longer in the parkie world. Sometimes you get waffles for supper. Other days not. She is laying down again.

No more pertinent updates from the Florida chat line. The text messages have gone quiet for a while. Perhaps we can sup at 6PM.

Time to get started just in case it happens.