The heartache is indescribable.
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.
Our little house is so quiet.
Carpe Diem
Is it guilt or is it grief?
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?
There is much to meditate about.
Carpe Diem.
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.
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.
Our love is still strong.
Carpe Diem
… and help us to get to the end of our journey. And help Paul get home.
She added this to the end of the meal blessing spontaneously. I was surprised. Lately she has been struggling with a few delusions about her deceased sister Janice. (Her conversation will start, “I talked to Jan when she was here…”) I resist telling her Jan died in some of the early covid deaths. She was very close to Jan in their childhood years. They slept in the same double bed right up until we were married. Sometimes she calls me “Jan” in the middle of the night as I make my way to the toilet.
This blessing did precede another discussion about Janice. To Cheryl, Jan is not gone. Perhaps that is a good thing. We live on in those who remember us. (A quote from someone else not me.) Cheryl’s mother lives on in conversation with Cheryl too.
When she pronounced this blessing at the end of the standard, bless us oh Lord and these thy gifts – it surprised me. Perhaps in her lucidity and presence for a minute I was transported to our younger lives when occasionally extra prayers were added. Her brother always adds … may the souls of the faithful departed rest in peace.
I did not ask what she meant by her prayer. Those thoughts are private to her and if she wants she will tell me. Throughout her continuing decline with dementia these small nuggets of situational awareness bubble up to the surface for me to ponder.
Help us to get to the end of our journey… (and your thoughts here).
God, I love her.
Carpe Diem
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.
Carpe Diem
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 makes me sad and anxious.
Carpe Diem
Recently, just because, and because I am in charge of it, I decided to change laundry detergents. For those of you non-Parkinson households that do three loads of laundry or less a week this mostly empty container will last more than four months (4+mois).
When we went to Florida last June with our daughter’s family I took along a quart or so of the liquid detergent that I have been using for some time. I set up a subscription on Amazon which is handy until you become overwhelmed with that product. I have since cancelled all my subscriptions to products and suffer through the occasional absence of it when I need it.
I noticed that My daughter brought along and had parceled out portions of dry detergent. I asked if she liked that better and she replied it was about the same but she had had a front loader and the liquid seemed to goo up the door seal so she switched and never looked back. (I think women get better laundry training but that may just be my male stupidness about laundry and women talking.)
The next time I needed detergent I looked for powder. I did not know what I was doing. I bought tide pods with the child proof cap. Sadly it works worse than my liquid. I will not purchase it again. In fact I may not use any Procter & Gamble products for awhile until I get over my disappointment. The blue stains in this image are from the pod itself. The wash cloth is supposed to be white (cream). I should have left the child proof cap on.
The good news is that if the towels are washed a second time with the same substance the stains seem to come out. I have several. I wash towels in HOT water. My washer shouts hot out to me. This is perhaps a clue to correct use of these pods. Maybe there is only enough for two months if cold water is used instead of HOT.
Instructions just say toss it into the bottom of the washer and add the clothes. The t-shirt that landed onto the pod the first time I used pods had much of the pod goo stuck to it after the wash. I thought it to be a fluke because men do not get detergent and laundry training. Alas, I am incorrect in that perception.
Amazon will bring dry detergent to my door. I do not have to stalk it down in Kroger or Walmart. I can even get it in sheet form so that I can mistakenly put it in the dryer.
Cheryl thinks her idiopathic Parkinson’s disease stems from growing up less that a mile from the P&G soap plant in St. Bernard Ohio. Chemistry is complicated.
Carpe Diem.
You can make an excuse or make something happen.
An inspirational thought that one of the newsies said on the TV this morning. The truth is that some days one simply wants to sit and recharge and be left alone. Parkinson and associated dementia does not allow care partners to be in that space except during short snippets of time during the day. Parkinson care is relentless. Find that special time for yourself.
My favorite time is from 7:30 to 9:30 or so in the morning. These days Cheryl rarely wakes before 9:30. This time is special. I get coffee, poke at the news, poke at this blog, wordle, quordle, octowordle or simply read. During the summer months I did chair yoga on the back patio and enjoyed the sunrise. Quiet bliss.
Make something happen for you today.
Carpe Diem.
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.
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.
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.
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.
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.
Carpe Diem.
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.
Carpe Diem.
Adjunct_Wizard 