Frozen in Time

Bill_2001

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

Ed1937

Bill, you have a way with words. I'm sure you will find that you have a lot of company in the way you are feeling. I'm sorry it's so darn for everybody, especially for those like you who have to work. This disease doesn't care if you have kids in school, whether or not you have money in the bank, what color your skin is, or anything else. It just keeps taking until there is nothing left to take. And your posts illustrate this very well.

Jgirl57

I remember your post from last year about summertime blues. We are not as far along as you are and we were able to rake a road trip recently with me doing all the driving. My HWD is content sitting in the car and used to be the designated gas pumper but he was not able to do this anymore. He chatted with people at rest stops but could not remember where we were traveling to. Confusion with each hotel stop about why we had to leave and get back on the road. Not sure if we will be able to do this again next summer.

Frozen in time… good one Bill. I agree with Ed- you have a way with words.

F&E

Hi,Bill_2001. I have been caring for my late stage 6 wife for seven years and seven months.As the world turns and people move on and live their lives my wife and I spend our time together stuck in Alz. Ground hog day. I avoid and don’t enjoy social activities due to our circumstances and yes the slow progression has given me time to cope with the devastation.It feels like a smoldering slow torture.Lately she has forgotten how to open the car door and eats with her fingers sometimes. We eat out every day at odd hours to avoid others.my wife likes to roam and talk to (disturb) every one else.we go straight home due to incontinence.She doesn’t have outbursts but I couldn’t keep her quiet at the movies either. We spend our time isolated as I care for her needs and wish I could do more for her.my needs are on pause.My wife was also incredible and I miss her so much.So I am one more invisible person like you. I completely feel the same as you do. you seem to have tapped into my heart. Thank you for sharing

RickM

Bill,

Thank you so much for sharing your heart felt feelings so openly. The writings of you and so many other people on the site are so generous and help so many of us deal with the struggles and help us anticipate and make decisions in our journey through Dementia Land. I admire you and so many others that have been able to keep your spouses close by in your homes.

In this post you have talked of the cost of caring for your spouse at home, the experiences you miss, the life you can no longer live: "Slowly but surely, life’s pleasures are taken away, one by one. Not just for her, but for me as well."

Having already traveled the Dementia Road with both my mother and my father I had an idea what I was in for when my wife started her journey. She had accompanied me on my parents journey and I think this gave her some insight. When she got her diagnosis I flat out told her, and she must have understood, that I might not be able to do this until the end. But of course it was my every intention to try and make it to the end. She is my wife, my lover, my best friend, the mother of our son, how could I do anything else but care for her "until death do us part". At the same time, as the diseased progressed, there were times when I cried out: "I can't do this much longer!"

So given my experience with my parents, I knew I had to be prepared. I researched options for home care, day care, and assisted living/memory care so that I could identify my options. After declining an option for a respite care stay with my wife's sister mostly due to a sudden decline in my wife's abilities, I decided to try a respite care at a facility very near our home. "You don't know until you try"...right? All went well. The respite care is now an indefinite stay. She is accepting it very well but I am struggling. At the same time I'm coming to realize that life can go on. And it can go on for me. But not the same as before. And my partner cannot be part of it as I would like. Do I want that? Or can I accept that she cannot be part of it and move on on my own. Can I support her living in Memory Care, sharing as much as our lives as possible, while still giving me the freedom to participate in a life that is NOT "trapped in a Groundhog Day of sameness that never seems to end"?No, you are not the only one doing this.

I am fortunate, private pay Memory Care is an option for us. But it's just another Groundhog Day with a slightly different schedule, fewer physical support demands at a significantly higher price The opportunity to spend more time outside of Dementia Land comes at a price. And I found it seems to come at a significant emotional price as well. But I have a feeling you already understand that. The positive side of MC for me is that is comes with the opportunity to spend your journey through Dementia Land with folks who care for your LO and other folks who have LO's who are residents. It becomes a community. I find that helpful.

My best wishes to you. This is a hard road to travel. Peace is elusive. I couldn't agree more with your positive points. Music is magic. There is lots of fluff out there. But, in the end, it's being together that counts and taking part in the rituals.

Best,

Rick

ghphotog

Resonates!

Mint

Thank you for sharing Bill.

Denise1847

Dear Bill,

It is as if you were writing about my life. My husband was diagnosed 5 years ago and is slowly declining. I will soon be 72, and it is difficult to see an end to this, just waiting for the next shoe to drop. We essentially have one couple (of all of our friends) who will still ask us to go out to dinner. Family will ask about how things are going, but they go on with their busy lives, as they should. I see our friends travelling, having vacations etc. and know that it would be out of the question. Yes, our lives are on indefinite holds and we have to find ways to survive and actually thrive with what is left. Every once in awhile, the anger and grief of what has been lost, what will never be surfaces and I have to stop myself from going doing that path. I feel I am in a battle for my sanity and some semblance of a life.

The only upside of this existence is that my faith is so much stronger. One would think that I would be angry at God for letting this happen. On the contrary, after crying myself to sleep most nights begging God to help me, telling Him that I was totally broken, I began to slowly feel His presence and it has helped me tremendously. Now, Jesus and I are in this together. I used to think I could never take care of the house myself as my husband was very handy. However, I have been able to manage to keep things going smoothly, even under my husband's objections to "my wasting money on the house".

My heart breaks for my husband, who is very stoic and doesn't ever share his thoughts on what he is going through. I don't know if he really grasps what is happening to him. I do the best I can to support him without him losing his dignity, which is very important to him.

On most days, I somehow have hope that my life won't always be like this. Until then, I will fight like a warrior to make each day the best I can for my husband and myself.

This forum has been a blessing to me as I learn about other's situations and see I am not alone. there is comfort in knowing this and it gives me a perspective that our situation is not as bad as it could be. The people on this forum has taught me so much and I am very grateful for having found them.

Bill, I pray that you gain the strength, peace and hope that we must have to keep going in our perpetual ground hog's day.

Davegrant

Bill, Thanks again for sharing. You are not alone , in fact as I read your Comment I was struck by our similarities. My DW is also in about the sixth year of vascular dementia, (undiagnosed). I retired in 2017 and noticed changes in her when I was home all day and began gradually assuming all the duties of cooking, cleaning, shopping decision making etc. I found this web site early and it has been very helpful. I have done most of the legal stuff and are now appointed as her guardian. We have a blended family, so I have the responsibility of managing those relationships which is a tough part of the job for me plus a few grandchildren who are having tough times growing up. I am never bored and am actually busier than when I was working.

I am currently experiencing some of the outburst issues. One was last month at a high school play that a grand daughter was in and that left me shaken and wondering what I should be taking her to. We have missed some recent events with her classmates, because she is confused by all the conversation and doesn't eat because she is having food issues. She has little if any short-term memory. Her classmates call for her to come but If I don't get her ready and take her, it wouldn't happen. I would like to if I thought it was good for her but I just don't know. I guess I really think it is not. I am seeking counseling for me from the VA as I know it's me that has to change. I am finding that anything outside the home is becoming more stressful for me. Shopping, social affairs, playing cribbage at the senior center. Doing dishes is ok but making the decision to make your spouse's world smaller is a lot harder.

Caro_Lynne

@Bill_2001 Beautifully written. I am your female counterpart ♥️

gampiano

Dear Bill,

I began my morning by reading your beautifully written post. You are a gifted writer, and your ability and willingness to express your feelings is heartfelt, and shared by so many of us. Our day to day routines are all consuming and isolating. I'm fortunate to be working from home, as a music/ voice teacher. This is helping to pay for some occasional respite care so that i can attend my granddaughter's graduation and some other family events, and even, on rare occasions, go out to lunch with a friend or to the beach with my daughter. I miss my freedom to just be spontaneous! My husband did so so with the day program we have here. He lasted for a few weeks last summer and then became difficult when he could no longer be outdoors. So, i'm using that money for private caregiver a few times a month. I am so thankful that i pursued music as a career. If i maintain my health, i can continue to teach indefinitely. This is a blessing, and I'm grateful. (Who could have predicted?)

It would be great if you could engage someone to give you a break on a weekend day, even if its only very part time. We need some personal space to be ourselves, or to connect with others, even if it only for some small talk. Socialization is important and difficult to encounter when our time is not our own. I'm going to try to plan an activity for myself, even if its solo. We have a film center here, brand new, and many people attend alone. Ditto with a concert, or an art exhibit. I'm going to feed my soul this season, and i hope you can do the same.

Please continue to post, and share your writer's gift.

Maureen

Buggsroo

Bill,

Your post resonates with me in many ways. Since COVID I have missed many family get togethers such as Christmas. My uncle usually has it at his house and I have complained about it for years but realize I have missed it.

Now, that my husband is in hospital while he waits for placement, I am now in the Undiscovered Country. I am alone in the house, the place smells nice, no more urine or feces. I can play the radio, I can eat when I like, get up when I want. I feel new, tentatively putting one foot in front of the other.

I never knew how much of my life was wrapped up in caregiving. While out for a walk with a friend, I realized I was indeed starting over. This is baby steps, enjoying the sun on me, watching people walking their dogs and enjoying being outside. I grieve, I cry and I am starting to remember the good times, a tear comes to my eye and a rueful smile.

I don’t know what the future will bring, but I am up for it, while still mourning the end of a 33 year old marriage.

Beachfan

Buggs,

You deserve every morsel of happiness that comes your way. It is amazing to discover even the most mundane things you missed when you were mired in caregiving. Take each day as it comes and relish this new life that you’ve earned a hundred fold. I pray things work out for your DH’s care.

tigersmom

Bill, I am so here with you. Every morning we watch the Today show and I am reminded of all the fun things I will never do -- the way we will never travel again, never meet up with out-of-town relatives, never develop fun hobbies, never volunteer to help others. A recent visit from my sisters made it clear that we won't be having any guests in our home anymore, either. It occurred to me recently that when we get the diagnosis, we cry three times. The first is for our loved one -- for the terrible thing that has happened to him or her. Then we cry for the loss of our marriage -- the normal, ordinary husband-and-wife conversation and companionship we have always taken for granted. Finally, we cry for ourselves -- for the loss of everything we knew as a normal life. That's where I am now. Thank you for sharing. Your posts really resonate with me.

ImMaggieMae

Bill, you are such a gifted writer. Thank you for putting your thoughts here in this forum. Our story is much like yours except that I’m with my DH 24/7. When you talk about the “fluff” Ihad to stop and think about that, but it’s true. A lot of what we did before was just fluff, social obligations that were somewhat of a bore. I don’t miss that. But we also got together often with friends and had people over to our house. We went out to eat often and enjoyed traveling and having home improvement projects. Friends have become distant, many of them have moved from the area. And many that lived a couple hours away rarely visit anymore and when they do, it’s only for an hour or two because communicating with my DH in any meaningful way has become difficult. Phone calls have fallen off because people don’t know what to say. Going out for a meal is pretty much impossible because he doesn’t like being away from home for long, which can mean 15 minutes or as long as half an hour. He can usually eat on his own, but it is often very messy.

Medications have helped a lot, but the overall loss is still there. And every so often the meds have to be adjusted by increasing the dosage or just the timing. My sister lives here, but we have no children or other relatives that can help. It’s the first time in my life that I’ve felt we are really alone. Especially during any kind of emergency.

You’re right about summer. Everyone else is doing fun things that we used to do and will never be able to do again.

SDianeL

Bill, your honest heartfelt post really hit home even with my DH being in mid stage and I've only been his caregiver about 2 years. Seems like an eternity. You describe it perfectly. Ground Hog day. Before my DH's diagnosis we traveled full time in our beautiful RV. Then COVID hit and we were parked together for months and that's when I realized something was wrong. It took a year to get a diagnosis. One year ago July I rented a small apartment and moved us in. 2 months ago we sold the RV. We don't go out to eat anymore. He gets overwhelmed by the menu & has food aversions. I do have respite care one afternoon each week and have caught up on all my doctor appointments that I postponed due to COVID & his diagnosis. But now I have nowhere to go and if I went I would feel guilty and it's no fun going by yourself. I'm thinking about cancelling the respite care but afraid to do because it's so difficult to get approved and find a new person. I don't think he would do well at day care. I call him "Mr Grumpy Pants" because nothing pleases him. Routine seems to calm him so I'm trying to keep things routine. No more spontaneity. No more travel. No more social events. It's like life came to a screeching halt for us but everyone else's life goes on.