apathy about the future

RobertsBrown

I used to plan for the future.  Saved money, watched my debts, took care of my stuff.

With the loss of my wife's capacity my caring about the future has drained out of me.  I have debts and I don't care.  We have enough money to cover the cost of living, but not much more.  I don't care.  I bought a new car I probably can't afford, and I did it just so I could take my wife out for drives on the country roads.

I left a company I built and a job I love, and when this is over I will probably be old and uninteresting and broke....and I really do not care.

How about you?  Is this a phase you go through, or is this the typical result of your retirement plans shifting from fun to amateur nursing?  What do you look forward to?

Sometimes I let myself imagine a post-wife future. Then I feel like a creep for awhile. The truth is, longevity runs in her family.  This might be my life for the next 30 years.

David J

Robert, I don’t know that apathy is the right word, but during my wife’s progression I have felt numb at times. Numb to anything outside our little world, numb to the messes, numb to the lack of stimulation, numb to the never-ending and repetitive tasks of caregiving. Who has time to think about the future?

I left a career I enjoyed, though the job itself had become stale. If my wife hadn’t needed me to care for her, I would have continued working and looking for a new position. Four and a half years later, I have no interest in my previous career and hope to never work again. 

I have several hobbies and interests that I have been unable to pursue for several years. I’ve found that  as my wife’s condition worsens, and my concern for her care and wellbeing grows, some of those hobbies and interests seem juvenile and not worth my time. Will I rekindle those interests after this phase of my life is over?  I don’t know. 

I think you will find that many people here on these boards plan or daydream about their post-LO life. Some with fear, some with hope, and some with just determination to live their best lives. I have imagined my life after all this is done as a new beginning. I will be alone, with no one to answer to but myself. No longer Dave and M____, but just Dave. After 45+ years, who am I? Where will I go and what will I do?  Who will I spend my time with? Do I still want the life M_____ and I planned?  In my mind, I’ve tried on many different futures, but now is not the time to choose. There will be plenty of time later.

Longevity may run in your wife’s family, but she has a brain disease. Dementia shortens life. None of us know when the suffering will be over, until it is. Its so darn unpredictable. How can anyone plan?

Hang in there, we’re with you.

Dave

LadyTexan

Yes, I go through what you described. 

I planned for our future. I didn't expect Alzheimer's to crash into our life.

When Alzheimer's entered the picture, I planned differently. I made sure I was legally prepared by engaging an elder law attorney. I retired as soon as I satisfied my employer's requirements. I bought a small cottage close to my parents and siblings and had it remodeled so it was better suited for the challenges ahead.

Now at 56 years old, I am a 24/7 caregiver. Our financial condition is very different but we have enough. We have utilities and clean water and enough food and all of our meds. But there is nothing available for anything else.

The care giver heroes here have encouraged me 

1. NOT to look for trouble.
2. to take it on one day at a time.
3. to live in the moment.
4. to not have expectations of DH.

I am a woman of faith. I know my creator is by my side. That comforts me.

I also actively practice verbalizing gratitude. I am grateful that we have what we need. I am grateful for the special moments, that happen less frequently, but bring a smile to DH's face. I am even grateful when poop goes into the toilet, instead of all over the wall.

Sometimes when the day is really hard and I hear DH snoring, I think of what I will do when DH passes. I don't plan on a funeral. I don't want to have a gathering of "friends" or family who were absent while DH slowly deteriorated and I was in the trenches. I plan on going to a health spa where I will be catered to. SO I look at luxurious places on-line.

Other times I distract myself by looking at super yachts. Its what works for me.

This journey is so unpredictable. Some days are harder than others. Hang in there my friend.

Beachfan

I still plan for the future, but at age 74, sometimes I worry about how much "future" I have left!  I plan to take grandkids to visit their cousins across the country; for several, it will be their first plane ride.  I renewed my passport, recalling lazy winter vacations in the Dominican Republic; I suppose I could invite my grown children to accompany me.  I fantasize about lounging on the beach at a house we have at the Jersey 'shore, reading a trashy novel, napping and diving in the ocean. (For the first time in 74 years, this summer, I have not yet taken a swim, although there is still time.) I plan to take up golf again with my good friend where we don't keep score, laugh out loud and have a drink at the bar.  In my heart and my mind, I have lots of "plans", but in the middle of the night I think about DH being gone and I wonder what I will do with the rest of my (unplanned) time, if I no longer have his care routine to attend to.  

Like Lady Texan, I live in the moment, take one day at a time, don't go looking for trouble and rely on faith and family for the courage and stamina to persevere.  It also helps that I tend to be a glass half full type personality; DH used to joke that I could always find someone worse off than me.  Best wishes to all caregivers, planners or otherwise.  

Arrowhead

When my wife and I were young, we looked forward to a normal retirement between the ages of 67 and 70. We were going to travel, going places that we had never been to and would like to see. Instead, she retired at 62 because she could no longer do her job and I retired at 64 to be her full-time caregiver. We both took a big loss from Social Security. We were able to take one trip overseas the next year, but that’s all that we’ll ever be able to do. I still enjoy my few hobbies but there is work to do around the house that I have been neglecting to do. 

I’ve already begun plans on a very different future. After she goes into assisted living, one of the first things I’ll do is to replace our queen-size mattress with a standard size one. Clothes that I now have in my dresser will all fit into the closet, and I will eliminate the dressers. I know that life without her will be very lonely. So, a year or so after she dies (something I hate to think about) I would like to start casual dating. She and I began dating when we were 17 and we were married at 22. Spending time with other women will be a new experience for me. Hopefully it will make me less lonely but I plan to never get married again. 

Live for the present; plan for the future.

tcrosse

Same here. The future I long for is when this Pandemic is over, or at least the restrictions it caused are over. It has turned caregiving from very difficult to darn* near impossible. Still, one day at a time....

DrinaJGB

Yep. No funerals here, either.

  DH as an environmental architect always wanted a green burial--so that will be honored, but not with any of those long ago disappeared so-called superficial friends, and most especially not any of his siblings who betrayed him in the worst possible way while he was helpless and fighting for his life.They will never even be notified.

  Our lives changed literally in 1 day. I saw DH go off in a life-flight helicopter and said out loud "there goes our life". And it turned out to be so, so true. I had just lost my brother and only sibling. My dad was in heart failure and my DH was on life support. After spending 12 hour days in an ICU with all the lights and noise and daily chaos the entire world gets skewed and becomes surreal.

Me--not going to be buried, but only want my remains to be placed in a Texas river where so many good memories were made with Janis playing "Summertime", and a fist-full of wildflowers thrown in with me. That's it. Just my kids and nobody else

 .Leave me with the turtles and good-bye.

I have been at this going on 12 years with no idea how much longer we are in store for. No plans for the future and ready for whatever life chooses to once more fling our way. I have experienced a crisis of faith over these many years, but it has made me fearless. And I get every comfort I need straight from the beauty of nature. That and my dogs whose company I much prefer over the company of humans.

Doityourselfer

My mantra is "Get through today".  I am planning for my future of not being a caregiver and hope that I have enough time left to do what I want.   I look forward to the day when my husband is freed from suffering the cruel,  horrible,  unpredictable, nightmarish Alzheimer's disease.

amicrazytoo

I have no idea if I will know how to live life post-dementia, or if I will survive for that matter. I see so many friends and neighbors enjoying their retirement, taking trips, going out for dinner, enjoying each others company. It breaks my heart that I will not have the same experiences. Too much is happening at the same time, which has tainted my rose colored glasses. DH is a solid stage 6, leaning to 7.  My 92 year old father is under Hospice care. My DH does not realize the extent of my father's health issues. I am forever grateful I have a brother, retired, that lives within 10 miles of my father and has basically moved in with him to provide 24/7 care. I live 2 hours away and still work full time. I am using FMLA to take time off to give my brother a break now and again. My dear brother worries about me dealing with DH. The company I have worked for the last 18 years was sold this month. I do still have a job, just not sure I want it.... I seriously worry if my own health will hold out, at times having panic attacks.

Lady Texan - you provide me with so much hope, thank you so much for your upbeat postings, yeah you vent, we all understand that. Your positive attitude is so uplifting. I am grateful for things not being worse. Just harder to get through some days than others. Thanks for letting me vent.

Paris20

I don’t care as much about the future as I did just a few years ago. My husband was diagnosed with AD in 2015. Our trips to Europe stopped then and there. We took a few trips to Canada, not far from where we live, but that also stopped a couple of years ago. I used to plan our trips to France with scientific precision, choosing a new region to visit each year. Now, I wonder if I’ll ever see France, see my French friends, or speak French again. At 74, with a less-than-ideal health history, I am not counting on a future of extensive travel.

My 99 year old mother is still alive, still with most of her marbles, but with serious physical ailments. My husband is now having delusions and occasional episodes of incontinence, fortunately not at the same time. His mood swings make even short excursions an embarrassment. So, I stay home with him and his aide. I do almost all the caregiving because DH has a fit if she tries to help him. She does almost everything else, including walking my beagle, who now has terminal cancer. 

Thanks to Zoloft and counseling, I am handling these stressors fairly well. I’m satisfied to watch a good old movie or read a good book after the newspaper. I am content with my present. I know some of what my future holds so I don’t dwell on it too much.

Joe C.

RB, This is one of the most challenging parts of being a caregiver for me, just being stuck in limbo. The wife I once had is not the wife I have today, the plans we once had have gone up in smoke and trying to see a future is blurred by all that smoke I. I hope one day to move past this point but when and to where is a mystery.

Stuck in the middle

This is a lot like the old performance review question "Where do you see yourself in five years?"  Last time, I said "retired."

We can't know the future, but we can prepare for probable eventualities.

At my age (74) there are three likely possibilities for where I will be in another five years:

1)  Dead & buried, or

2)  Caring for a woman with dementia, or

3)  Cruising retirement homes for attractive, wealthy widows.

The answer, I think, is to prepare for all three and be ready for however it turns out.

Thank you for raising this question.  Helped me focus on what I need to do to prepare.

Crushed

Arrowhead wrote:

When my wife and I were young, we looked forward to a normal retirement between the ages of 67 and 70. We were going to travel, going places that we had never been to and would like to see. Instead, she retired at 62 because she could no longer do her job and I retired at 64 to be her full-time caregiver. We both took a big loss from Social Security.

With Alzheimers she is disabled . She gets the same Social security as if she was full retirement age.  My wife was 60 on SS disability  

Crushed

I made Brownies today to take tomorrow That is as far as I plan into the future.

I have been on this road 11 long years  I feel I have grown old with this disease.

 Dual careers of professional work take care of the finances. Our wonderful daughters and sons in law have five grandchildren for me to spoil. I have a ticket to Germany in October Covid permitting.  
I have done science based safety regulation all my career.   There is need for my work so I do it Pro bono 

Most days I am numb.   I have women friends who are a strength and but no romantic feelings or interests. My therapist says I was married to Wonder Woman and just miss her consatantly    

Gig Harbor

I like the idea of no funeral but going to a health spa instead. When this is over I want a period of time to only think about myself and my future.

Buggsroo

My husband hates travelling, I love it, especially North Africa. I found a trip that lasted six months starting in Istanbul and ending up in Cairo. I had saved the money for it, was excited and stoked. Hubby told me he would hold down the fort.

Covid happened and so did his dementia. The trip was cancelled due to the pandemic and problems in some of the countries that were on the itinerary. 

I don’t know when or if I will ever get back to Northern Africa.

Grief at losing my best friend and having to care for the stranger who has taken his place, loss of a serious adventure and just general confusion about the future has propelled me into living each as it comes. Though, it isn’t a bad thing to live in the present, I miss the anticipation of the future. I don’t really plan things except doctor’s appointments, so every day resembles the next.

DrinaJGB

My DH was 52 when the virus ravaged his brain. All was changed forever. I had to close his design studio and he was approved for disability immediately (still comatose on life support).

   It's that grief that is ever-present; even when you are finding distractions the grief is constantly lurking just under the surface.

The first thing I think I would do should DH go before me is find someone to dance with. One more time.

John_inFlorida

I had a lot of plans for retirement as well. Now, its like my life is on hold. It's hard to talk about, but I cant really think too much about the future and doing things again.

JoseyWales

We were too young to even have plans for retirement when DH was diagnosed (age 51), so I can't say my "plans" were ruined. 

But I have apathy too. It shows up in the way I'm taking care of myself. I've gained lots of weight, and even taking care of my teeth the way I should is a "why bother" moment.

The only thing I have done is take care of my financial life. I guess I have hopes of coming out the other side of this, but it often feels wrong to think about it. Of course it's easier to save money when you're thinking "why bother fixing that". 

June45

My plans after this caregiving job is over:

• sleep without being jarred out of a deep sleep 2-3 times a night.
• go to the bathroom without having to finish up in a hurry.
• enjoy my early morning coffee without putting it aside because the motion sensor alarm goes off in the bedroom
• eat my cereal without it getting soggy
• take out the trash or go to the mailbox at the curb without worrying if husband is going to fall while I am out there for just 2 minutes.
• run a quick errand to the grocery store for fresh fruit, etc. without having to wrestle my husband in and out of the car
• wash clothes/sheets that need to be washed due only to normal wear.
• dress, undress, bathe only myself.
• and so on; yes, I definitely have plans.

And like Josey, the apathy is shows up in how I take care of myself and the house.

M1

I think the monotony of what we have to do--and listen to, for those of us whose loved ones still speak--contributes to the apathy.  It's like, OMG how much more of this can I listen to?  My partner is still aware enough that she gets angry if I keep my head in a book or a puzzle, but it's absolute escapism.  She doesn't understand why I'm upset if I have to answer the same question again every five minutes.  Very difficult sometimes to keep the emotion out of it.  It's exhausting and upsetting, and leaves little left over for thinking ahead, planning ahead.  Especially with the uncertainty of not knowing how long this will go on.

French

Exactly the same as josey. 

An example of apathy. This summer he spent 3 weeks to his family and friends. I was alone with my children. I should have plan holidays. I was unable. 

I try to continue to take care of myself. Sport and health, yes, but my requirements in terms of dressing has decreased a lot. I don’t know if this apathy is only due to the caregiving. My daughter told me she also feels that. She thinks that covid hasn’t helped.

I was always working or planning some refurbishment in the house. I don’t anymore. The only reason is that I don’t want to add value because I want to have the means to stay there. 

Whyzit

DH and I are 80 and we have been on this Alzheimer’s journey for 10 years. He is stage 5 heading into stage 6. I’m tired, bored and probably am boring. I have lost my zest for living. Not much seems to faze me. I’m looking forward to heaven and that can’t be beat.

French

This post made me think a lot.

Now I think apathy is for the present time. I am young (50) and waiting for all this being finished. No clue what the future will be and when it will be. I just hope it will be before I am too old to enjoy.  I would feel dishonest if making plans for me but I prepare everything for him. Somewhere, it is also for me.

 Future it is so fuzzy for the moment that I really can’t imagine what it will be. The therapist told me I will need help when he will be in a MC. I hadn’t imagine it could be so hard.

In fact, with this disease we are in the fog and we live day to day, that’s all. We don't have much control over the future.

Davegrant

This is a remarkable post and gave me some deep thoughts. I have never really thought about the future as the present is so hard to think about and to understand "what is happening". I also feel it is wrong to think about the future as it seems like a betrayal and I have a superstitious fear that "I dare not go there". I never set goals for retirement except to be able to be free from work responsibilities and do what I want. I like to do everything and nothing.  But now I have a new full time job caring for my DW's needs and learning to tolerate her new behaviors which usually surprise me. Questions, hiding things, complaining, suspicion, changing roles and relationships with my children, step children, grandchildren. Her faults are now the norm and her strengths are diminishing.  So I feel alone in the world and am desperately seeking new sources of strength. In the morning when DW is sleeping I am on line at this site in a world of communication with other on line people who are in positions similar to mine and it does provide me comfort. It all disappears when she wakes up and demands that my mind  and body be available to her for the day. The morning readings get me through the day. 

T. Slothrop

I agree; these shared stories help me, and I read them, look forward to reading them, every day. My DW is in stage 4 and galloping down slope. I can imagine the future with her in MC, but it’s harder to imagine the time leading up to that.

DrinaJGB

In all these years the only way I think about the future is waiting for the other shoe to drop.

Stuck in the middle

Saw a T-shirt today that said "Don't annoy old people.  A life sentence doesn't mean as much to us."

There is truth in that.  If I were 50 and married to a PWD, I would be keeping my job and setting up placement for her care.  And I would be thinking about a future.  At 74, I have already quit my job and it is quite likely that I will not outlive her by much, if at all.  What few plans I have are pretty frivolous.  I will be an old man when this is over, fit for little beyond watching the pretty girls on TV and cursing the government.

I might find an old woman to socialize with, and an old dog who likes short walks and long naps.  Maybe I will wear purple and a red hat that doesn't suit me, I don't know.  I won't be starting a business, planting trees, or doing anything else that has a long time frame.

I hope to still be ornery.

Jeff86

The title of the poem in today’s New York Times Magazine is, “waiting on you to die so I can be myself.”

Caregiving can absorb all our physical and mental faculties, forcing us to live in the eternal present.  Thoughts of a post caregiving future are hard to envision—especially because the time frame is impossible to determine.

Because of the unknown and unknowable time frame, I’m not thinking of this any longer as all caregiving now, and (if I survive DW’s AD) total freedom after she passes.  I am starting to do some things now that create some space between me and AD.  Started slowly.  Playing tennis again, first once/week and now twice.  Post-vaccination in late spring, took my first solo vacation to visit family in Florida.  Inch by inch, reclaiming some of my life in the here and now.  Fixing up a guest bedroom where I now sleep, and bringing in a landscape architect to address water drainage issues—and plant an AD-friendly garden.  And I’m considering going on safari in Tanzania next summer.

Enabled, for sure, by bringing in aides, as DW cannot be left alone.

Battlebuddy

   This has been a great post. I can relate to so much that has been written . 

  I think for me there is definitely apathy, but I care very much and plan for the future. I don’t think I could get through this without believing there will be good times coming with my kids in the future. Belief that this is a present season but not the whole rest of my life. We are on the beginning of year 6 so a few more years? My kids are both in their twenty’s and have so much life ahead of them that I want to be a part of.  I think I experience inertia and just the influence of limbo as Joe stated. For example I have a small bookshelf of unread books. Some are gifts from before Covid. When I get the time to read them ( and there is time) I just end up mindlessly channel surfing the TV. Getting motivated to do something gets hard. 

   But I am fighting the apathy and inertia . I’ve read three of the books lately. I’m thinking about and mentally planning a Big Trip after this is all over ,with the kids- probably Ireland.  I have  plans to redo the bathroom in this house and sell it. Too many bad memories here. Too many ghosts . Going to start out fresh. But where to go and what type of living situation- that escapes me. Ive tried on all kinds of plans but so far nothing has stuck. I think I just need to get up to that season of my life to get the direction to go. 

John_inFlorida

Its wierd but it does feel wrong to think about future plans.

And it would be nice to not worry about things so much.