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.
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.
This morning as I looked for pictures and other small items to turn Cheryl’s room at Bridgeway Pointe into hers, I cried again. I have been doing that more lately.
I feel a wide range of emotions as I think about this next phase of our lives that begins tomorrow.
My son and daughter-in-law visited her new space over the weekend after we moved furniture into it. I asked my daughter-in-law to look around a think about what pictures and wall ornamentation would be appropriate. I think that really needs a woman’s eye. (It is a stereotype. I know but it is what I think.) She and my son made a list and over the past couple days I have been stockpiling those items in Cheryl’s office area in the extra bedroom we have here.
While doing that, selecting pictures and reading old notes that Cheryl wrote to herself, I had several crying jags. Looking inward for a bit, I may be an emotional wreck for a time while we transition. Just writing that on paper makes me think about our life. It was great. It is less so these days with her disease being a focus for everything.
So, is it guilt that I feel unable to take care of her as I want to? Or is it grief that we have come to the end of a part of our time together? It is my anxiety. Is this best for her? And me? How will I do when she is being cared for by others? A wide range of emotions wash over me.
Is it grief or is it guilt? Why do I use the term guilt?
Change happening over a period in time. This is the word of the day from Anu Garg who has been publishing “A Word A Day” since 1990-something. He started in college.
I wrote the following story almost two years ago. I found it back looking for something else. It tickled me then when I wrote it then but reading this and thinking about Cheryl’s current state has dramatic contrast. It makes me wonder how much longer? Diachrony makes no reference to how long the period.
Black Underwear
In my new life as caregiver, I have developed several routines. Friday is laundry day. In the “delicate” load was a pair of black panties and a black brazier. And then my mind wandered off into the weeds.
When we were much younger and it was early in our marriage, I let slip to her that black underwear was for me a big turn-on. Through out our younger lives she kept this in her heart. She would let it be known through certain hints, glimpses in the mirror or direct conversation that this was a good night for what she referred to as intimate time.
On various date nights or other occasions the clue phrase was “I am wearing black tonight”. Somehow the wine in the restaurant tasted better. The conversation was closer. I quit seeing the surrounding tables. I quit hearing the surrounding conversation. I guess pheromones intermingled with testosterone does that.
Sometimes I would initiate the contact. Is this a black night? No, she responded, I thought red would be more appropriate. Well it was! It is hard to go slow and stay with your partner when she is wearing black underwear. Much more so when she is wearing red. Holy cow, I miss those days.
I guess she does too. A couple days ago, I do not recall where we were off to, but I was pecking away at this computer and she, after finishing her shower, stood in the doorway of my home office wearing only the two items that were now in the load of laundry I am folding to put away. “I’m wearing these today”, she announced. My brain went spiraling off into the weeds. Holy cow I miss those days. Sorry. I am repeating myself.
Even now I am distracted by those thoughts. Our intimacies in many ways are much closer now even though less sexual in nature. Love is a lot of things. Only a small part is sexual.
It is hard to express how much closer this journey has made us. It is hard to express how this illness has opened my eyes to things in her that I did not notice before. I am more aware that my words can hinder her. I am more aware that my words can hurt her.
This is an eye-opening experience for me as well as her. I have taken on many of the domestic day-to-day tasks – laundry, cooking and others. We have hired out the cleaning to my niece who has her own cleaning service going. We moved into a condo situation so that lawn care and building maintenance is contracted. I am amused by the fact that I have become somewhat protective of my own methods and how easily I become annoyed when she or anyone else critiques my method.
She takes care of me as much as I take care of her. I miss the younger us. I miss the crazy running around chasing kids sporting events. I miss the, “I’m wearing black tonight.” And the opportunity to make more kids. But I really love her in this moment. I just hope I am able keep caring for her and I as fear for the worst outcome, and cannot fathom why my feeble brain goes there, I realize how deeply I love her.
The black underwear still looks good.
That was written in January of 2021. These days she can barely stand much less lean seductively in the doorway in her underwear.
Some days it is heartbreaking to watch her struggling with some small task such as brushing her teeth. I find that if I merely get away from her line of sight that I am able to collect myself and not openly cry about what it means to me to see her struggling.
Then finally the meds kick in and she is no longer physically struggling but her head is elsewhere.
But does openly weeping help me cope? I think about that when it happens. This disease can and is very emotional and sadness is not the only emotion. There is love, anger, frustration, empathy and a greater range of nuance than I am able to express. Disappointment, fear, anxiety, hope, there are many. And everything is worse at night.
Some time ago it occurred to me that occasionally I would feel overwhelmed with our situation. It really did not matter what was the current overwhelming event. Name one; incontinence, memory loss, impostor syndrome, nostalgia and longing for what was, anxiety about the future, any one of those or all of those together. I felt a strong necessity to weep. So I did and tried to avoid doing that in front of Cheryl so that she would not be concerned. She seems unable to comprehend ours and her own situation. That aspect is the silver lining in her Parkinson with added dementia.
In my case sadness and heartbreak tends to show up when I am thinking about how to help her or reading some sage advice about how to respond to a situation that I felt poorly about how I reacted, and I am listening to a nostalgic melody. Michael Buble sings all Cheryl’s favorite songs, some of which are nostalgic to me also. (I avoid Michael for that very reason.)
It is often hard for me to talk about it to others. My voice chokes. I used to be embarrassed. (It is a man thing.) More and more I wonder if we do not do a disservice to young men by not encouraging them to show emotion in a healthy way. Men, not all but many, tend to suppress emotion in an unhealthy way. Later they lash out and do not know why. (Teachers call it acting out.)
Thinking about it, I can only remember seeing my father openly cry once. That was after getting news that mom had had a heart attack and needed bypass surgery. He suddenly realized how close he had come to losing her and he was overwhelmed. Dad was pretty stoic about most things. This one time in the hospital, however, the dam burst. Mom had also been pretty stoic about what ever pain she was feeling. She first felt ill on a car trip to Florida and Dad drove all the way home at her urging. I would have done the same thing. We learn everything our parents can teach us. (There are some very funny commercial messages that exploit this issue.)
If I have been holding on too long, I blast off at someone else. If it was you and you are reading this, please accept my apology and try to understand that I am my own worst enemy. If I choke up in some discussion about Cheryl, just give me a moment. Do not look away and feel embarrassed by my actions. I am not.
How do you know when it is time for an extra care facility? Maybe it is time when she brushes her teeth with Noxema and is not repulsed by the taste?
Maybe it is time when a magazine arrives in the mail and she immediately takes it apart to sort and re-sort the pages into a file.
Maybe it is time if she suddenly at 12 AM becomes interested in calling her long dead grandmother to find out where she lived when she was a little girl and is inconsolable until she can find the phone number.
Maybe it is time if you recognize in yourself that much of your patience with God’s plan is no longer available.
Maybe it is time when she is no longer eating enough to sustain life and you begin to think that perhaps others may be more knowledgeable than you at finding a solution to nutrition.
Maybe it is time if you simply want to help her more than you are capable of doing.
Maybe it is all or none of these ideas. Maybe there are other thoughts that have crept into your mind as you realize how deep your love is and how shallow your skill set is.
Living apart will probably be as hard as living together for the first time when we joined ourselves in matrimony fifty-three years ago.
It is hard to describe, for me anyway, how uninterested I am in doing the boring everyday tasks to keep our household running. Typically I write about our life and Cheryl’s symptomatic display of different nuances. A day or so ago I was a little down in the morning and I started these notes while I was lining up in my mind what I needed to accomplish for the day. I did not want to do any of it but it was either I do it or it does not happen.
This morning while I was thinking about it some more and helping Cheryl to get dressed, I got a Messenger-message from Cheryl Hughes asking how was I doing? (I sort of poured my heart out to her a week or so back when I was worried about some new behaviors Cheryl was presenting. Today she checked up on me.
I responded, — Not too bad. Cheryl slept mostly overnight. She got up once and told a long story about a play she was in as a child called “My Fair Lady’. I know the play. I had not heard the story about her and a couple of her siblings being in it. I helped her to the toilet and we wobbled back to bed. Sometimes she has funny and vibrant dreams that makes her talk and occasionally she wakes. And sometimes I become part of her dream(ing). I am looking forward to the day that her room is ready at the memory care section of Bridgeway Pointe near me. Between my generous sister and myself I think we have the financial resources figured out. My Roman Catholic church upbringing hovers around in the background and tells me I should feel guilty about that. It has taken me a long time and a lot of blog words to convince myself that it is best for both of us. It will happen in the next couple of weeks. (It’s saddening that the previous occupant is now in heaven.) This week we saw the nurse-practitioner who works with her MDS neurologist. Cheryl’s weight is down to 110#. She has lost 24# since the NP weighed her in March. She sleeps more. Today I crushed her morning meds into applesauce because she told me she does not like the pudding that I have been using. I have been crushing her pills for a couple of weeks now. Today I am fine and you are helping me to gather my thoughts about the mundane day to day tasks associated with living. Why do those seem overwhelming on some days and on other days not?
It seems as though time just drags. And all of these activities: laundry, cleaning, cooking, filing, checking, shopping for supplies and other little day to day things are just there to give me another thing to do while caring for Cheryl.
These are mundane but necessary. These are not my whole existence. It sucks to believe that this is the reason I am here. Let me whine a little. I write this for me.
Filing
I have never been a good filer. Librarians are good at this and finding things back. I am not. Frankly it is a scary task that I ignore for too long and then it is overwhelming. Categories – that has to be decided first and it has to be more specific than “stuff” or “stuff to-be-saved”. Later on more anxiety creeps in as one must decide “how long to keep the stuff?” Why is there no manual?
It is just history anyway. Only the IRS can ding you into giving up your records of stuff.
Many folks have a hobby of scrap booking. I have several note books of scraps of my journaling along through life. Does that count? I have not given them the pitch nor have I organized them in any fashion. They merely sit upon my desk in full view of the monitor.
In a previous life our purchasing department had a wonderful clerk who filed all invoices by date of purchase order and then alphabetically by vendor. Once a quarter she would empty the drawers and scan them electronically into files saved in the same order in a database. It made my life easier as an engineer. I could easily find the PO # and from that I could find the vendor and warranty information. A much better system than my “root through the drawer” technique I have now. Life needs a database.
Checking
I have written about this before and I consider this to be a great accomplishment. Early on I decided that it was unnecessary to maintain Cheryl’s shoe-box method. My files are all electronic. The absolute first thing I did was to find a piece of software to maintain my checkbook separate from the bank’s system so that I could check them and my spending.
Categories rose its ugly head early as I had to decide what I wanted to call various expenses and income streams. (Just in case the IRS decided to ding me.) I got through it. Why am I unable to do the same with a drawer full of paper. Maybe because the system I learned from Mom was put everything into an envelope called “Paid Bills” date it and put it in the drawer? There might also be coupons from J C Penny in there too.
Cooking
I actually like to cook. Generally I like my cooking. I also like to experiment with things. Sometimes the disasters are not edible. When I am cooking for Cheryl and me I do not experiment. She eats less and less these days. I have no desire to have her feel bad about not eating what I have prepared. It is harder and harder to figure out what she might eat at any one time. Breakfast was usually safe. That is no longer true.
Laundry
I do laundry almost every day. It is usually a mixed load of towels, underwear, shirts and pants. Cheryl is a pack rat when It comes to old used Kleenex tissues. She blows her nose and then puts it away in her pocket. I have become pretty adept at discovering where and in which pocket she is hiding the Kleenex. She only has two pair of pajama bottoms that have pockets. I am onto those odd pants and check them first before they hit the basket.
Today a new crisis has arisen. Who would think that a corn muffin would retain its shape through the entire hour and seventeen minutes of the washing machine cycle. I am pretty sure it is no longer edible and some of it did fall apart so now it is all over the inside of the washer. Sticky. It was folded up into the dish towel I used as a place mat the other day. (UPDATE – if you let the washer air out for a couple hours the sticky loses its tactile strength and the muffin parts can be sucked up with a dust buster or other suitable small vacuum.)
Every day is a learning experience.
I outsource the cleaning duties to my niece.
I actually like shopping for supplies either online or in the store. If I have to take Cheryl with me I cannot spend as much time shopping but it is still an enjoyable experience. And she gets out and feels like she is helping. I am disappointed that Boxed Up has gone out of business. Amazon is a big help as is Kroger’s.
This morning I am thinking about the little incremental changes this disease of Parkinson caused in Cheryl. The trees in these pictures are maples and they are turning with the season. It is not apparent in the big picture as they show below but zoom in and each individual leaf has a tinge of red around the edge of the leaf. The green still remains in the core of the leaf. Little incremental changes as the leaf begins to shutdown for the season.
Tonight and on days since I started this essay, I am thinking about the little incremental changes this disease of Parkinson that has invaded the person I most want to be with, the person where I am home, has caused in me. Our green area is smaller. And yet at the same time it is still green.
It is my goal to talk to her on a level that is her. Sometimes her behavioral response to some situation can appear childish to me. It has only recently come to me that I must ignore that perception and talk to her as I once did. Almost every morning when I wake her she will ask, “Can we still get to church?” or “What time is church?” I used to respond with, “There is no church today.” Sometime in the past I decided that response was unhelpful. These days when she asks me about church I take that to mean, “What is on the agenda for today?” She has little memory of what we may have discussed doing on the previous evening when we went to bed.
Aphasia appears often. When she is telling a story it is very important to her to get the names dates and places correct, even if she is way off the mark. Her mother is no longer on this Earth nor is her sister Janice. Cheryl tells stories about them or visiting with them in the present tense. Once in awhile I might tell her that her mom is in heaven. She will respond, “Are you sure?” That question reminds me that it is unimportant to correct her perceptions. I have a difficult time resisting the natural male response of – bullshit that is not the way it is.
It appears to me – just observation – that although she can read, the words are mostly meaningless. It the morning over breakfast we look at the newspapers. For me that is the Wall Street Journal. For her that is the Cincinnati Enquirer. I have two observations; She does not recognize that they are two different papers. She is unable to comment on articles that she may be looking at in the paper. (I have asked.) The particular article might be about some city council fiasco. She will tell a story about Sr. Janet and what the newspaper tells Cheryl about her job with the parish office.
I know there is some green still left in the middle.
I am thinking about how it has changed my focus. I used to worry about how late she slept in the morning. The why of that worry always comes back to how much sleep I will get that night. Those two ideas are connected only in my mind. They are not connected in practice.
It changes my perspective. There is a bigger picture. Just like these trees on our property, when one zooms in one sees the differences in the leaves but when one zooms out one sees beauty.
It changes my interest. What can I do to enable her to reminisce even if her memory is weak? Perhaps I can aid her reminiscence. Comment about her stories to get her to tell me more.
It changes my observation of the universe. There is beauty everywhere you look. Cheryl is always telling me about the moon when we are driving somewhere. I look too. She can see the moon in the clouds. So can I if I look carefully and listen to where she says she sees it. A shape in the clouds looks to her like the moon. I long to see through her eyes.
Maybe I could read to her rather than watching her struggle to understand printed words.
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?”
Adjunct_Wizard 