What do you see for yourself post dementia?

Ed1937

I doubt that most of us even consider that question, but maybe we should. Especially for those of us on the younger side. For me, I consider my work done, and life for me is in the early winter of the season. I had one brother and one sister. My sister died at 89, and my brother died at 88. My mother died at 86, and my father was only 43. I will be 85 next month. I recently told my doctor that I wanted to be considered DNR. Although I don't think I have a life threatening disease at this time, I will not opt for major surgeries, if they think I need one. I want to live my remaining days with the best quality I can have, instead of spending much of it recovering from surgeries. Just keep me comfortable, and let me go. What do you see?     

M1

Great question Ed.  Because of our 15-year age difference, I have always had to anticipate that I would outlive my partner.  But i find it pretty difficult to look that far ahead.  And now with how difficult things have been, I feel like all of that has been put on hold, and I am lucky to be creeping day to day at this point.

In an ideal world, I would move away from Tennessee and start over; although this is home, there are a lot of ghosts here for me, and it was with some reluctance that I ever came back after college (too long of a story to bother with, and too long ago).  But I don't know that I will have the energy or the time it requires to establish somewhere new.  

Gig Harbor

I will definitely stay where I am. We bought our house 10 years ago and it is a house I can easily manage. I am working at expanding my circle of women friends. I have joined a bunco group that is mostly women 30 years younger than me but they are fun and it is only once a month. I joined a New Neighbors club and found a walking group that meets once a week and another that is interested in music (primarily jazz) and plays. Being frugal women most of the events are high school and college plays and music functions by local musicians. They go to at least 4 events a month. I always sign up with enthusiasm and then when the night comes I wish I hadn’t but when it is done I am glad I went. I realized that unless I made the effort to go I would eventually be alone most of the time. I am now looking for a pinochle group and a volunteer activity and my schedule will be full enough to keep me from being a hermit. Oh and I have 6 dementia support meetings a month that I can attend. It is hard when most of your friends are couples so I am treating this as a necessity for my mental health.

Battlebuddy

   This is something  I think about everyday. I go back and forth on what would be best for me. I came here to Florida , from New England. We made the move so my husband could be near his family. My family is up North, but I couldn’t go back easily because of the cost. I would love to live near future grand kids ( Son is engaged). 

    I just don’t think I can answer the question till I get to a Post Dementia time in my life. But I fantasize about traveling to visit friends and family again. I would love to take some small driving trips to Savannah and Charleston. Want to go to Ireland. 

   The question of this house comes up a lot. It’s very manageable( one floor, easy to maintain, and a nice garden. ) But the kids say it has mostly bad memories since we moved here after his diagnosis. They say they never want to sleep in the room he will die in. But I often find this house cozy and am not afraid of the bad memories. My little niece said “ you can make good memories later” 

     Sometimes I save peoples answers to questions. I remember someone posted saying when this is over they want to be as healthy, productive, and creative as they can. That is my main wish. My kids are in their late 20s . Want to be here for them.  So I want to do anything that keeps me healthy , creative, and upbeat.

Arrowhead

My wife is in state 6 and I have often thought about life without her. We started dating in 1972 at age 17 and I can count on one hand all the other girls I ever went out with. I plan to wait until a year after her passing and then try dating again. However, I also plan to never get married again. There are several trips that I have already planned that I will be taking. I will continue living in our home until age or health dictate otherwise. It’s an easy size to take care of. The queen-sized bed is coming out or our room and will be replaced with a smaller one. Two dressers will also be removed. I will also get back to bowling, shooting pool, fishing, building and flying my model rockets, and eating out.

Ed1937

Gig, I would be interested in enjoying jazz (primarily vocals) with you. Although it has been a very long time since I've played pinochle, I'd give it a try too.

ghphotog

I would like to spend the first year doing and going where and what I darn well please.
After I regroup, then sell the house and buy some smaller place somewhere, another town possibly but all of my friends are here.

I'd like to date again but doubt I could ever marry again. I'm relatively young at 61, so is my DW and "IF" the stress of this long haul trip doesn't get my health then I'd try to travel, fly-fish, and play a lot of golf. I can't remember what it was like playing golf stress free. I still try to play but I'm always thinking and checking on my wife while I'm playing. 

You don't play golf to relax, you have to be relaxed to play golf well, at least the guys I play golf with. It's serious business as a beer is at stake.

I just want a whole year to myself to regroup.

60 falcon

I don't know. What I do know is that life after being a caregiver is nothing like I sort of envisioned or hoped for. That could be because this is so new to me. Even though I'm "post dementia", dementia has forever changed who I am.  I wanted it to be over so badly, but I don't think it'll ever be over.

I feel like I have a lot lost time to try and make up for with my two sons.  I know I don't want to be tied to a job again.  I'd like to spend more time with my parents while I still can.  I'm not sure I want to continue living where I am now but I don't know where else I'd rather be.  I can't see myself in any serious relationship but I miss talking, sharing, and confiding with a lady.  I have no true friends anymore.  I retired early because of my own cancer and soon after was a 24/7 caregiver so I need to be extra wise with the my money.  At only 58 yrs, there will hopefully be time for me to figure out this new life.

saltom

ED, I'm with you.  I'm 86 and DH is 89. He had a sister and brother both die at 89 and one living sister who is 93 and in relatively good health.  I just want to hold out until DH goes  hopefully before the dementia gets much worse. We both have do not resuscitate orders. I don't want to leave our daughters (one who has early onset) having to care for invalids, and we've had nearly 64 years of a good life together.  I'm definitely in the winter season - and I have always loved the winter.

Dio

Great question, Ed! I think about this all the time, which I probably shouldn't cuz it depresses me to no end. I just want my life back, to do all the things I love to do, return to painting, reading, socializing, eating out, resting, exercising and taking care of myself. Just to be free everyday without thinking about what I cannot do that day...

JJ401

Post dementia, if I am not one of the caregivers who dies first, I’ll reinvent myself. I did it once; I will do it again. 

I still vividly remember the time after DH#1’s death. My feeling of diminishment. He was gone. The us was gone. Just I was left. It took time, but I rebuilt a life. I met DH. We fell in love and married.

This time exactly what I’ll do, I have no clue. Last time I had one child left to raise. I could not fall apart. This time I won’t have that to stabilize me. I try not to think that far ahead. One day at a time. That’s all I can handle for now. 

Battlebuddy

I like this idea of taking a “Recovery Year” . Someone said something similar to me. That you shouldn’t make too many big decisions for a year ( selling houses etc.)  They said people don’t really think clearly because of grief. So it sounds like a good idea to just enjoy the simple ways one has one’s freedom back. Wouldn’t that be great? I’m just going to be so relieved that I’ve survived this experience. The thought of being able to just pick up and go will be just terrific too.

M1

Ed, thanks again for starting this thread, it's really pulling at my heartstrings (which are pretty raw these days, anyway).  So many lives forever changed.  Falcon, you're ahead of me--but i get what you're saying.  I'm definitely becoming  a different person because of this experience.  Channels are being carved.  Too soon to know or to see very far ahead.   I hope I can stay young at heart.

Crushed

I'm 71.  I have my daughters full support to have a social life. I'll have dinner with anybody. 
But the love of my life has left a shell and memory behind that still tugs at me every day .  
Would I feel differently if she died ?  I don't know.  As my therapist says  "when you were married to wonder woman, its a hard act to follow"  

However I will continue to live in the house I renovated for aging in place.  I was always the homemaker.   One daughter is 3 miles away the other 35.  I have five incredibly cute grandchildren.  I am in a medical care center of the universe.  I am having solar power installed on the house.  

I will just see how it goes.  

PaulaJM

All I can think of right now, is that I will breathe and mourn the loss of my wonderful, kind, brilliant husband.

Judi57

For the first week or two, I'll probably sleep and rest and be selfish.  Do things I want to do and live my life instead of his.  I want to smile and laugh instead of cry.  I want to see things in a positive light instead of a dark, gloomy day.

I had thought about traveling and visiting relatives, but I changed my mind.  I will be staying in our one story rancher that my husband built, so instead of traveling, I'll take the time to remodel with colors, furniture, and decorations that I like.  I'll declutter and start new.  

I also plan to be more involved in my church.  I used to go regularly but haven't since Covid reared its ugly head.  With Covid settling some, I've found caretakers not wanting to give up their Sundays, so I've been watching our service online.  My faith has kept me going, and it's time to pay back that community.

I may go out with friends, if I feel like it, but I will not remarry.  I'm too afraid I may end up taking care of someone else.  I never want to go through this situation again.  It has changed me, and as of this moment, I'm not sure if it is a good or bad change.  At times I do feel bitter and robbed.  Like others, I went from retiring from a teaching career to caregiving.  I want to live a life of retirement.

I also want to take care of myself better.  I hope to erase the aches and pains of moving a larger than I husband around as he became more and more immobile until he is now bedridden.  I want to increase my walking from a half hour to an hour a day.  I want to eat in a more healthy manner instead of just throwing something together from whatever I have in the refrigerator or cupboards. 

To really sum it all up...I just want to be me again.

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Ed1937

60 falcon wrote:

What I do know is that life after being a caregiver is nothing like I sort of envisioned or hoped for. That could be because this is so new to me. 

I can relate to that. For me, it's been five months. I don't see any upside to living anymore. Maybe I'll see things differently in the near future, I don't know. I always told her I hoped she would go before me because I knew whoever was left would have to live the aftermath. I didn't want her to do that.

Just Bill

I live in the moment. I reflect on the past and I have some dreams of the future but those are abstract thoughts. Day to day life in the moment is where my focus is. My objective is to maintain a sustainability in the right now. I could either be miserable in the moment with some abstract dream of potential happiness in the unforeseeable future, or find happiness in the right now without having to wait. This horrific situation I am in is forcing me to seek comfort in things I can control. If I can workout and meditate every day that is the positive light in my life. If I can do that I can handle anything the day brings. The harder things get the more I appreciate the little moments of happiness I would have otherwise missed. Watching my wife die a slow death sucks but I cannot have that notion dominate my thoughts and depress me. I am very mindful of the symptoms of depression and probably overcompensate to not have them. Sleeping all the time is a symptom. My solution is to work on my discipline and get up at 4 in morning. Losing interest in life is a symptom. I am embracing life, all of it good and bad. I maintain as many positive routines as I can. I handle all the bad stuff as cool as possible. If the day gets tough, thinking about my discipline to meditate and workout makes me happy. There is a feeling of satisfaction I have always gotten from hard work and caregiving is hard work. There is another human being who's life depends on me. I get a satisfaction out of the work that makes that happen. I have no idea where my head will be when she dies, but just like now I will take every day one moment at a time and seek happiness and sustainability on  a day to day basis. I will be lonely and sad and I will grieve, but I will also continue my happiness routines I have learned to cope. I will still embrace this life I was given right to the end.

Beachfan

 Having placed DH in a MCF about a year ago, and considering that for a long time he has not recognized me, family or friends, I think I’ve had a glimpse into my future after caregiving.  I’ve had a year to rest, relax, regroup, and reconnect. I haven’t traveled the world, partied till dawn, or looked around for new acquaintances or new activities, nor do I plan to. I’ve quietly returned to the gym, arranged a few lunch dates and outings with good friends who stood by all along, spent loads more time with my kids and grandkids, browsed the library and the mall at leisure, enjoyed our little beach house during the summer and in the off-season; generally just going through life day to day without the albatross of caregiving around my neck.  I’ve been grieving the loss of DH since the day he was diagnosed back in 2010; little by little the blow has softened so that I feel that I am ready for the inevitable, but I’m not.

My son-in-law often says “ you can only control what you can control.” Wise words to live by. If I could only control my wonky knees and my short game and putting, I would dust off my golf clubs and accept  my grandson’s  challenge to a golf match.  Maybe come spring……

toolbeltexpert

Life after is something I can't envision, maybe because I don't think I am going to outlive my dw. Her being in memory care has its benefits. I know she's getting 24/7 care. But as far as her and my happiness that is another thing. She has gotten stuck, she doesn't remember me being here daily for hours and now she is getting depressed, talk of self harm have popped up again along with tears and sadness, of course I tell the staff when this happens. I know she's not gonna remember and maybe soon she will forget who I am.

Today a cna was telling me of these behaviors of tears and saddness. The staff has suggested maybe a white board where I can write something everyday before I leave, so they can show her I have been there.. If anybody has a helpful suggestion about how they have dealt with this I would be greatful.

My house has been on the market for over a month with no bites. I do love where I am I can continue to work out of my Garage. I just bought some equipment from an auction to repair but haven't had time to unload it from the trailer. Picking up usually requires a big part of the day and now with the sun going down early I am getting home after dark. I still heat with wood and have to bring a wheelbarrow load everyday plus keep the fire burning.

The only reason I am selling is to be closer to dw and to help fund her care.

I like to eat out but not by myself, it would be good to have a friend to share a meal not necessarily eating out I wouldn't mind cooking. I don't enjoy being all alone. I do eat with dw at mc sometimes. I believe a meal is meant to be shared and enjoyed, being alone, a meal just feeds the body.

At some point if I survive I would like to teach the Bible because I was called to this.

This wouldn't necessarily mean being a pastor or evangelist.

I had started writing a commentary many years ago verse by verse as the spirit leads, I haven't written in a long while, I won't blame it on anybody but my own slothfulness. 

My sermons were not preaching sermons but teaching. Preaching is telling somebody something they know they are not supposed to do. Teaching is telling somebody something they didn't know. I spent 1000's of hours reading the Bible and got understanding from the holy spirit. I'll quit here because it may sound boastful and I have nothing to boast about except the grace of God which has abounded in my life.

 

Ed you have the right attitude and hope you have many more good years and find someone to share them with, your not ready to quit from what I have read.

 

I have enjoyed reading all the posts and the promise of something beyond the big D road we are on.

Stewart

June45

Falcon and Ed I can relate to much of what you both have expressed about the post dementia life. I also lost my husband recently, about 5 months ago.  I am 70 yrs old so I am almost exactly half way between your ages.  I took care of my father, my mother, and my husband and I am tired. I know we aren't suppose to discuss faith but I have a greater hope than this earthly life.  Right now I am trying to get things in order for my daughter. She live 3000 miles away in another country and it won't be easy for her even with the best planning on my part.  (Special note to Falcon: you are still very young and once you move forward through this grieving stage, I really hope there is a good life ahead of you.)

60 falcon

This really is a good thread, for me anyway.  It's interesting the difference in perspectives between those still caregiving and those of us who are done.  Young and old.  My own perspective took a sharp turn when Pat died.

In so many wonderful and sometimes surprising ways, our spouses made us and our kids who we are today.  After our spouses find peace, they continue to live on in us.  They would want, and expect, us to find happiness and purpose in life without them being physically with us.  While we were/are caregiving we found happiness and satisfaction in the small "wins" and touching moments that sometimes happen. Now after we lost our spouse it's kind of the same thing, accepting the small wins and finding happiness in moments that come out of nowhere.  (Ha, I'm write this as much for myself as for anything else. Kind of self help because I really need to see it, hear it, and believe it myself.)

Caregiving and grieving are both so hard. Looking to the future is good.

jfkoc

Miles Davis....After Midnight

Can I join the jazz lovers???

Janco

I think about my future life in a guilty way.  Post-dementia means that my husband will either be in some assisted living situation or dead.  Either way, I feel bad even thinking about it.  But if I put that feeling aside for the moment, I first fantasize about getting a big dumpster and throwing away box after box after box of useless and never-looked at papers and magazines, articles, letters and postcards. Finally, I would be able to give the house a thorough cleaning.  Then I would sell the place and find a condo without the need for much up-keep.  Probably also cry a lot.

LilySue

I love your attitude, Beach Fan. Like you I've been grieving for the last ten years since DH had the stroke that left him totally aphasic and with the start of dementia. One would think I'd be used to this by now, but I still grieve every day. Our kids and grandkids live close by so that's a real comfort to me. I'm able to have DH at home with the help of live-in caregivers, something that obviously has its pros and cons, but it's important to me to have him at home. A month ago I had a total knee replacement, so life has definitely slowed down. It just helps to stay busy.

Ed1937

June45 wrote:

Right now I am trying to get things in order for my daughter. 

June, about 2 or 3 months ago, I prepaid for my final expenses. I don't know if you did that, but I feel relieved now that I did. We already had plots paid for because we lost a son in 1998. We also had a monument before my wife passed. My daughter and I worked together to have a double marker made for my wife and me. And my funeral is paid for. I'm so glad all of that is done. 

PookieBlue

 Ed1937

“What do you see yourself post dementia?

Great question Ed!!! How did you get so smart?

As the years progress through all the dementia, I visualize the future as often as I can. I’ve done this ever since I can remember so when my retirement got filled with dementia changes and adjustments every time I turned around, it was a shock to my entire being. I knew the world ahead of me was not what I envisioned.

We have been traveling via RV since the mid 90’s and I knew I had to learn as much about driving and maintaining a 40 foot motor home with tow jeep as I could if I wanted to keep doing this. I’m pretty proficient now and have taken my DH and pups on four to six week trips yearly the past four years. It is really challenging not to have any help with prep, planning and driving. I would like to scale down to something that is less stressful. A travel companion would be nice, but not essential. I have four brothers and six sisters plus extended families I could visit if I do it alone. If I had a compatible friend, I’d take the time to enjoy all the beauty this nation has to offer. 

We’ve been living in a beautiful home for 24 years, and the property is lovely, but way too big for the two of us; way more than I want to continue to manage by myself. However, my DH will do best if I keep him here until I can no longer do so safely. I will probably sell the house and vehicles when the time is right.

I’ve been trying to convert my thoughts from all the sadness and tears to something more productive. We have 35 years of accumulations, and my greatest concern is saddling my daughter with it. I try to declutter and reduce our inventory to a more manageable lifestyle. I will  play my piano more regularly, maybe learn how to play the violin, finish old projects that have been on hold, and learn to enjoy life more. I’ll try not to let all the evil, corruption, hatred and divisiveness in our chaotic world get me down. Caregiving is challenging enough and we need to keep as much of the outside darkness out of our lives so we can let the light shine in our hearts once again.

JoseyWales

I've been thinking a lot about this lately. And I'm afraid what will happen is that I'll become that cranky old lady who never leaves her house.

I have another 10 years before I qualify for Medicare, which means I'll have to work for another 10 years. So there's that.

I see nothing when I think of what I might do when this is all over.  I don't want to travel alone, although I'd like to travel. I can't imagine going out to do things alone, because I don't do alone very well. I have no desire to meet someone else, because I have no desire to ever share my life with anyone again. I like the little bit of freedom I have now, when I'm not working, visiting DH or driving to and from him.  But I don't want to be alone. 

I have a fully stocked quilt studio. I can't bring myself to quilt. Any hobby seems like a waste of time. 

My parents live very close to me, and I have a feeling I'm going to be taking care of them within the next 10 years. So, I see myself caregiving again post dementia. I just hope neither of them get dementia, because I don't want to do this again.

White Crane

Ed, I'm glad you started this thread.  Sometimes I think about what life might be like if and when DH is no longer here.  Mainly it occurs to me that he just might outlive me.  Right now I feel like I am being used up and by the time this is over there might not be anything left.  That said, if I do survive this, the first thing I would like to do is sleep and rest for awhile and not have to worry about anything.  Then I would like to start going for walks again...fast walks, leisurely walks to enjoy nature, contemplative walks.  Then I would like to go to Boston to visit my daughter and see her new house that I have never seen.  After that, I would like to pick up the pieces of my life and start seeing friends and enjoying the luxury of being able to make plans at will and become me again.

Rennbird

My husband died three years ago and was buried two days before the COVID debacle.  I periodically check this website because I wonder how the caregivers are holding up.  I don’t know how my recovery would have been if COVID had not occurred, but the experience was part of the recovery process.  I sat on my couch for almost 18 months and binge watched television shows.  My daughter lives with me and she began working from home.  One of the blessings was that because of the isolation, very few demands were made on me.  I did nothing productive for 18 months.  My cousins invited me to spend a few days with them in Montana and it was beautiful.  I went again last year and again the beauty and quietness were very healing.  I just returned from a 14 day Viking River Cruise with a girlfriend.  It was wonderful.  I think, if possible, a cruise or staying in a hotel for a week is a great healer.  I loved being waited on, have my meals prepared and served and having my room cleaned every day.  I had a lot of anxiety before going, but once I got on the plane I was fine.  Because we as caregivers are so other directed for so many years, the entire concept of being taken care of is a foreign concept.  Even if a cruise is out of the question because of health or finances, at least try to go to a hotel by yourself for a few days and order room service.   There is life after Alzheimer’s, but it is a different life.  Being a caregiver to an Alzheimer’s patient is a lot like being a POW and once you are released, I think it is helpful to take it easy and slowly re-enter society.