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.
Every morning when I wake up alone I miss her physical presence. As I get up from bed I sit for a few minutes and listen to my heart and I can sense her. I suppose a very long life of being together does that to me. Our souls are intertwined and connected through the ether. I sense her while doing whatever wake up routine I have decided upon for the day. I do not know if that is strange or normal.
Usually it is coffee and some variety of breakfast food. Today it was merely toast made from a loaf of bread that I made a day or so ago. I futz around and shower, shave and brush my teeth. I make the bed and find some clothes to wear. Today is a holiday so I have spent time making croissants to go with dinner tonight. Those are almost done rising. I am delaying as much I am able because every morning about 10 AM or so I long to visit Cheryl and touch her.
These days she is sleeping later and I do not want to disturb that slumber. If she was still at home with me I would be getting louder doing whatever futzing I conjured for myself. I would be frustrated that she was not up yet so that I could work my breakfast magic on her. It is now about 11 AM and I am feeling anxious to go and visit with her at Bridgeway Pointe. I am also pretty sure she is still sleeping or at least dozing gently and not very interested in awakening. (Today I delayed until afternoon and when I arrived she was eating lunch. )
Today is Christmas. To me that means gathering with family and enjoying the company. Listening to the grand children and discovering what their interests are. Are there any new boyfriends? Girlfriends? Jobs? Changes in trajectory of their lives? Sometimes they are too busy to talk to grampaw – gotta go! This year there is a gap in my heart. I will not have Cheryl with me at this afternoon gathering.
In an effort to get my head in the game I have been listening to a Christmas playlist from Spotify. Many of these songs are new and remakes of older songs. Many seem to have the theme of love and joy at the birth of a child who will save us all. Many talk of love lost or at least gone awry for now. I do not think it is working.
In the evening I have the same thoughts and feelings. I can sense her even though she is not physically with me. I felt that very strongly last night as a got home from my son’s house. He has the smallest grand kiddo. Small people do not bring any baggage with them to holiday celebrations and that is good for us old people who do.
The croissants are cooling now. I will go and see how Cheryl is today.
As we move down the road of Cheryl in a special place that can take care of her all day long every day, it gets easier for me to leave her. I am assured that she is getting the best care for her at this time.
The past few weeks when she was still home and it was all me, I started feeling anxious and upset with her lack of motivation to help with her own well being. I knew that her disease was getting in the way more. I was frustrated with her lack of cooperation with me with caring for her.
I was perhaps stepping on the last little bit of control that she had over events in our life. My whole waking day was consumed with her. I did not mind that but looking back, from her perspective, I was overwhelming, helicoptery and just plan annoying. There is a difference between accepting help from someone and having unwanted help thrust upon you. I was drifting into the thrusting arena.
This current situation is different. I can step back and let the aides do it – whatever it may be.
I am a husband again. Making sure has has all she needs to do for herself – whatever it may be.
What is a good way for me personally to think about, meditate, ponder my own feelings and emotions as Cheryl adjusts to her new environment? I have expressed to others that this change in our lives seems harder on me than her. It is merely a perception but she has adapted and accepts her new digs as hers.
I admitted to myself a few days ago that I felt guilt and doubt about getting Cheryl into Bridgeway Pointe’s Memory care unit. I now think it was the best decision we could make for ourselves. Many people including the nursing staff at Bridgeway have asked me how I am doing.
Dealing with feelings of emptiness…
I feel empty. It is as though a death has occurred.
Every day, all day up until November 15, 2023 Cheryl occupied my waking thoughts. On November 14th she moved into Bridgeway Pointe’s Harbor section room 137. She did not leave my heart but she left. Things were still happening on the 14th but on the 15th when I woke up, I did not have to take care of anybody but me. My day was suddenly empty.
I went to get a haircut and get the oil changed in the car. Two things that I had put off because I either did not remember to do it until it was too late in the day or I could not focus on the day to day activities that one has to do to keep it all moving forward. As I drove off to do those chores I said to myself out loud in the car that I could do whatever today and one of those whatevers could be visit Cheryl.
I suddenly felt empty again. I really hate eating alone.
Connections to others…
For some time now I have focused all my energy on Cheryl and her needs. It is time to reconnect with other friends and acquaintances and lament the lack of a life long friendship with anyone other than my wife.
Perhaps it is time to make new friendships. Have lunch. Drink a beer or two and watch a football game.
Turned inward toward Cheryl for so long…
I was and am still so focused on Cheryl and assuring myself that she is happy and we cared for I was unable to accept the fact that others may be able to do better for her than I could.
I have visited with her each day since she moved in. There is actually nothing for me to do but visit. That is fine but she is off in her own thoughts and delusions most of the day. Once she told me that I needed to take care of myself. (She has little periods of lucidity.)
I cannot always distinguish between watery eyes and simple ego. Both make it hard to see. Ego takes a lot of side stepping to see around. It really blocks the view. Watery eyes distort the view much like looking through a piece of skrim.
What is next?
For now I will devote more time to my part time activity at Mason. There are many things that I want to make sure work correctly for the red level control activities.
I want to write about our experiences more. I may back away from my blog for a bit. Writing about Cheryl and her affect on my heart is still too much. It gives me watery eyes.
I want to set up a work area in my little office space. I have always been interested in electronic things and gadgets. I need to set up a space to do those things – whatever they are.
Today I made bread. Baking is a hobby. I will have to be careful since I am the only one to eat anything I bake. Perhaps I can find others to give my baking to and make a new connection.
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.
Cheryl moved to her home at Bridgeway Pointe today. The heartache is truly indescribable. How did we get to this point? When I look at her I see the woman I fell in love with many years ago. We are older and grayer now. My love has only deepened over time. The whole process is so gradual.
A new phase begins. The previous phase is complete.
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.
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 this a couple days ago while sitting in the airport and elsewhere. I mulled over many thoughts that I had about family and siblings and care giving and end of life. A great visit with my sister and only sibling alive comes to a close.
Joyce asked me if I was shifting back into caregiver mode. I am. I also think that I never left that mode or mood. I was far away but the kids were close by for Cheryl. David took it upon himself to visit his mother every day. I was able to relax a bit.
In the collection of photos below in the picture immediately above the lighthouse there is a little white speck to the left of center in an otherwise empty ocean. That is a whale spout.
When I return we ( our family) will be planning, thinking carefully about future care for Cheryl. This was a test for us all. There are lots of imponderables. What is best for Cheryl? How will we finance it? How will we respond to her needs?
I was reading the St. Anthony Messenger today which is something I rarely do. This little prayer at the end of an article about self-compassion struck me as apt. It also reminded me of Mom and something thing she told toward the end of her life. She said, “I think I need a mother.”
What she meant was she was tired and needed to have someone else be in charge. We all need to give ourselves a break.
At the end of her life I took control of Mom’s finances and I did not always do what she wanted me to do. Sometimes I thought her ideas where crazy (not the right word) and told her so and later I would feel guilty about it. I needed her to be the mother.
Sometimes I think about Mom when I am helping Cheryl. In many ways Cheryl is slowly, ever so slowly wasting away like Mom did near the end of her life. Sometimes it makes me angry, sometimes sad. I am always trying for better and more compassion. Some days it is just plain hard.
Adjunct_Wizard 