“Not everything that is faced can be changed, but nothing can be changed until it is faced.”
I do not know much about James Baldwin. He was a black man and an author. He wrote “Go Tell It on the Mountain” and other things. He died a while ago. This quote which I tripped over this morning reading through other articles not from mainstream media as my sister-in-law likes to say, spoke to me. Lately, Cheryl has been struggling with seeing extra people in our home and upon occasion, though not wondering who I am, seeing me and sometimes not seeing me.
Yesterday evening she asked me if I had talked to Paul about something. I do not remember what the something was. It was not important . I quickly realized that she thought I was not me. I replied with I am Paul.
These moments seem to come early in the morning or late in the evening. It is dark. The lights are on here and there.
She talks about dad doing this and dad doing that. The first time she started telling me about dad was when I changed the dimmer switch on the light fixtures in our master bath. I had added a newer dimmer control with a toggle. I had thought it to be more convenient for operation in the night. It is and she approved of its installation. She told me so that night by saying – did you see the new light switch dad put in? It works great.
I did not ask who she thought I was. I merely acknowledged that it was a good thing that he put it in the bathroom.
That guy who brings the pills… is a common early morning remark lead in to some comment I said when I got out of bed to turn off the alarm and retrieve her first dose of medications for the day. There are many of these; That guy who brings the pills in the morning, he said we were going to the store today. (for example)
Extra people appear to her in our home. Not religious apparitions but little girls and sometimes their guardian an older woman will appear with them. A few days ago when I returned the bowl that had contained her pills and the water glass to the kitchen, she asked me what that woman wanted. I told her that there was no woman there. I was merely putting the glass away. She accepted that.
For many months, I had accepted that this observed change in her behavior and thinking was just a natural progression of Parkinson disease. This behavior does not present itself when she and I visit her neurologist. I sent him a note before our last visit. We talked about it at length when we were there last time.
We are in the midst of slight medication adjustments and a series of pathology tests to rule out any physiological problems that could cause symptoms such as these.
So far these are all negative which makes me a bit sad. She is in the minority of parkies that the disease affects her cognitive function.
It is now more important than ever to seize the good moments, live in the present and jettison the anxiety for the future.
Face the thing. Maybe the outcome can be changed. As a caregiver do not forget that you have greater knowledge of your loved one than the doctor does. Tell the doctor what you see. It will help to find a solution.
And don’t forget to Carpe Diem!
Who are you? Who, who, who, who? Who are you? Who, who, who, who? Who are you? Who, who, who, who? Who are you? Who, who, who, who?
Today is the day after St. Patty’s day. So what? Nothing what except we are now three days into the asinine idea of Spring forward. In another week or so we will be adjusted to the new med schedule but not yet. I could spend several paragraphs discussing the odd arguments pro and con to the whole idea of time change but it seems to boil down to a cover-up for a scheme to get more golf daylight without having to negotiate with each individual employer to do so. Who started this idiocy?
What a mess with a parkie! For those of you who are not taking care of a Parkinson’s patient on a daily basis, it is a crisis in disguise. The medication schedule is off by an hour all day long. I know from previous experience she will be miserable for about thirty minutes before each dose and then about thirty minutes after each dose as the meds kick in and the chemicals stabilize.
Assorted confusions appear in her mind. Early this morning when I got up and brought her her first dose of everything all seemed normal. I sat on the edge of the bed and waited as she did everything she needed to in the bathroom and then took the collection of pills I had set on the bathroom counter. When she was done I took the little glass bowl we use and the water glass back to the kitchen. Usually when I return from that we have a little discussion about what is happening that day as she is deciding to lay down a bit more or stay up. Today, she was still standing at the bathroom counter waiting. I asked her if she needed something else and she responded with she was waiting for that guy to bring more pills. I convinced her that there were no more pills for a few hours. And we had to go nowhere until noonish when her exercise class began. She seemed satisfied with that and we napped for a while more.
I awakened about an hour later and realized she was in the bathroom again so I got up. In the daylight savings time darkness I could see she had laid out some clothes that she might wear if she was going to church. I gently pointed out that we are not going to church. We were going to exercise class later. Anger and confusion appeared so I went to the living area to prepare for the miny tirade with some coffee.
In the kitchen I helped her get some cereal and dried fruit for breakfast. Life cereal with dried cherries is her favorite combination for breakfast with some orange juice. She ate that and I had some scrambled eggs with toast.
Afterward she started. One minute we are going to church, the next minute you say we are going to a funeral, and now you tell me it is an exercise class. Which is it! I do not understand why it keeps changing. Pointing out that she was dreaming and when she awakened she continued on in the dream, although appearing to be the case, was not the explanation she wanted. She was certain someone (me) was trying to purposely confuse her and she was tired of it.
Last night was very tiring she told me. You mean the business with the address list? Yes she said. I thought there would be more so I took my coffee to the chair I often sit in. On the previous evening she was organizing her birthday and anniversary card list. I had hoped to help her and simplify this activity last year with a new planner from Staples. All of the information I have installed in a spreadsheet that Avery can read so that I can print labels for each card. I printed labels and last year she carefully pasted the label information on the proper page in the new planner. Each month she gets out two or three old hand written address books left over from her mother and from her office before we moved to the condo minimum. I asked where the new planner book was and she responded that she uses that but it was going to take a year or longer to get the correct information in it. I incorrectly pointed out that she had put the information in there last year which caused an angry response so I quit talking about it. Eventually she became tired, took her night time meds and went to bed. So did I. It was early for me too.
And then she became calm. She got her sewing project and sat down to watch the early morning news with me for a bit. And I might be understanding the confusion. The old address books are crammed with a lot of info in a small space. The planner — being a planner like a teacher might use — is organized by month and day. We labelled it with the correct info on the correct day but her cognition no longer allows for that recognition. To her, it is a big black book with almost no information in it. I may have to create a cross reference by name and family.
On the way to class she suggested that we go somewhere for lunch. It started goofy but it may turn out to be a good day.
We went to our old favorite diner for lunch after the exercise class. We had not been there for more than a year. Her conversation was about the diner and old remembrances. The diner had been painted and the ceiling had been replaced. It was much brighter inside. Often something on the menu in one of these places will spark a memory of part of her family. This time an old friend that we had not seen for awhile strolled in to have lunch with her friend.
The pandemonium seems to slowly ever so slowly to be breaking free. “Hallelujah” is on the music loop at the exercise class.
Sadly the daylight will be saved whether it needs to be saved or not. Personally, I think not. The system is idiotic. Keep in mind China has only one time zone. Geographically that country is as wide as the U.S.
And Parkinson’s will still suck. Just more so while we stand still and the time zone shifts left or right.
As a part of our previous stimulus package spending we purchased new furniture for the living area of our condo minimum. (smiley face) The three pieces of furniture do not come with extra material to cover the armrests. My clever wife with Parkinson’s decided that there was no problem with that and she set off with a neighbor to the fabric store to purchase some suitable material to manufacture armrest covers.
Two of the chairs do not have arm rests that have a distinctive right and left shape. Those are easy peasy. The third seating area which is a small sofa has an ionic volute curve shape to the arms. Her arm covers have a right and a left shape to them.
The engineer in me leaped into the breach to explain how to make a pattern and plan to sew a right and a left. The Parkinson’s patient listened diligently but did not understand. Several efforts have produced two lefts, then two rights. two weeks later and listening to conversation between her and our niece who cleans for us, she is on the road to making a left which is finished and a right which she is working on.
She has started this several times before and somewhere in the project right became left. This time I will try to be unobtrusive and get to the sewing machine before right becomes left.
Parkinson’s requires gentle unobtrusiveness but it still sucks. Happy St. Patrick’s Day!
A nifty song by REM playing on Pandora or something when I took Cheryl to a physical therapy session with a nice young man from U.C. Health in Cincinnati. I wondered in my head, is it?
It’s the end of the world as we know it (time I had some time alone) It’s the end of the world as we know it (time I had some time alone) It’s the end of the world as we know it and I feel fine (time I had some time alone)
The lyrics are kind of stream of conscience similar to “We didn’t start the Fire” by Billy Joel. It made me think, is this a new way we are going to operate from now on? Mr. Joel’s song is an earlier history of an earlier century. But then he is about my age.
So, is it the end of the world as we know it? Is it the new normal? What is normal? My normal is probably not your normal and why do I hate that comment about it is the new normal. Simply put, what is IT? For a Parkinson’s patient abnormal physical difficulty is common. The part of the disease that is hidden, mental confusion, memory loss, delusion and sometimes hallucination is also normal.
Today for the first time I thought seriously about quitting the little part time job I have with a local community college because it takes me away from Cheryl. And yet, I need time away from her and the care giving. But I believe I need the time away to be on my own terms.
Perhaps I want to take a walk in the park by myself in which I am not part of her support structure. Perhaps I want to walk at my own speed which is much greater than hers but did not used to be. Perhaps I want to take a walk were I do not have to slow to a pace less than a stroll to allow her to stay with me. There are times when we creep around the circuit and I try to get her to take full steps. Perhaps this Parkinson’s has gotten into my head far enough for me to ignore my own needs.
Cheryl really likes to walk but it is a struggle for her. She really likes to play Scrabble but it is a struggle for her. She likes to think about and organize her support group for Parkinson’s folks but it is really a struggle for her. Lately she has decided to do puzzles, well one puzzle so far, as a hobby but it is a struggle for her.
This is normal. There is nothing new about it. It is not the end of the world as we know it. It simply is the world we have.
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.
– Max Ehrmann Desiderata
Desiderata by Max Ehrmann has become for me a meditation. I try to not distress myself with dark imaginings but on some days that requires drawing strength from a reserve that is depleted.
Michael is right. Parkinson’s sucks. Stay calm. Keep moving forward.
I have date dyslexia. There is no such thing! I hear you saying that. And maybe there is not a definitive malady called date dyslexia but I describe it thus. I know my wife’s birthday. It is May 10. On May first, I will think Cheryl’s birthday is coming, perhaps I should find a present or order some flowers and then I put that thought aside. On May second, I will think Cheryl’s birthday is coming, perhaps I should find a present or order some flowers and then I put that thought aside. On May third, I will think Cheryl’s birthday is coming, perhaps I should find a present or order some flowers and then I put that thought aside. At this point I am sure you can understand where this process is going. On May ninth, I will think Cheryl’s birthday is coming, perhaps I should find a present or order some flowers and then I put that thought aside with no more urgency than May first.
I know when her birthday is but I have no concept of whether that is a couple days away, a week away or a month away. Actually months are easy because they have different names. Over the years I have employed various devices to overcome this dilemma and I became quite good at fixing it in my business life and when Bill Gates and the boys invented Outlook, let’s just say, it was a dream solution. Now, however, I am retired and do not own Outlook on any home computer or computer-like device. We do have a wall calendar and I have a desk calendar given to me by our financial champions who manage our affairs. These two devices give a visual image of the map of the month and where activities lie within it. All that is necessary is to look at one or both calendars. If only it was that easy.
One of the symptoms of Cheryl’s Parkinson’s disease is confusion about time of day, day of the week, week of the month. Sometimes looking at a calendar – I think of the wall calendar as hers and the desk calendar as mine – specifically the wall calendar does not enable her to get her bearings about where we are in the months activities. This is bad news for me because she was the anchor of our family and social activities throughout our life. Countless times I have had to cancel plans made with my buddies after discovering that my golf game, beer bash or something was going to clash with another prior event scheduled on the calendar. No more! The guy with date dyslexia is left to manage the wall calendar events. Woe is us!
Winter in Ohio
It is winter in Ohio and in southern Ohio that means occasional visits with the white death of snow. Good news for the bakeries and dairy farmers. Bad news for the schedulers of doctor visits and for school administrators not as bad as it could be given the current stay at home covid climate.
What’s happening this week? – is the often asked question while she is staring at the calendar in the hallway. I responded with, “nothing today but tomorrow you will get your covid booster shot.” Spoken by the guy with date dyslexia. She responded with, “no it’s not.”
I had been concerned with the relentless weather reporting of inches and inches and maybe feet of snowfall predicted for the southwestern part of Ohio. I was worried about the second booster shot and making sure she was there to get it. I help out part time at a local community college and had already forewarned them that this booster appointment was going to affect my availability this week. As I walked up behind her to view the map of the month she and I both realized that she was tuned into the correct week after all and I had mentally moved her booster appointment up by a week.
I laughed at myself. Today she has both oars in the water. And my dyslexia was still active.
For me as a care giver to Cheryl, it is a stresser. Perhaps I need to lighten up and realize that I signed up for text message alerts about appointments. All would be well with the date dyslexic disability.
Sometimes with Parkinson’s the caregiver becomes the caregivee.
Cheryl keeps old cards as did her mother. We have had a long standing tradition of keeping old greeting cards in our home. Cheryl has kept cards for years. In the past couple of decades it became fashionable to send Christmas card – favorite family photo combination cards. These are especially precious.
Reconnecting by reading old cards
Parkinson’s slowly robs many of those afflicted of the ability to make new memories. Not all who have Parkinson’s disease (PD)(parkies) loose their short term memory but Cheryl is in that group. This seems to be related to her organisational function as well. For her it is comforting to read old cards and think about those people and their families. If there is an annual letter she will read it to me and reminisce.
Cheryl brought the cards from her mother’s apartment after she died. When Elaine passed away from this life a couple years ago these cards along with other mementos and photographs entered our condo. Throughout the past couple years Cheryl has organised, reminisced and rearranged these. They are a comfort. Thinking about others and remembrance is her favorite pastime.
I am simply happy that it gives her pleasure and peace. The deterioration of her mental abilities is frustrating to her. Bit by bit she is robbed of her independence and the cruelty of the disease is the fact that she is aware of the deterioration.
It has been said before – Parkinson’s sucks. In this case it sucks greatly.
Most little things are not important to care about. Our niece, Natalie, who cleans for us once said you are neat people in response to a comment from Cheryl about how quick and efficient she is at cleaning our place. She is right about that Cheryl and I are neat people generally. Clutter of newspapers and magazines will appear during the week but by weekend they are in the recycle bin. I get up and make the bed every day. While I am cooking dinner which is something I find myself doing more and more often these days, I put things in the dishwasher as I complete a task. We put the dishes in the dishwasher right after using them.
I’m not big on dusting which is why I hired Natalie to do that for me but since she has been dusting and cleaning every couple weeks, I have spent time spiffing up my office. Lately I have noticed a slight changes here and there with Cheryl’s behavior about neatness. It seems to be another sign of the degradation of mind caused by the Parkinson’s disease. Something else for the caregiver to do.
The inconsistency of PD is often confusing to me and always frustrating for Cheryl. I have mentioned this before. Paul McCartney has a new album out and on it a song titled “Seize the Day”. Absolutely one should seize the day but often with a parkie one must seize the moment. Her day might be disconnected from reality one moment and acutely aware twenty minutes later.
Mail… junk mail
As one gets older the junk mail increases. At least that is my perception. Cheryl used to be able to discriminate junk mail advertising and new credit card offers without opening the envelope. These days each envelope is opened and ruminated over. I think that’s how the Readers Digest started to get delivered. She may have asked me in a weak moment – Do you like Readers Digest? The subscription has been renewed until 2025 or so. Oh well. It was cheap.
Perpetual Christmas card list
Finally it is the end of an excruciating three weeks of getting the Christmas card list in order and sending them out. Cheryl has been looking at printing out and re-looking at the list of addresses she has from 2018, 2019 and edits from this year. This is all made so much harder by the fact that the original list of addresses is kept in an Access database which makes little sense to me. The list itself is a couple names short of 100. Both Aunt Alberta the last of my father’s core family and Aunt Ruth the last of my mother’s core family have passed away in the past twelve or thirteen months. Cheryl’s sister Janice is also gone, as is my brother Bill. Things need to be adjusted.
This exercise is more than just making sure that the address list is accurate. It is a time to think about those folks. Maybe a letter is needed for the card. Maybe a phone call is needed to get current. To me it’s about the list. To Cheryl it is more than that. The sewing machine becomes desk to finish off the last 30 or so cards that require extra thought. Lots of distractions jump in the way of sorting through these last cards.
Is this one of those “Aha” moments that a Facebook friend talks about? Aha! She is not able to focus her thoughts long enough to ask for help. When she asks for aid, it is very hard to understand when I must not push back when she wants to do it differently. I was not able to accept micromanagement in my working career either. This is frustrating. There are four more addresses to go.
We wrote a generic message to those who were left to go. We did this in the car riding to visit my son yesterday. Today when I asked her for the notes she took so I could write it up, she did not know what I was talking about. I had to be very specific in my discussion. But we got there. This is the note:
I have written this short note to everyone on my Christmas card list. My Parkinson’s disease is making typing and writing more difficult as time progresses. So, even though I would like to write a longer note, I cannot do it. I do want to find out how everyone is doing this year, so, if you are interested please send a text message to 5——–0 or email to me@Gmail.com and Paul will set up a Zoom meeting to keep in touch.
Thanks to you all and have a very Merry Christmas!
printed 6 to a page
I probably spend too much time trying to understand why I am angry (at myself) and frustrated (with myself) about a stupid list of addresses. I printed the labels – weeks ago. I just went in to check on the last four. She is handwriting an address for a fifth one to someone not on the list at all. Carpe Diem…
In a Facebook Parkinson’s disease caregiver’s group – a person asked in a posting if anyone else got driven crazy with questions. I am not. I wish I was. Occasionally she will wander down a rabbit hole and come out the other side anxious about loosing a piece of information, email draft, telephone number or address.
What day is this? Is Scott going with us? What do you think Jan wants on her pizza? Are we staying here or can we go home? Did that guy bring my pills yet? … I do get these sorts of questions.
There is very little straight line activity in Cheryl’s world. Her world has many distractions along the way.
I have read and re-read this several times. I am whining but there it is – a couple weeks in the life of a PD caregiver. It certainly is an odd disease. And it sucks!
This particular image has nothing whatever to do with anything I have written here but amusement parks used to have photo booths in them. Remember photo booths?
There is no value to looking backward in time. It is, however, enjoyable to reminisce about days gone by.
This morning she says to me, “Are we ever going home?” … in an angry tone.
It is kind of an odd conversation but more common conversation to have in the morning. Because she seems to be in a different place in her head, even though she can see all of her possessions and her earrings and her clothes et cetera nearby.
It’s just really, really interesting and disturbing. I am unsure of how to react sometimes and what to do about it. This morning I did pretty much nothing and told her that we were in fact home. This is where we slept last night.
Then I asked her if she needed my help find a shirt or anything like that to put on and that seemed to deflect her mind. AHA – so maybe in the future. What I will do is look for those opportunities to answer her question and then move on to a new topic because she doesn’t seem to get lost when I change direction. She doesn’t insist on talking about where we live and why we are there and etc. Poof! She looks for a shirt.
In the past few weeks we have had conversations about dreams, Jan and furniture. She has a different reality – which is probably the wrong way to say it – sometimes in the evening, sometimes in the morning. It is difficult for me to ignore the fact that she perceives something different than I do. My natural tendency is to correct her perception. (What can I say – I am male. It is built into my jeans. Yep – purposeful use of the homonym.)
I guess we are creeping toward the non-benign form of Parkinson’s disease. Sadly.
I have told her many times that I will stay close by to help guide. She seems to understand for now.
Some days it is hard to find any humor. We use to tease each other. Now she does not understand and thinks I am being mean.
As we travel this Parkinson’s journey the engineer in me is hunting for a fix for various things that arise. Lately the sometimes appearance of “Sundowner Syndrome” (SS) has me hunting for information and hoping for a solution. This Web MD article has some useful tips about how combat Lewy body dementia which can be a late stage Parkinson symptom. We do many of the suggested things such as, physical exercise, increased lighting and redirecting. Some actually seem to help.
Many if not most PD patients have trouble sleeping. I think Cheryl may be in the “most” category. These are just perceptions on my part but it seems she has about a three day cycle. On the third day she sleeps well at night. Poor sleep seems to contribute to SS.
Caregiver and sleep
The role of caregiver is a tiring one. One can spend much of the day assessing mood, movement, confusion and cognition. In the background of my thoughts is a constant “what am I missing” anxiety. In most cases it is a misplaced anxiety because I have become very good at ignoring my own needs and thinking ahead for Cheryl. — Oh, wait… maybe I forgot my own needs?
Recently I began to think seriously about what I need to stay healthy both physically and mentally. In the summer and warm months I enjoy riding my bicycle around. It is a love left over from my childhood. When the kids where teenage I took it up again for a few years. About three years ago I did it once again. It allows me to empty my head. I listen to a book or podcast while riding and pretty soon a couple hours are gone and I have given no thought to Cheryl and PD. That is until this year, the year of the pandemic and the year of fear and misinformation.
It has not happened for a some time but approximately 3 years ago and about two years ago Cheryl had a bad episode with fatigue and meds. I took her to the hospital the first time and the fire department took her to the hospital the second time. Both cases where less than satisfactory experiences. Hospitals are not set up to deal with Parkinson’s patients. PD patients have very special medication needs. They have very specific medication needs. This year of pandemic quarantine and isolation and the free flowing misinformation and social media idiocy, whenever I rode my bike around my favorite path I was often worried about Cheryl. I was unable to let go and empty my head. I kept track of time. It was exercise and not relaxation. I became totally focused on keeping her out of any sort of hospital setting and as a result I was unable to dissociate from that thought train.
Even caregivers need proper sleep. On those days previous that I had ridden my favorite route without any thought of Cheryl and her well-being, I slept well. That total relaxation and refresh seems missing to me. I have asked my niece and friends if they would be willing to sit with Cheryl while I disappear for a bit of time. Time that I have come to think of as do-nothing time. I am developing a network of care for her and me.
Mindfulness and resting conscience
It is not sleep but a relaxation technique. Many folks are able to meditate and pray and give their conscience state to something else.
None of those prayers written in the Baltimore Catechism do it for me nor do hands pointing up icons give me peace of mind. I empty my head as best I can and think about good times past and try to not dwell on those and long for their return. I try to empty my head of distracting thoughts about the future which tend to go toward death and wondering what that is like. I try to listen to my heartbeat and let go of anxiety about Cheryl’s care and stay in the present for her — not dwell on what unknowns may be brought by the future.
When I am able to do this the day looks fine.
Foggy or bright? — each morning I get up and attempt to discover how Cheryl is doing that day. Last evening for example we had dinner with our friend Jane who joined us for spaghetti and conversation. Towards the end Cheryl felt like she had to lay down and rest. Jane helped me clean up the dishes and she returned to her home across the hallway. When Cheryl returned her view of reality was confused. She wanted to know if we were ever going to return to “that other place.” We had a long conversation about where we live. It is as though she perceives two realities. She knows where we live but she wonders why we do not ever go home.
We later played Scrabble for a diversion and she went to bed. In the morning she seemed to have no memory of any of that confusion from the previous evening.
I get anxious when she ignores things that I want her to do so that she can get a good night’s sleep. And then I remember that I may not know all the answers. I take a deep breath and try to help her move slowly toward the bedroom at night.
The sun-downers thing that seems to be developing is different at each presentation. Sometimes it manifests as an urgent need to complete some task and mentally she is unable to finish – which makes her anxious – which makes her try harder – which makes her anxious – which makes her frustrated – and so on with a mental state that is almost manic. This may keep going even if I manage to direct her into bed. Her mind does not easily let go of the circular task/completion anxiety loop.
It made me think of Randy Newman’s song from Toy Story. I recently heard it on some news program.
You’ve got a friend in me You’ve got a friend in me When the road looks rough ahead And you’re miles and miles from your nice warm bed You just remember what your old pal said Boy, you’ve got a friend in me Yeah, you’ve got a friend in me
You’ve got a friend in me You’ve got a friend in me You got troubles, and I got ’em too There isn’t anything I wouldn’t do for you We stick together and we see it through ‘Cause you’ve got a friend in me You’ve got a friend in me
Some other folks might be a little bit smarter than I am Bigger and stronger too, maybe But none of them will ever love you the way I do It’s me and you, boy
And as the years go by Our friendship will never die You’re gonna see it’s our destiny You’ve got a friend in me You’ve got a friend in me You’ve got a friend in me
– Randy Newman, Toy Story
She will always be my friend. I just want to be hers and give her a smooth path.