Frozen in Time

Posted by bill2001 @bill2001, Jun 7, 2023

My dear wife is going through a very long period of stability in her current stage of vascular dementia: Late Stage 6. I have been a caregiver for seven years and eight months now.

Long, stable periods of seemingly non-progression of dementia is generally a good thing, in that it gives a caregiver plenty of time to adjust to their loved one’s current temperament, needs, and reactions. My wife’s behavior and needs have not changed much this year, except for very minor additional needs. For example, she now needs me to show her how to wash her hands. My life is still a repeating cadence of care giving in the morning, shuttling her to daycare, going to work, picking her up from daycare, and returning to care giving in the evening. Mixed into that schedule are all household chores and errands, leaving little time for life’s pleasures.

Most days, I operate on auto-pilot, with the days blending together into weeks and months, which of course turn into years. My life changes very little, sans the slow downward progression of my wife’s dementia, and the steady, upward creep of her care giving needs. Do I even notice that my friends’ kids are marrying and having families of their own? I cannot attend the weddings, as it is too much of an ordeal for my wife. Time marches on – people’s lives progress – and mine does not.

Summer is upon us. I have written about this before, but it bears repeating: I despise Summer now. This is the time to hear endless stories about other people’s graduations, vacations, weddings, and all of their fairytales. I do get my wife outdoors every day, even if just for a walk. However, her incontinence and outbursts prevent my bringing her to any formal event. Summer is when everyone else’s lives seem to progress, move forward, and those changes add up drastically over the course of years.

My wife and I are anachronisms in an ever-changing world, and it is most noticeable when those changes are happening to your close circle of family and friends. I keep a stash of special occasion greeting cards handy, since we cannot participate in any of these wonderful celebrations of life’s niceties anymore.

“Congratulations on Your [insert unicorns-and-rainbows here]. I regret that we are unable to attend, but please enjoy the enclosed gift card.”

“Thank you for the dinner invitation, but it is no longer advisable for my wife to attempt to have dinner in a sit-down restaurant.” (She may speak inappropriately or have a bowel accident while we are trying to eat. It is safer to stay home.)

My wife’s dementia includes outbursts and loud responses that are not appropriate for the occasion, so I have learned that it is better to preserve her dignity and just keep her at home. Even a visit to a local movie theater resulted in people shushing her, so I gave up and took her home. We streamed the movie at home when it became available. Slowly but surely, life’s pleasures are taken away, one by one. Not just for her, but for me as well.

Another Summer means that my family and friends lives simply move on and we are mostly forgotten. No ill feelings – that is just the way it is. We are here, frozen in time and grounded.

Life goes on – but it does not progress for everyone. Sometimes I wonder how many other people are as invisible as I am: Caregivers trapped in a Groundhog Day of sameness that never seems to end. Caregivers tucked inside their homes, helping their loved one eat, drink, move, and use the restroom. Day after day, and unseen by the general public. Am I the only one doing this? Is there really a world out there, or it is a figment of my imagination?

I move through each day in a fog – although I can clearly focus on my wife’s care and my job. It must be a survival mechanism, for I barely even notice the world moving forward around me. I have occasional moments of vision, when I see the outside world and its progress (including family and friends’ lives), and it strikes me as surreal. Not only are my family and friends constantly progressing and having experiences, but even something like a new business in my neighborhood may go unnoticed for months until I suddenly see it and ask, “Where did that come from?”

When this is all over, will I feel like I have awakened from a coma, or perhaps been transported to the future in a time machine?

I make a point to be positive and helpful, so I will add this: I have mostly lost the desire to travel, and I am finding that I do enjoy quiet evenings at home. I have been able to get a lot of home improvement projects done, inside and out, with my dear wife watching beside me. It can be a cozy life, with many quiet evenings watching movies and listening to music. My wife’s face lights up when music plays. Music is magic for dementia patients.

Spending more time at home has also allowed me to unveil another pleasing point of view: A lot of what people do and share turns out to be a whole lot of fluff. Weddings are mostly attended for the food and open bar for which the bride and groom will be paying for over the course of a decade. Traveling is costly and risky. Graduations are basically a bore-fest. This point-of-view has helped me cope with my current lot in life. I have a built-in excuse to decline invitations now.
I do miss taking my wonderful wife to restaurants, and I miss having real conversations with her. She was an incredible person before the dementia robbed her of her very personality.

If these feelings resonate with you, I would love for you to share.

With Love, Bill_2001

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

meitsjustme | @meitsjustme | Jun 8, 2023

That's a beautiful post, Bill, and you're current life is a lovely tribute to your wife as she was before the illness. Yes, caregivers are invisible. Unpaid, unappreciated, even untrained in a lot of cases. The main thing that gets me through is remembering I'm not alone. Your challenges are much greater than mine at the moment. Your devotion to your wife's care is a beacon. I loved reading about how your desire for travel dissipated. I hope that happens to me.
I can still work and focus on my work. It's an escape valve. But, feelings like sadness about my husband's and my hopes for the future, anger that it had to happen to someone as bright and loving as he is, hopelessness for any real treatment, frustration with the day-to-day things that need to be fixed because he did something goofy to something (again), and mostly fear of what comes next, still find me. Sometimes the anxiety is overwhelming. And, nobody understands except people who are in it or have been in it. It's lonely. But, yeah, the feelings resonate.

milliemae | @milliemae | Jun 8, 2023

It’s a tough thing to go through. We are going through the same things except I fortunately don’t have to go to work. I couldn’t possibly get everything done. We have a gal that cleans the house every 2 weeks. We have a 5 year old dog that is a lot of company. I try to realize that we are blessed in so many ways and grateful for the blessings we have.
Maybe you can order a meal from your favorite place and have a candle light dinner together. We have a private backyard and flower garden. We will be celebrating our 50th anniversary this month. I do feel sad that we won’t have a celebration ( outside of the 2of us) I know it’s Gods plan and I pray and make the best of each day. God Bless .

rjchambliss5 | @rjchambliss5 | Jun 8, 2023

I do appreciate all of the above expressed thoughts and feelings. I am thinking and feeling the same and am grateful for family and friends who care and am thankful for my church and small group church groups. Kind people mean so much! Love to all the dear people in this special “club” we share together.

Teri | @tsc | Jun 8, 2023

To @bill2001, @meitsjustme, @milliemae, @rjchambliss5 and all other caregivers,

We just carry on, day after day, doing what's necessary to make our loved ones safe, comfortable and engaged. We are the quiet marchers. Life as I knew it is gone, but maybe a lot of it was fluff. I had open heart surgery and a mysterious autoimmune disorder and managed to take care of my husband through all of it. He was still pretty functional so it wasn't that difficult. The pandemic caused us to isolate. I was grateful.

I found myself not missing much of my former life and becoming a bit of a hermit so when some friends pushed their agendas to get together I panicked. One day of being very active, experiencing my own strength made me feel better, and I started coming out of that reclusive mindset. I'm looking forward to having a friend and her husband who live on another island over this weekend, hoping it goes okay with my husband, who thinks of visitors as invaders. I just keep reminding him they're coming and he can go into our bedroom anytime he wants to. Hoping it goes well. If it doesn't, our friends will understand and leave.

It's just the circle of life. Work hard, take care, rest, give support when we can and take what we need from others to continue this journey. Cultivate the solitude we need to stoke our inner spark.

My husband insists on pronouncing recreation RE-creation, but maybe there's something to that. Allow ourselves time to RE-create when we can. Read a good book, work on a puzzle, revisit an old hobby, have lunch with a friend once in a while, watch something good on tv.

Thank you all.

Teri

meitsjustme | @meitsjustme | Jun 8, 2023

Dear Teri,
Your lines about "cultivate the solitude...stoke our inner spark" really spoke to me. Thanks for the wonderful post.
Anne

bonnie48 | @bonnie48 | Jun 8, 2023

Here’s another caregiver saying yes to you, Bill2001. I am 75 & thought I was invisible due to my age, so thank you for the insight that it’s also about being a caregiver. Most days I don’t get out of the house or away from my partner of 20 years. Recently his son started staying with him on Thursdays, & I am expected to shop, go to medical appointments, everything on that one day. We are in a club of which no one wants to be a member, to paraphrase WC Fields. Still, it is a club. Please think of your fellow members cheering for you from our own hideouts on your rough days.

randywhite | @randywhite | Jun 9, 2023

These inspiring posts provide me with a window into future prospects. Not to be in fear but in anticipation, and considering how to best re-shape life now to accommodate such possible eventualities. Now is the time for making the most of the blessings at hand, and being pro-active towards the future. Meanwhile walk in Sanctos Momentos
God Bless y’all

lena0825 | @lena0825 | Jun 11, 2023

They resonate more than you know. My husband was diagnosed with Lewy Body Dementia nearly 3 years ago, but has developed Capgras Syndrome in the last 9 months as well as "psychosis with Parkinsonism" (that is mild for now). He has practically no short-term memory, little executive function, understanding of conversation, difficulty expressing his thoughts. Trouble with visual & auditory perception. Visual & auditory hallucinations & delusions. Just starting Nuplazid - had to skip a week due to a mix up in delivery, so starting over with a larger dose. Need several more weeks to before we see any real effect.
I try to keep up with my non-caregiving responsibilities, i.e. Treasurer of my church, web admin/Board member of my professional society (I'm now retired), my gardening, etc. But it is difficult. I'm supposed to be developing a course for the Spring 2024 semester at a local university. However, I now feel I have to beg off.

So, yes, I too feel frozen in time. I'm alway telling people "sometime, when" but not finishing that thought out loud. None of we caregivers are alone in this. And I find posts like yours to be very comforting. I will continue to think of you.

Pauline (Lena)

teacher502 | @teacher502 | Jun 12, 2023

Bill, I do hope you are keeping these posts in a journal. You are an exceptional writer, and your message needs to go beyond this group. You have lifted my heart and encouraged me in the daily, mentally, physically, emotionally, and spiritually hard journey. I print off your entries to read and read again. You have a poignant gift of communication, and I treasure your words. By the way, if you do compose these entries into a book, I would like a signed copy!
Jan (teacher502)