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.
I originally wrote most of this in December of 2021. The lessons I learned and techniques I developed for communicating with my wife who was dealing with Parkinson disease and associated dementia are applicable today. The lessons of life are illusory and fade if not maintained.
I am learning things about myself from Debbie that I was only beginning to learn from Cheryl and taking care of her at the end of her life. Dementia is a misunderstanding between the brain and it surroundings and the sensors it uses to detect the environment. An oversimplification to say the least but a miscommunication certainly. Missed communication is at the heart of any conflict or dispute.
Lessons from making cookies
December, 2021: Cheryl’s Cookies (Not the Commercial Venture)…
Living with a parkie (person suffering from Parkinson’s disease) makes me alert to new information when it comes up. That being said I do not always recognize my new task nor do I always recognize the information as new. This is about becoming a master cookie maker on the fly. I was not completely inept. I make bread often.
Executive function and loss of it…
Dementia occurs in about 50% of Parkinson’s sufferers who have had it for some time. Mild cognitive impairment often shows up first, followed by hallucinations, delusions, misunderstanding, memory loss and inability to follow simple directions. It is disheartening. Some behaviors are side effects of medications. Some come with build up of unpronounceable proteins in the brain. No matter the source, the behavior can be disheartening and annoying from a care partner perspective because the person you once knew is physically there and mentally not completely there. From a care partner’s perspective it seems that the medical community does not forewarn anyone about this aspect of the disease.
I am a retired engineer and have an innate curiosity about everything around me. Cooking, baking, bread making and all things requiring an oven have a particular fascination. There is practical chemistry in cooking both with the ingredients and the people cooking them. To the question, why do it that way? Near the end, my wife’s reaction often was anger to some perceived slight or merely to the wording of it. (She is the parkie in this story but that may have little to do with it. I caulked most of these reactions to her PD and her mental state at the time.)
It is an engineer’s question. It starts with me. Words and question structure are important factors. Engineers always want to ask why something is done some way or simply is some way. Why often sounds like a challenge, even to other engineers, if it is not asked properly. Tenor is detected in tone of voice both in the sound we make with vocal chords and inside our own head. Cognitive impairment interferes with interpretation of subtleties of tenor and tone of voice.
How to do…
December, 2021: Our latest challenge to our marital bliss is Christmas cookies. Baking is a hobby and a passion to me. I like to think I have perfected my meager talent at making breads of various types and shapes. I am proud of that but lately I have pushing into cakes and pies. The pandemic pandemonium gets to us all in various ways.
My perception of making cookies is one of a trivial exercise in baking. That is an incorrect perspective but one that I have internalized. December is cookie making time. Cheryl is helping me or I am helping her that is unclear in this reminisce but her Parkinson is affecting her more and more. Two cooks in the kitchen is a recipe for a challenge to peaceful coexistence. Two bakers near an oven enables battle lines to be established and defended with vigor. Starting a question with why is akin to removing one’s glove and casting it upon the dueling ground. [Emoji (:-)] Cheryl has made perhaps a giga-dozen (I just made up that word) of cookies. I have made none. What can I say to redeem myself? Engineers ask why a lot and in this exercise I learn to find a more agreeable way to get her to tell me what she knows.
The lead-in; I do not understand, why do… seems to temper the why. Small children ask why a lot until finally the because-I-say-so comes out.
Where to start…
To a skilled cookie baker the recipe is merely a guide, a refresher, a list that says these get lemon zest. Interestingly, that is much like how I view a new bread recipe. I am on familiar territory. (He thought to himself with arrogance.)
Not so fast apprentice! Nearby there is a master cookie baker. Do not question the master’s skill at her craft with disdainful utterances such as, why and how come? All will be revealed. But also keep an eye on the recipe and make answers such as, yes, we have put that in the mix and suggestions, such as, shall I add the butter?
Sometimes with creeping dementia ingredients are forgotten. Sometimes without that factor ingredients are forgotten. Try to be kind and remember that no one got up in the morning thinking, how can I mess with his mind today? Most importantly, do not raise your voice two octaves, that is a dead giveaway to your ignorance.
How does one check for doneness? (It is common sense!) Look at them. (the “fool” is left unsaid.) They will look right. What is right? (and on and on and on…) Cooking is a process. It is learned by doing. Life is random. It is learned by experience.
The 3C method – Cut out the Crap in the Conversation…
To a person standing nearby this conversation sounds rude. It sounds like one person is giving another orders and it can be that way. If done with kindness in the communicator’s heart and with understanding that a Parkinson’s patient also may be dealing with confusion issues, it is neither rude nor demeaning in any way. Often a person experiencing Parkinson’s cannot or does not get the implication or inference. Be clear. Have kindness in your voice when speaking. No teasing.
When tasting the cookies later after they have cooled, do not say, “YOU FORGOT THE SALT!” Instead say “These seem off somehow. Did we forget an ingredient?” Gentle discussion allows for thoughtful assessment rather than confrontational reaction.
The onus is on the care partner not the parkie to be patient, kind and clear. Be aware, care partner, that this is hard to do because you remember how your partner/spouse/parent/friend was before. (Good natured teasing may be misinterpreted. Be certain that your partner is not confused.) You too can be unaware of how they are now. The Parkinson’s patient may become sad or angry. Be persistent if you as care partner are very concerned about safety. Add some love to the conversation if you think you are not getting through the confusion. Strive to not become frustrated and raise your voice (two octaves).
We did wind up with our first battle batch of cookies. Although they were a motley crew, they tasted fine.
This episode came to me as I was thinking about other experiences that have cropped up in my new relationship with Debbie and I am getting to know her family and friends. Patience, kindness and clearness are useful aspects of communication with anyone, especially someone you care for deeply. Debbie has told me several times that she does not always know when I am teasing her. Perhaps I should not do that at all. The ability to tease someone comes with trust and love and familiarity. Perhaps I should remember that I do not know what I do not know and err on the side of kindness and ease, not tease.
Everyday is a winding road. I get a little bit closer. – Sheryl Crow (Good poem/song – read the lyrics)
Today I came to visit and you are sleeping again. So, I think that I will sit with you for a bit in your room and write you this letter.
Yesterday was a busy day for you. The Hospice aide came to give you a bath, I came after lunch and we went outside to the garden to sit in the sun, Allison came to do your hair ( it looks good) and Mike came late afternoon to check your vitals and see how you are doing. You were busy with lots of stuff.
Today it looks like you’re worn out.
When I talked to you, you did not respond. I kissed you on the cheek and you did not stir. So, my conclusion is that you are very tired and I will not disturb you.
Robert Thomas called the other day. He is going to come and visit in early May. Our plan (his mostly) is to ride bikes a lot and see where we get to. I have ridden my bike a couple of times this week when the weather was good. Once around the loop in Winton to see if I could deal with the helmet and the dog collar around my neck. It seems okay but the neck collar pushes the helmet up in back so that it is hard to see forward. It is easy to see my front tire. Yesterday I went down to Lunken to see how high the river was. It has covered the bike path under the Beechmont bridge. The fence is covered up so it must be six or seven feet deep under the bridge.
This neck stretcher really restricts movement of my head. In the short periods when it is off and I gently turn my head, it hurts to turn it very far to the side. I think that when I get it off in a couple of weeks I will be glad to restart my chair yoga and balance exercises. I am looking forward to that.
Billie and Fran and I are going to meet for lunch next week. You might remember them from when I worked in Sharonville. Anyway we are Facebook friends and thought it would be good to have lunch together one day. Billie has had some recent health issues and so has her husband. I am interested to know if Fran is still doing her flea market thing and what else she’s been up to in her life.
I have not planned any activity today. I was watching the weather all week and today was supposed to be raining, overcast and cool. My thought was to sit with you, so I am doing that. You however are sound asleep. They must have gotten you cleaned up and dressed this morning. Did you tell Jennifer that you were not interested in getting up today when she asked you? (My guess is yes. )
I have been here for more than an hour and it appears that you are not going to awaken. I will let you rest and come back later.
As I left the Harbor I talked to Tonya, the nurse supervisor. She told me that you did not take your medication today and that you were breathing oddly earlier and she had called Mike the hospice nurse. He will come in a little bit to check you.
I love you and missed your company today. I had hoped to sit and hold hands like we did yesterday. The sun is supposed to be back tomorrow, although, it will be a bit cooler. We can still go outside tomorrow. I will put your brown jacket on you to go into the garden.
When she tried to eat her fidget beads I reacted not with excitement but love When she poured her water in her lap I came to her aid with love and caring When she talks so soft I cannot hear I ask her to use her outside voice And yell with all her might
She replied I am. I took her fidget beads with me today I realized the meaning of out of sight, out of mind in her case totally I got a towel to dry her pants and sleeve I asked her if I could help her change clothes No, she said. I did not push. And I am learning to read lips.
Today she tried to eat her fidget beads To her these resemble candy. Touch is more important than being right Gentle touch and just being
(A beginning of a new life and the ending of an old one.)
This holiday season marks the beginning of a new phase in our life. “We’re in this love together” popped up on the Spotify playlist as I started to write my thoughts. Cheryl and I are in this love together and forever.
For the past few weeks I have been organizing, sorting and cleaning our living space. I have gotten rid of multiple copies of old emails and address lists. I have meticulously gone through rubber banded stacks of old Christmas cards and retrieved pictures, snapshots and photographs. The work has been tiring and emotionally draining. Old photos bring back fond memories and nostalgic remembrances of good times. And some old photos do not. Those photographs distract me into detective mode. (Who is that person? Why were we there?) Even with those questions hovering in the background of my mind I think, look how young we were once. How did we get here?
This year has been a tumultuous one with both love and mental chaos, physical challenges, extra equipment and extra medical help as Cheryl’s Parkinson and dementia seemed to overwhelm her and me. Her good days became fewer. Now, today, Thursday, December 28th, my sister Laura’s birthday, Cheryl is staying in the Harbor memory care section of Bridgeway Pointe. How we got here is a story about the agonizingly slow progression of Parkinson’s disease and the mental toll it takes on many of its victims. It is also a story of how it slowly came to me that although I thought my love could conquer all, there is strong evidence that extra hands and expertise were needed. It is a story for another day.
This holiday period is very different. About two weeks before the Thanksgiving Day holiday Cheryl moved into the Harbor. A week and a half later as I took her to David’s house for Thanksgiving dinner, she was resistant to getting out of Bridgeway Pointe to go to David’s house. After that experience I told the kids and extended family that any more celebrations we had to take to Cheryl. We should not expect her to go to them. (It is too hard for her and for her husband.) Cheryl had settled into Bridgeway Pointe in a fashion that I had not expected.
The rest of the holiday dinners and celebrations I attended without Cheryl by my side. I visit Cheryl every day. The kids visit on many days. Her brothers and sisters and friends visit when they can. It is different. I do not know what I was expecting or what I want it to be, all that I know is, that it is different. There is something missing for me at the celebrations. I think that something is Cheryl’s spirit, her smile, her glee watching the kids open presents, catching up on family or simply delight in the moment. “Don’t it always seem to go that you don’t know what you got ‘til it’s gone?” – these words are from an old song.
From here at this moment in time we begin anew. I do not know what our new life will bring but it will be better for us.
Cheryl is safe in her room a Bridgeway Pointe and I am cleaning up and sorting through papers in her office. She has collected vast piles of birthday cards, Christmas cards, notes, emails and other writings. She has put these together in random collections of paper that, at the time in her thinking, belonged together. (Punding is the term used by the Swiss.) This collection of items is her version of it.
One of the thoughts that comes through to me is a background fear of losing her memory and remembrances of her life. Some of her notes to herself are frantic in her attempt to categorize and save memories.
In the following email she is very succinct in her experience. I uncovered it while sorting. At the time she was taking amantadine. It was prescribed to help deal with the dyskinesias (rapid uncontrolled movements). After a failed trip with lifelong friends Cheryl wrote this letter to explain. It was, I think, the first time she felt the need to explain things to others. Here is her email to Cathy:
Wed, Sep 5, 2018, 10:04 PM to Catherine
Cathy and Paul,
I hope you’re having a good time on Mackinac Island. The tour in which Paul and I participated was very informative and fun. We learned a lot about the island, the people who live there all year round, the horses and how they are cared for, the history of the island, what happens during the winter when the horses are moved to Michigan’s Upper Peninsula, and much more. The Harbor View Inn is a very comfortable hotel, the food is always good and there is plenty of it. This is why we were so excited about sharing this trip with you.
I want to explain to you what happened to me last weekend. Every 3 months, I have an appointment with either my neurologist or with his nurse practitioner. Last Tuesday, August 28, my appointment was with the nurse practitioner. During the past 10 months or so I have been taking a new medication that was prescribed for me by the nurse and doctor. It is a drug that is supposed to keep me from swaying side-to-side. By summer I was taking this drug 3 times a day in addition to my prescriptions of Sinemet (I’ve been taking Sinemet for the past 8 years ever since I was diagnosed with Parkinson’s Disease).
About a month ago, I began to experience hallucinations. They weren’t too bothersome. They usually manifested themselves as vivid, sometimes bad dreams. By the time I met with the nurse practitioner (Maureen) last week, these hallucinations were becoming a little more than dreams. I asked if I should begin to wean myself from this new drug. Maureen agreed that I should begin to do that, and we worked out a schedule … and I began to work on eliminating that drug the next day. For a week, I was to stop taking the 7am dose of the drug… I didn’t notice any bad reactions… I still had the hallucinations but they hadn’t become any worse. They were just an annoyance.
On Saturday, Paul and I had a nice drive from home to Lansing, Michigan. The weather was nice. We stopped for lunch in a nice restaurant in Van Wert, Ohio. Then we drove on to Lansing, checking into our hotel around 5pm. We found a nice Bravo restaurant near the hotel, and we had a delicious Italian dinner. We watched TV at the hotel for a while. As I was organizing my things and getting ready for bed, I began seeing things that weren’t really there. There were bed pillows piled on the bed the way they usually are… but I saw what looked like a little child peeking out from under the pillows. I knew this was an illusion, but it persisted. Paul and I talked about it, and Paul said that we should just go to bed and everything would be ok. Based on what had been happening in previous weeks, I thought he was probably right. So we went to bed. Then what I called the “hallucinations from hell” began. The little child kept appearing in and around the bed with the pillows continuing to move. What appeared to be a man wearing a long piece of fabric (I would not call it a cape, but more like a blanket) was “flying” around the ceiling. We tried turning out the lights… nothing changed… things were still moving around. Paul did not see any of this, but he believed me. Finally his solution was for me to close my eyes, since this was all apparently in my head. I tried that for a while, then became frustrated with the whole situation. I got up and walked out of the room in my pajamas. As soon as I heard the door to the room close behind me, I realized that I did not have the room key. Fortunately, Paul heard me and went right to the door and let me back in. But what I had just done frightened both of us. After that I closed my eyes and tried to sleep, repeatedly telling myself that none of this was real, but I wasn’t very convincing. Somehow we made it through that night, but with very little sleep.
When Sunday morning finally arrived, we found a nice restaurant close by and had some breakfast. We talked about the trip and what had happened Saturday night, and we decided that we could not stay and go on the tour. We had never experienced anything like that before, but decided that we did not want to expose anyone else to our troubles. We felt it would be better for us to leave… that would ensure that you would have a good time.
We both think it was a good decision because I continued to have these horrible hallucinations for a couple more nights. Since it was a holiday weekend, I had a difficult time getting in touch with my neurologist’s office. I sent a couple of emails, asking for assistance. Of course, it was not an emergency. I was certain that it was my body’s reaction to withdrawing the medication. I had not thought I would have such a violent reaction. On the other hand, I did not want to increase the dosage again – that would just cause me more problems. So we toughed it out. Each day and night things went a little better. At home at night, the ceiling fan in our bedroom would appear to be falling toward me and the windows would appear to be moving toward our bed… mind you, they never came all the way to the bed, but it was still unnerving. There were people and children moving around in our bedroom and in the living room (this went on day and night). In our master bathroom, which is of course right off the bedroom, a couple of the hand towels were turned into a puppy… I was very surprised when I saw that!
Early yesterday the nurse practitioner contacted me, answering my email messages to her. I had asked if it would be a good idea for me to speed up my withdrawal from this drug, or if it would only cause me more problems. She answered that she did not think my reaction could be much worse. So I should stop taking it all together, and contact her with frequent updates about my condition.
This seems to be working. I’m not out of the woods yet, but I’m definitely feeling better. And the hallucinations are almost gone (I’m almost afraid to say that). But I think they are no longer a problem.
Again, I’m very sorry that Paul and I could not go on the tour with you, but I think now you understand why. We will go on another trip together again sometime soon.. maybe in the spring or summer.
I thank you for your prayers.
Take care.
Love,
Cheryl
This is the best and clearest description she has ever given me of her hallucinatory apparitions. She still sees people, things, children and bugs but less so and the visions are not terrifying to her as they were on this trip.
To me, it is a gift to understand what she has been going through in her mind. This is a love story that is not finished. I think that many of her visions are of people she knows or has known. Much like the theme of the TV show “Ghosts” she may be able to see beyond this world. (Why not?)
You wrote in your WordPress pages once that you used to let Carlton sleep. My Cheryl has lately started sleeping more. It worries me because she is also eating less. Did you try to get him up? Much while he was sleeping away the day? Cheryl has a great deal of cognitive issues also and I am currently in the process of housing her in a memory care facility nearby. (Expensive!) I worry that she may not be with me much longer.
Paul
Dear Paul,
Even though we have never met, I feel like I know you because we have shared so much about our spouses. Thank you for reaching out to me about this. Sleeping more and eating less are signs of your Cheryl’s body shutting down. I’m not saying she will pass away this week or even this month, but these are signs. I did not try to wake him when he slept away the day. Maybe one part of the reason was that I could get so much more done while he slept, but by this time we had Hospice care at home, and the nurse advised me to just let him sleep. She said his body must need it.
For the last few months, he ate less and less. He was eating pureed foods mostly because of swallowing issues, but one day I realized he was eating only half of his normal amount. When I mentioned it to the nurse, she said that was normal for his decline. Most of our marriage he weighed about 200 pounds. When he passed away he weighed 110.
Here are some questions about the memory problems – do you worry she will wander away? Is it becoming too difficult to reason with her about things? Have the doctors mentioned considering Hospice care either at home or in a facility? Please forgive me if I’m being nosy, and don’t feel you have to answer.
Again, thanks for reaching out. I do understand.
Cheryl
Cheryl,
Thanks for getting back so quickly. So as I read the first part of your email I wept out loud. You merely confirmed what I think has been happening for some time now. A few months ago Cheryl told me that she did not think she would be around for her hairdresser appointment in late August. – I wrote about it.
Last week she stayed at a memory care place for a week of respite care while I visited my sister in Portland Oregon for a week. It was less than acceptable to me but that is a different story. There is an assisted living/more assisted living/memory care facility which we are familiar with about 1 1/2 miles from here. It is a part of University of Cincinnati Health System which is where most of her doctors are associated. Both of our mothers stayed at Bridgeway Pointe near the end of their lives. It is a place that cuts through all Cheryl’s mental fog. The kids and I discussed it on Wednesday night with her. In her small periods of lucidity she has indicated that she is okay with staying there.
It saddens me of course but I think she needs a higher level of constant care than I can give her. To answer your questions —
Here are some questions about the memory problems – do you worry she will wander away? — no not anymore. She does not move well enough to wander off. She did once about a year ago when she was more ambulatory.
Is it becoming too difficult to reason with her about things? – yes. She requires constant instruction about what’s next. She is able to physically put on her clothes but she does better if someone is telling her what to do next. I am worried that she may have a UTI from the respite care week because they never got her out of her transfer chair to walk or any other little bit of exercise.
Have the doctors mentioned considering Hospice care either at home or in a facility? – She began seeing a new doctor in addition to her MDS at UC Health – referred to by him – Her new doc has a palliative care clinic. Her main thrust so far is to get her constipation under control. And they have been adjusting her “mood meds” – Cheryl takes quetiapine and sertraline (Seraquel and Zoloft)
Sad and scary stuff watching her not do things that would help because she is not mentally capable anymore. At last weigh in she was 117. She used to be more fluffier 165-170. Writing that just made me cry again…. sorry.
Paul
It is sad. You’re right. No one can say anything to change that. You will be sad without her because she has been part of your life for a very long time. You have history together!
The best part of this story is your faith in God. You both believe that God is with you, and I pray that He will comfort you right now and in the days to come.
You’re doing the best thing for Cheryl and for yourself and for your family. I’m so glad you have kept them in the decision-making process. That is the best way to go.
Call whenever you need to vent or ask a question or just talk about something totally different. I’m praying for you all!
Cheryl
999-999-9999
Cheryl,
I am glad you think I have faith in God. Some days I am not so sure about that. Some days I am certain that His plan sucks and hope He forgives me for disagreeing with His design. 🙂 But right now regardless of any belief structure I am certain that my purpose was and is to take care of my Cheryl.
We met on a blue moon in August of 1966 and we have been together since. It has been a remarkably wonderful journey except maybe for the last couple years.
When we were kids the nuns talked about going to purgatory if you were not quite pure enough for heaven. Somewhere in my adult life I decided this is purgatory and depending on how you do with the various tests of life determines which part of heaven is yours forever. I am hoping for the full service sitting area where Cheryl and I can have a conversation and maybe a glass of wine with some great bruschetta.
We both have a wonderful memory of a long walk around Niagara Falls many years ago on a late summer trip to NY. Coming back to the hotel we walked by this little cafe and we stopped in for a snack and glass of wine at about 4 in the afternoon. I ordered bruschetta to snack on. We were probably both hungry but it was the best bruschetta ever. None since has measured up. 🙂
She is awake now at 2:30 in the afternoon. I may call you sometime in the future to talk. Put my number in your contacts so you will know it is not “Scam Likely” calling.
Paul
888-888-8888
On the days when you are not so sure, I would say, “Welcome to the club, my friend.” I don’t believe God is bothered, upset, or discouraged by our doubts. Instead, I believe He welcomes our honesty.
Prayers and hugs from Georgia!
Cheryl
Cheryl,
Many things are tested but my spirituality, such as it is, is solid. My love for Cheryl is also. (The plan sucks. 🙂 ) I thought you were a Michigan-er. Although I do not know why I think that.
Yesterday when I was down a bit and you were helping me with emails, I eventually crushed Cheryl’s morning pills and put them in some vanilla pudding. At 1 pm I got her to sit up for a bit and I was able to give her the first dose of meds for the day. I got her to lay down again and about an hour later she was trying to get up on her own when I went to check on her at 2:30 or so. I was certain that she would not sleep at her usual time of 10:00 PM but I had to do some maneuvering to get her to stay up that late. She slept the night through – getting up once as a part of a dream that she thought someone was knocking on the door. (I opened the door and closed it announcing, “There’s no one there.” She went back to sleep. 🙂
This morning I crushed her meds again but got her to sit up in her usual 9:30-10 AM wake up slot and fed her the vanilla pudding meds. She was up at 11 AM today and now she is in bed again. In between we went to visit my daughter to celebrate our granddaughter’s 18th birthday. Audrey wants to go to the Air Force Academy in Colorado. She knows how to fly a plane already. She wants to drive them for the Air Force.
I am anxious to see if this trick works again tomorrow. It is getting harder to get her to wake up in the morning. I am going to just keep plugging away and see where this all goes.
Carpe Diem,
Paul
On Tue, Nov 14, 2023, 7:00 AM Cheryl Hughes wrote:
Good morning Paul,
Today I am praying for you often, trusting that God is with you, as He has been and is still with me.
A former student of mine is a pastor, and he sends a daily devotion to my email each morning. Here is the part that applies to you today:
Good Morning!
The situation you are facing didn’t surprise God. The problem that you didn’t see coming did not knock God off of His Throne. Your Heavenly Father loves you and He will take care of you. I love how the AMPC translates Psalm 37:23. It says, “The steps of a [good] man are directed and established by the Lord when He delights in his way [and He busies Himself with his every step].”
God is ordering, directing, establishing, and arranging your steps. When life throws you a curveball, know that God already has a plan for your victory. When Satan launches a sneak attack, know that God has already planned your deliverance. When you know God’s character and you have seen Him help you before, you can live at rest no matter the circumstances around you. You are able to do this because you have seen God come through for you before and you know if He did it once, He can do it again.
Today, rest in the fact knowing that your steps are ordered by the Lord. Know that God hasn’t brought you this far to leave you. Always remember that God loves you, He cares for you, and He will never leave you nor forsake you. As Psalm 37:23 shares, God is involved in every single step. Trust Him and follow His leading today. You’ll be glad that you did!
My prayer for you and Cheryl is for God’s peace to envelope you both today.
Hugs and prayers,
Cheryl H
Cheryl,
Thanks for your note this morning. It meant a great deal to me. I suppose I did not think that getting Cheryl into a place that can care for her full time would make me so weak in the knees when I got to the point of taking her there and letting go. I feel lost and rudderless tonight.
I wish I had your trust in a higher power. The last part of Max Ehrmann’s prose poem – Desiderata speaks to me like your pastor’s essay. — And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.
I do strive to be happy but I really miss her. She has been mostly gone for some time. But once in a while – early this morning was one – she will say something that helps me to know she is still in there and our love is still strong. This morning she told me she loved me. Not as a response to me saying that to her. She said I should take care of myself too.
Thanks for your prayers. It sometimes seems lonely. Your words meant a lot to me this morning.
Paul
Thanks for your note this morning.
I am looking forward to seeing how Cheryl is doing today.
Paul
On Wed, Nov 15, 2023, 7:06 AM Cheryl Hughes wrote:
Good morning Paul,
You made it through your first night. Today you will begin a new normalcy, visiting Cheryl and then coming home again. I can only imagine the wide range of emotions you will experience, and again I will pray for peace for you both. Even if it takes time, I pray that soon you will both settle into the new routine.
I understand loneliness. Carlton and I were a team. We sang together in churches and played piano and organ duets together for many years, but then Parkinson’s arrived and for the last 23 years all of that dissolved. I still mourn that loss. We are allowed to mourn the loss of those partnerships, even while they are still on this earth. We feel deeply. We have regrets, but we must push those aside and focus on the beautiful experiences we have had with our spouses.
Thanks for sharing the Ehrmann poem. It is all natural, but it feels odd to us because we have not been in this situation before.
So, I think we should accept however all of this makes us feel, happy or sad, and not apologize for it. Tears are flowing as I write this. The truth is that I also pray for personal peace as well.
May God direct our steps and thoughts and emotions and decisions today, and give us peace.
Hugs across the miles,
Cheryl
Thanks for your note this morning.
I am looking forward to seeing how Cheryl is doing today.
Paul
Cheryl,
It is a really hard transition.
Here is my question to you. Were you able to keep Carlton at home until he passed from this existence? If you detect a little self doubt, you are right in thinking that.
I know it has been too soon to tell how Cheryl will do at Bridgeway Pointe. I went to visit for a few hours this morning at BP. Her sister Nancy came to visit and stayed for about an hour and a half. She and her gentleman friend were going to lunch. I still have my little part time teaching gig at a local community college so I went there in the afternoon. A friend of Cheryl’s, Mary Jo, visited her in the afternoon and got there when they were finishing up lunch. I think Mary Jo was surprised at how much Cheryl had deteriorated in the four weeks since she had seen her last. Among other things Cheryl has a very soft voice as many parkies do. BP’s memory care section can become noisy as everyone wakes up and moves around. So, Mary Jo had a hard time hearing what Cheryl had to say.
After talking to Mary Jo on the phone afterward, I am torn between going to visit this evening and staying away until morning.
She has to have time to acclimate to the new environment. I have to have time to acclimate to mine.
I really wish we had to do neither.
Thanks for reading.
Paul
Thanks for the note Paul. I wondered how today had gone. I’m kind of surprised that BP doesn’t ask you to stay away for a couple days until she gets acclimated, but she may need that reassurance of knowing that you will be coming back. There is no right or wrong answer about how often or how much to visit. I think you have to figure it out for yourself. I did keep Carlton at home until he passed. It didn’t seem too hard, except for during the nights when he would wake me up three or four times. So yes, it was hard. But it was some thing I promised him I would do if I could, and I figured I could. We all have to figure it out for our own family and I think as you give this a try for a month a few weeks I don’t know how long. You will know if you made the right decision.
Sent from my iPhone (Cheryl)
Cheryl,
You have become my reporting entity whether you intended to be or not. It helps that I have someone to write to and think about the day. I hope you do not mind.
Today Cheryl was pretty good.
I looked at myself in the mirror this morning and said out loud – Boy you really could use a haircut. You look a little scraggly. 🙂 So I had some breakfast – Ham and pineapple and cheese omelet – I know but it seemed like a good idea at the time and it was not bad I just may not do it again. I made the bed. I decided that no matter what I was going to make the bed every morning. I found clothes and went in search of my car. I did not put it in the garage last night. — Something that I ALWAYS do. My head was elsewhere last night.
Getting into the car I glanced at the oil change sticker and thought – better get the oil changed while you are out and about. Haircut and then oil change! Off I went thinking out loud that Cheryl was fine until I got there – do some chores first then… It occurred to me that I could do whatever I want on any day so get used to it. And then I thought Cheryl could be one of those things and I cried for a bit while driving along to the barber shop. I know the barber pretty well and Dennis knew what I was doing with Cheryl. He did not ask and I did not tell him what was going on. – Men do not cry in the barber shop. It is a rule. 🙂
When I finally got to Bridgeway Pointe it was about an hour before lunch. Cheryl was sitting out in the common area with a few others watching “In the Heat of the Night” on MeTV. The love seat next to her lounge chair was empty so I sat on her left and asked how she was feeling. Good, she replied. So we sat together and watched the show. She tips over to her right side and somewhere along while watching I tipped her up a little bit and put my arm there so she could lean on me to hold herself up. It was a very special moment for me. She put her other hand on my wrist and we sat comforting each other for a long time.
I took a selfie – attached.
I left when they set up for lunch so that I could get some food and to go look for parts to fix her wheelchair. Her WC arms are adjustable and she has managed to disassemble the little buttons that allow the height to change. When I came back a couple of her friends from church were there visiting. I sat with Cheryl and them for a bit while Cheryl talked and then lost her conversational way and started thinking about what to do with my sweatshirt that I had taken off while futzing with her wheelchair. They both wrestled with their uncomfortableness for about an hour and then left.
I got Cheryl interested in walking around with her walker with me holding onto a gait belt and we did a little exercise with me saying left, right, left, right, left, right, watch out for that wheelchair that belongs to Deloris, left, right, etc. Three loops or so around the common area. I got her back into her transfer (wheel) chair and we rode around the building outside of the memory care wing. She was pooped.
It was a good day. I think I was calmer seeing how the staff helps/deals with patient issues. They are caring people. (or they were on their toes because I was there. – That’s not fair. Other family members are there too.)
Thanks for reading,
Paul
Cheryl,
I went over to Bridgeway Pointe about 10:30 or so today. My plan was to repair the arms on her wheelchair. She is constantly taking them apart by fidgeting with the adjusting mechanism that lets one slide the arm forward and raise and lower the arm. — It does not seem to matter how much you pay for a quality wheelchair, there is always some deficiency some where. 🙂
However Cheryl was asleep at eleven o’clock in the morning. She was sitting up in a recliner in the common area wearing her pajamas. She may have not slept well. That is the usual reason she sleeps late. And I may have messed up her sleep pattern by getting her to walk yesterday. I got her to walk a little today but she didn’t go nearly as far walking. She seemed to prefer sitting in her chair and moving it with her feet.
My son came over for a while after lunch and with his help we installed her TV on the wall mount that I got the maintenance folks at BP to install for me. That is working fine with the local cable provider (Spectrum) and even though she doesn’t watch TV much she often has it on for background. It was a good day once Cheryl was awake and the aides had dressed her. She ate nothing for lunch and the aides were very concerned about that as am I. I think I mentioned this to you once before but she eats very little and does not seem to be interested in it. She does not seem hungry. It is as though some of those circuits in her are broken.
Sense of smell, hunger pangs, bladder is full, all of those sorts of internal cues are not working so well anymore. They were not working so well when she was still home with me. I had hoped that she might eat some of the food they have there. It always smells and looks good to me. (But I have a sense of smell).
I am usually coming and going near mealtimes and the place smells like good food to me. I am sure it will get better. I pray to god it will get better.
On a lighter note I bought another TV for home since I took ours to mount on her wall. Now I can watch anything I want without fear of upsetting her. With Cheryl sitting in the living room in the evening I would look for something light or funny. You can only watch so many Hallmark movies…
One funny thing, just as David and I got there about 1:30, someone in the assisted living section had set off the fire alarm which sent everyone running around to see if it was an actually fire or if someone had merely dusted the sensor upstairs in #229. 🙂
Life today – thanks for reading,
Paul
Good morning Paul,
You are already feeling a new sense of rhythm in life. That is a good thing!
Thinking about Cheryl’s disinterest in eating, here are a few thoughts. In time she may eat a little more at BP when she settles in. Sometimes a particular staff member who connects with her might be able to coax her to eat.
However, if that doesn’t happen, it is a normal part of the shutting down of the systems of the body, and it is sometimes a natural part of leaving this earth. We don’t need to sugarcoat things because we both see the signs of the effects of the disease, right? Carlton ate less and less until one day I realized he was barely eating a tablespoon of mashed potatoes and saying he was full. He choked often, so I was pureeing all his food for the last 6-8 months.
I love how you are visiting her randomly and doing normal things while there. Keep up the good work. And I look forward to reading your “journal” each night.
Thursday morning I had tea with JoLynn, a dear friend whose husband has Parkinson’s, and we prayed for you and Cheryl. She reads my blog and knew of you there as Adjunct Wizard.
Have a great Saturday, my friend, and I am so thankful Cheryl has you!
Cheryl
Cheryl,
Cheryl ate two servings of fruit, half a pancake and a couple bites of sausage for breakfast. 🙂
That was the news when I showed up today. I brought some of the refrigerator pictures from home to stick on her fridge. I sat with her for a bit and then they served lunch so I headed home to feed myself. I could have stayed with her but I am saving that for next week and the weeks after. She seems adjusted to the place and interested in the other residents and their conversations.
Her next door neighbor is a retired lawyer Stan Chesley. You can Google him. I think he is dealing with Altzheimer’s. Cheryl worked for him long ago when she was working as a computer data analyst. She worked with her friend Maxine whose husband Sam went to high school with Stan. (Small world) Made smaller because in the afternoon – our daughter Anna and her kids and husband showed up for a visit. While we were there – Sam walked through the door to visit Stan. 🙂
This is where one writes – a good time was had by all. It was a good day. The evenings are less lonely if I have something to do. I am close to my goal of having the room ready for my sister Joyce when she appears on Monday.
Your book describes our situation — as you say it is the same but different.
Carpe Diem,
Paul
Cheryl,
Yesterday turned out to be way busier than expected. Sundays are supposed to be relaxing. I went to bed without writing.
On Friday when I visited in the afternoon I had asked Cheryl if she wanted a Coke. She said yes so I went to get it in her cup that she got from her brother with his “Torbeck’s Auto Service” logo on the side. It has a screw-on lid and a straw. Perfect for parkies. 🙂 Later when they started serving dinner I put it at her place at the table. I left for the evening and worked on turning her old office back into the second bedroom it was intended to be.
On Saturday when I looked for her cup it had disappeared into the dishwashing system – maybe never to come back. 😦
On Saturday night I texted her brother Dan and told him the story. He responded with I’ll bring her a new one. (yea!) We met up on Sunday morning and he brought two and some towels he gave away as advertising for his business. All was well. We talked for a bit. His wife Tari is in another hospital post-surgery to fix a problem with her spine. He did not stay long and went to sit with her. I sat with Cheryl until lunch, left to eat, came back later in the afternoon after having made most of my adjustments to the second bedroom. Cheryl seemed to be “out of it” in the afternoon but was content in the common area watching a series of “Men in Black” movies on the TV. I told her I was leaving to visit with Dan at the hospital and I would come back after dinner with ice cream.
I did that and when I came home I decided to fry some sausage for dinner and go back to Bridgeway Pointe. I was heating the skillet with Crisco in it and thought to go view my handy work with the second bedroom. The Crisco started smoking because I ignored it for too long. The condo fire alarms went off, then the building alarm went off. I ran around swearing to myself about ignoring the skillet. A few minutes later the fire department showed up. (A few years ago we had the building alarms replaced with ones that called the fire department.) We live in a small condo community.
After clearing out the smoke from everywhere and getting the fire alarms to be quiet, I went back to visit Cheryl. I stopped along the way to get Cherry Cordial ice cream. She was still eating when I got back. She had sweet potato pie for dessert. She ate little of her fried chicken but she did eat some, one broccoli flower, some potatoes. She ate all the dessert pie. 🙂 I put my ice cream in her little freezer for later. I left her in her bathroom sometime later after I helped her to got to the toilet and she argued with me about telling her what to do. (Sigh.) Jim – the nurse – called me later to say she had fallen in her bathroom (more likely she rolled out of her wheelchair reaching for something she saw on the floor and was trying to pick up.)
My condo smells like burnt vegetable oil today. I will pick up my sister at 5 pm this afternoon from the airport. We will probably have a glass or two of wine and laugh about it.
Carpe Diem,
Paul
Someone to talk to about what is going on is a good and helpful thing. Joyce is here now and we can talk about it. Cheryl Hughes is an email away.
It is not really very early but Cheryl is still sleeping. I have given her her first meds of the day and she lays back down for a bit to let them work on her. I crush her meds and stir them into vanilla pudding, some of that stuff parents put in their kids lunch. This is a new thing and for the past couple mornings it seems to be working.
My trip out west to visit my sister has planted a bug in my mind about tracking down cousins that I have not chatted with since childhood. I do not know where that came from but maybe it has to do with thoughts about family and as families spread connections are lost. Maybe the fact that a couple of my same last name cousins came to visit with Joyce and me in Oregon. Maybe I just do not know.
Nevertheless, I reached out to a couple cousins who are not the same last name. I will see where this goes.
One evening this week our three children came over to discuss what is best for their mom. It is a hard discussion. Cheryl was part of it. As we came to understand and accept the few decisions about Cheryl’s future care, I sensed a peace, a calmness descend upon my soul. Cheryl needs more help than I can give her consistently. I do not function well with little sleep.
That meeting took place a couple days ago. It may be my imagination but I sense that Cheryl is slipping away. She slept unwell overnight which in and of itself is not unusual but today she is sleeping the day away.
Carpe the next Diem. This one appears to be lost.
Maybe my night is lost also.
Writing that last line has put me in mind of controlling the things I can and letting go of trying to control the things that I cannot.
I started a single line entry in my note book a few days ago with this single line – A thousand thoughts and prayers amount to less than a single action. It was a thought for the day from somewhere. I get a lot of newsletters and other useless email. This was included in one of them.
People say or write it to each other all the time, ” My thoughts and prayers are with you.” For those who are unable to write or say actual words there is the text-message hieroglyphic picture of praying hands which Anglos interpret as prayer but Hindus probably interpret differently. I do it too. Is it cynical to think of it as a shallow and ineffective response to a request for help of some sort? Caring and caregiving are two very different concepts.
The kitchen garbage can is full. VS. Please, John, take the garbage out. Most will think this a bad example but I do not. The first is a description of a condition. The second is a specific request to a specific person.
Most of us are not specific about any need that we may have for help. It is unusual to make a specific request. It is very typical to talk about our own situation or describe some condition that we are in. Few will volunteer to help without a specific request.
Grace and peace be to all of you who help Cheryl and I without a specific request from us. We love you dearly and thank you for your gracious help.
We do not know the other person’s situation. We are not walking in their shoes. We are not taking their path through life. Let us all listen closely and ask, “How can I help?”
“… Don’t forget she’s in one piece and they aren’t you.” My daughter said to me in a text message after we had collected Cheryl from the place she stayed for a week while I went to visit my sister in Portland Oregon. (Great trip. Beautiful weather. Decent gin. Excellent wine. We never felt the need or desire to turn on the TV.)
A big part of this was a trial for me (and Cheryl). How would I feel about getting Cheryl into a 24/7 care situation? The place where she stayed in respite is a new memory care place. It is locally owned but not directly associated with any medical institution and not part of a bigger chain or group. How would Cheryl do there? It is a secure facility. Electronic locks on everything including the elevator. They do not let the visitors have a pass to the front exit door. You can be escorted by the nurse or knock loudly and the lobby receptionist will let you out. It is a memory care place. People can wander off at home but not there. That is not Cheryl’s problem.
Cheryl’s problems are numerous: dementia, memory loss, occasional confusion about space and time, Parkinson mobility issues, eating issues, hydration issues, yadda, yadda, yadda. Our life has been taken over by the evil Parkinson.
My thoughts are numerous. How would I feel about settling her in a place away from me? Would she get the same kind of undivided attention that I give her? Would she become angry with aides like she does with me occasionally? Meds and their schedule of delivery is paramount to a parkie. Would I want to micromanage the healthcare aides? Would the aides be pushy and encourage her to eat and drink like I do? Would I feel the need to be there every minute of every day? I have my eye on Bridgeway Pointe which is a place where my mother and her mother stayed toward the end of their lives. Is that the right place for her? Can they provide services for her? How to afford it?
Adjunct_Wizard 