So Where Do We Go From Here? This is an old thread revisited
Originally posted Jan 4.
There's a number of us here dealing with spouses in stage 7 and a few folks still hanging out who are now in stage 8 (spouse has passed). I'm hanging in stage 7, my wife's in MC, so I have time to think about what's next, i.e, what am I gonna do when I'm in stage 8, and my spouse is no longer in my life.
As of yesterday, August 18, I'm now in stage 8 so I've added a comment below the original comments in January.
I had a great 40 years with my wife. We met at the right point in our lives, had of a shot gun romance, moved away from our families (mainly because I wanted to live in the northwest) and lived a great life. Furthermore, we eventually were blessed with a son who is a great person. We retired early. And then Alzheimer's hit. First my mom and then my dad. Now my wife.
I can see the end in sight for our life together and that now I have to figure out what's next. I've got plenty of hobbies, plenty of friends, and plenty of ideas, but, I'm finding a lack of motivation.
So I figured I'd throw out the question: What are you that are in stage 8 doing or want to do? What gets you motivated to get going on that "new life"? And for you folks still in stage 7. What are you looking forward to? Or, are you, like me, not quite sure what will be next.
I have this feeling that I've done what I've wanted to do so I'm having a hard time getting motivated to figure out what's next.
And, yes, I feel very fortunate and am grateful for the life my spouse and I have had.
Let's make this an exercise to make us realize that there is a life beyond "Dementia Land" and to start making plans for what we'll do once we get there. Maybe this will make the journey a little less burdensome.
I'd love to hear your plans.
Rick
Comments
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I have no idea. Will be watching this thread with interest.
On the practical side, I am so far behind on just about everything, it will likely be some combination of
- trying to retrieve some of the projects, activities, and responsibilities I've totally dropped in favor of only what's most urgent each day;
- finally clearing a path in my/our home after years of neglect due to the intense demands of a primary caregiver (and aftermath of actually hiding things from rummaging eyes and hands for years); and
- hoping I have the energy and enough assets left to make time to grow while grieving, to heal, and find the new "me" who has survived the brutal disease of my beloved and is able to make a new life (solo is fine).
- Just for today, I mainly want peace, health, and freedom from constantly trying to avert the next disaster.
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Great question Rick. Our timeline was 30 years, not 40. I will face the challenge of downsizing and selling our farm, because it will need a new steward and is not practical for me to age in place. A romantic piece of me would love to move away and start over somewhere new-primarily to right some old wrongs and errors in judgement. But i fear that may prove neither wise nor feasible, so where I'll end up is very up in the air. And what i will do with that time-many things i hope for, health willing, including possibly some volunteer opportunities. I'd love to do Doctors without Borders but don't know if my health will allow it. Undoubtedly those granddaughters will figure into the decision. Possibly my son's plans also, as it appears a wedding is now in his future too. Almost easier to say what i don't want: while i crave friendship I don't envision another relationship, and i don't want to be a caregiver again. I want to land somewhere easy to care for and that will minimize the burdens i put on my children later in life. A CCRC perhaps?
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My hubby died just weeks before the COVID-19 shutdowns started. That was fun (NOT!!!!). I had thought about what I would do once he was gone. Almost nothing that I thought I would do has come to pass. I did start an Alzheimer’s/dementia caregivers support group at my church. It's small, but it is meaningful. I have spent more time with my family (four children, two granddaughters, two brothers and their kids). I just let the Lord lead me. He knows where I'm most needed.
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As my DW begins to tiptoe into Stage 5, I already find myself thinking about what I'll do next. I know this is an utter fantasy and partially delusional of me. I have years ahead with her decline and that's really what I'll be doing. Apparently, I need to find these little escapes to the daunting path ahead for me.
So far, I see animals and fostering them in my future. I'm a former D1 athlete and think working with young women interested in sports could be something. I imagine traveling and know I can do that alone, but don't really enjoy that as much. I have several friends who never married, so could have some travel partners. That's about as far as I've gotten.
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I am a little over 8 months into stage 8. Prior to DH's passing, I hadn't given much thought to what the future in Stage 8 would look like and even less thought to planning for myself in Stage 8. I guess I was too busy trying to keep my head above water after caring for DH at home 24/7 for 11 1/2 years. Once he was placed in a MCF, I had some time to ease into stage 8. I appreciated the luxury of being able to leave the house for an appointment, lunch, grandkids' activities, shopping, etc. without having to make detailed plans or just forgoing the activities altogether. For 17 months, he was 40 miles away, cared for by others and yes, there was definitely a sense of newfound freedom. He hadn't known me or any family members for some time prior to placement; he slipped away little by little by little and still, I didn't plan or look forward to Stage 8. I just existed - - a visitor, his wife, maybe a familiar voice.
So here I am. With his passing, I no longer travel weekly to the MCF to hold his hand, feed him, shave him, stroke his hair.......and truth be told, not much has changed in my life. At 77, although I am physically healthy and fairly active, I enjoy the simpler things in life that, had DH lived, we would most likely share together. (Except for golf- - my knees are wonky.) I enjoy the grandkids and their activities, traveling to visit the "out of staters", and above all, our little beach house at the Jersey shore, although spending time there will never be the same again. I would like to think that having had a great life with DH for over 55 years, with no regrets, my life is complete; I am content and at peace. I would wish that for all my forum friends.
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This should be quite a thread. My wife passed more than 1 1/2 years ago. It seems that everything I did in my life was for her or with her in mind. I built a 15X28 foot rec room on our home, and I loved doing it. I did the hard work so she could have nice beautiful gardens. She was the gardener. I built some furniture for us. I loved doing it all. Now that she's gone, I have almost no motivation to do anything anymore. I don't want to travel or work in the shop. I don't feel as though grieving is holding me back, but I have no interest in anything except for a 3 month old German Shepherd puppy. There should be more to life than that, but I feel like my life is basically over, even though I think I'm in better shape than most others my age. I still have the tools to build with, but no motivation. It's not what I expected.
Our 66th wedding anniversary was on Dec. 28, and I visited her grave site to wish her a happy anniversary. There was a light rain while I visited, and that seemed to match my new way of life. When you reach stage 8, I wish better for you. Sorry I couldn't have been more positive.
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Rick, We are both in the same point of the Alz journey, DW is in MC and at stage 7. Even though she is at stage 7, she is otherwise very healthy and I believe this journey is going to continue for quite awhile. I visit her 5 days a week even though she is mostly nonverbal and no longer know who I am, but she still loves to dance when there is music and I feel dancing is our last connection.
The one thing I will do is sell my house and buy another one. We purchased this house in the very early stages when my DW was still functioning. This was the house of her dreams and it worked great for us as the disease progressed. We had moved from a two story to a single story house, from a heavily traveled main road to a cul-de-sac and to a neighborhood where we have great neighbors. All these things made caring for DW as the disease progressed much easier, especially when she began wandering. But for me there a very few happy memories here and many, many ghost of the Alz journey. I can’t see myself living in this house with all its difficult memories, I feel I need a fresh start.
DW & I planned on traveling extensively when we retired. Although we did get some traveling in during the early and mid stages of the disease there is still many unforfilled destinations on our bucket list. If the MC does not take all our funds, then I will travel but I will sorely miss my traveling partner.
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Hello to all.
I am about 10 weeks into stage 8, so pretty new, but can share a few things. I was sole caregiver, 24-7, had minimal outside help, and was also working from home and, as we all know, was managing every aspect of our daily lives. My husband died at home, and the back portion of the house had become a hospital setting, so there was a lot of work to do to change the atmosphere around here. The energy required after all those years of sleep deprivation was a big push, and i had a lot of adrenaline working to make things happen. I'm still sorting through all kinds of things, finding lost objects, searching for items that I had to hide (still can't find the remote for a BOSE cd player that I bought for him, which he never used) Truthfully, I think I threw it away in one of my kinetic episodes.
In addition, in order to be able to afford to remain in my own home, I've rented out the upstairs , which is working out, and helping to reduce my stress levels.
So, that describes actions taken, but feelings and state of mind are another matter. Emotions have run the gamut from feeling relief, getting angry, feeling nothing, feeling sad, feeling socially alienated, the list is endless. I have a hard time remembering the person I married. He left a few years back, and this other guy moved in who didn't have a wife. So only recently am I beginning to have a flash of a good memory, and i'm thankful that these little vignettes are popping up. I was beginning to think that all had been erased from my brain as well as his.
Plans for the future? Well, I'm taking better care of myself, paying attention to my appearance, getting enough sleep for a start. Forcing myself to get out and socialize , and believe me, after so many years of relative isolation this feels weird. Fortunately I enjoy my own company, love reading, playing the piano, singing, and teaching others to do the same. I do want to travel a bit, and i'm lucky to have a daughter to accompany me, so maybe a trip in March... we're in the planning stages.
We all handle grief differently, and just because we don't appear to be falling apart, doesn't mean we are un feeling. I get this vibe a lot from some family members who are more demonstrative than I am. My advice so far is to listen to your SELF. Grief counseling can be very helpful, and whatever you are feeling or not will be validated. Navigating the waves of time is a slow process and right now I'm just drifting along.
Peace in the New Year,
Maureen
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There are always a few threads here on caregivers' attempts to move on, particularly before their SO has passed. I haven't been able to get there. My DW is well into Stage 7, on hospice, non-ambulatory, and needs hand feeding. Yet the RNs who see her regularly always report that she is "otherwise" pretty healthy (however that can be considered possible). So, will she live another week, month, year, decade? Very few here seem to have lost their LO as a direct result of dementia itself (BattleBuddy comes to mind), as opposed to collateral issues such as pneumonia or heart issues. But that is where DW seems headed.
This makes any fantasizing about the future pointless for me. DW and I have been together for 50 years and were each our first and only loves. Although I know that at some point, I must carve out a solo life, pondering it holds little interest to me, I think I'll just wait until the time comes to deal with it.
In the meantime, I plod aimlessly through each day, with a routine of exercise and a healthy diet, so that I can continue to support her in her MCF and advocate for her as I can. I'm trying to keep up with cleaning and repairs on our house, but I do it begrudgingly. Travel, socialize...not yet for me.
I am truly glad that there are those of you who can plan for a brighter future, and maybe one day I'll join you.
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I’m not close to this stage yet but years ago I worked in a small shop and a man came in who lived 500 miles away. When I asked him what brought him so far from home and he said his wife had recently died after his taking care of her for 10 years. He said while he was caring for his wife he would dream about the places he would travel to when his wife no longer needed him. He then said since his wife now no longer needed him he was making his dreams come true.
I would love to do as that man did but worry that by the time I reach stage 8 I’ll be too old and lack the motivation to do the things I dream of now.
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I am not there yet but I can't imagine ever being as close to my adult kids as I once was. Some of them have not been supportive at all. I have done a lot for them, but they are absent during all this. That makes me sad,, but I guess it is just another casualty of this disease. My wife just wants to be home with no excitement from grandkids visiting and as time goes by I am becoming comfortable not having those relationships. I have thought about what's next, but I have no idea what it will be.
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We are in early stage 7. He has double incontinent, First of December he had a mini stroke, which has affected his left arm and the left side of his face. He can use his hand a little, but for the most part it just lays in his lap.. conversation. Sometimes it’s like playing charades. He will use his right hand to make little signs and I try to figure out what he’s wanting to say not a fun game.. sometimes he can use his right hand to pick up the food with his fingers. Can’t use a spoon. Any utensils. I get him up in the morning and get him dressed, and he sits in his chair watching TV all day of course only watches old westerns he can’t follow the plot, will watch the same ones over and over like their brand new.. I can’t even think of what I will do when he passes. At this time, I only thought is, will I be able to sleep through the night? That’s my big ambition to be able to sleep all night soundly. Working in my gardens but I haven’t been able to do that for a couple of years. I know that doesn’t sound like a big ambition but for now that’s all I can think of doing.
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Great thread!
I cannot even begin to imagine freedom yet. I used to be able to, but the longer caregiving goes on, the more I have adapted. True freedom is unimaginable to me now.
My wife and I have been married for 28 years, the last 8+ years tainted by dementia.
I do know that I will not be looking for another relationship, marriage or otherwise. Once and done. If I am ever granted the gift of freedom again, I will savor it each and every day. The world will be an open book again, with endless possibilities.
That is, if I live long enough to emerge on the other side of this nightmare.
Stay strong my friends!
Bill_2001
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Joydean,
I so get what you're feeling. My first thought when DH died was about getting a full night's sleep! I am grateful every day for the precious time i have to myself, and I wish the same for you.
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I think about that almost every day. I only hope my health will hold up so I can eventually answer that question. A lot I would like to do, mostly enjoy quiet mornings with coffee, quiet days and quiet evenings without having to worry about being a caregiver. I'd like to travel a bit, IDK I want to feel free but at the same time I also realize I will be very lost for a while.
Sell the house and downsize to small place I can pay outright but more than likely I'm going to feel much more lonely and lost than I realize and not do much of anything as far as what might be on my bucket list. I don't have kids of my own so I'll be completely on my own. Part of me looks forward to that and the other part doesn't.
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I lost my wife 16 months ago. She had early onset Alzheimer's that took her life after 31 years of marriage and roughly 7 years of me being her 24/7 caregiver. I used to try to imagine what I'd do after she died. I have to say that this has been nothing like I imagined. Much of the first year has been like others have said... Terrible sadness, incredible emptiness, no motivation, and kind of feeling like I was paralyzed in some ways.
But I'm doing better now, feeling better. Not great, but better. Absolutely nothing is like it used to be, and I doubt it ever will be. That's hard to accept. I used to empathically say that I never wanted another relationship. I wasn't looking for it, but I recently did end up in a serious relationship; however, I ended it because it just didn't feel right. I will always love my wife and feel as though she's still with me... even though she's gone. I'm pretty much a loner, I haven't reconnected with lost "friends". I'm slowly getting back into some of the things I used to do, like fishing and hunting. My parents are still living and I've enjoyed being able to travel to spend some time with them. I also spend more time with my two kids. Otherwise, it's just me and my dog. I do think things will continue to get better.
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My husband passed two months ago. He had been in memory care for a year and a half so I had time to decide what I wanted to do. I love my house and my town so moving was not an option. Our friends were couples so I made a conscious effort to meet new people. I landed in a group of 20 women who are either single or widowed and they have been my lifeline. I go for lunches, walks, kayaking and blues venues. I have even taken some trips with them. It has been strange because my husband and I rarely even traveled with another couple let alone shared hotel rooms with people we had just met. I talk to my daughter daily and his illness brought us closer. I have a support group that has a fluid membership. In Nov and Dec four of us lost spouses. I will keep on but most won’t. At the same time we have two new members who will be joining us in two weeks. I definitely do not want another relationship. I would love to add men into my friend group but strictly as friends. Whenever I get depressed I remind myself of what I do have and I can pull myself out of it. I miss my husband a lot but I miss the man he was not the poor soul sitting in a wheelchair who didn’t know anyone and could no longer speak or walk.
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I am sorry to read of your DH’s passing. I must have been under a rock and missed your post at the time, if you did post. I would think of you often, as well as of others whose LO’s were in placement.
I am happy to hear that you are doing well and beginning to enjoy life again, in spite of your circumstances. I agree with so much of what you’ve posted. We (you and I) had a bit of time to ease into Stage 8, and as much as I love and miss DH, I am grateful to have had the outlet of grieving along the way. It didn’t make his passing any easier, but I had a little breathing room to plan and prepare. I am thinking of you and praying for you as you go forward.
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It will be six weeks tomorrow that DW passed (but who’s counting). We had 40 years together, the last 7 on the AD journey.
I can’t say I’ve adjusted even a little. I found AD to be an incredibly lonely experience. Guess what? Stage 8 is lonely, too.
This house was always big for the two of us. It’s flat out ridiculous for me (and the dog) but the kids think of it as home and were all here with spouses/partners and pets for Xmas. Do I stay or do I go? Too early to decide. Where would I go?
Travel was mostly on hold for the last five years, and I’d like to travel again, but I think the joys of travel are a lot about sharing one’s experiences with one’s fellow travelers. I don’t know how to travel alone. Perhaps I’ll learn.
Freedom? Oh yeah I’m free. But free for what? At 66, I don’t relish the idea of spending the rest of my life alone. And I’m confident my DW woudn’t want me to be alone. But how to rebuild a life? It’s a work in progress, and not much progress, yet. Early days, I know.
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Very early days Jeff.
I've started a list of things i might want or not want in a new home. Kinda random, but it's an exercise in speculation. It's a short list as yet-but no stairs is on it, for instance. Great kitchen. walk in shower. I just add things as i think of them. It is hard to think of moving when the kids and grandkids love it-my four year old granddaughter said recently that she "just loves being a farm girl.". But 150 acres is ludicrous for one person and one dog.
I actually love to travel alone or as part of a group tour, if the destination interests me-might end up being a nice way to meet people.
I bet you'll figure it out. Dogs are good company and I hope your (?girl?) Is holding up. Nature, time, patience will do their healing work.
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Thank you to all of you. Many of your responses brought tears to my eyes. I now have a better understanding of my difficulty in finding motivation to move on. Not only do we suffer a terrible loss but we have to endure a terrible experience.
Thoughts and prayers to all of you. I hope we all find something that will help us survive.
And, Ed, who says there needs to be more to life than caring about a 3 month old German Shepard Puppy? I don't know, but it sounds like a good place to start.
Rick
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Well as of today I am in stage 8 so I went back to an old thread that I started about that very topic.
It's just day 1 so I'm just getting started.
I'm glad to be done with life in Dementia Land (at least as a caregiver 😳??) I've lived through supporting both of my parents and then my wife starting in 2016. So not that long in comparison to some of you. No the "Cavalry never showed up" but I did have support from family, friends, strangers, and caregivers. I am grateful for that. But as we all know it is a difficult journey and one that we make mostly on our own. It can be somewhat isolating but after dealing with my folks I knew that I needed to prioritize self care when it became time to deal with my wife's dementia. I've been somewhat successful with that. Please do your best to take care of yourselves on your journey. We can't let this horrible disease take down us, the caregivers of loved ones, too.
As for what's ahead in stage 8? Too early to say but I am looking forward to it. Sure, I'll be continuing to deal with the grief of my loss but I feel that it is going to be different. There was some sense of freedom when I moved Melissa to MC 15 months ago. There will be more freedom now.
Living in Dementia Land I learned to live one day at a time. I'm going to continue living that way. I'm happy in the house we have lived in for 38 years and don't plan to move until I have to. My son and I are closer than ever and I'm looking forward to his wedding next month. It will be nice to break away with him and his wife on occasion, maybe re-visit some of the places we went to when he was a kid and reminisce. I can get back into some type of routine and work harder on maintaining my health. I'm looking forward to getting away on trips again, something that has a big part of our lives in the past. Alas it will be without my primary partner. That will be difficult.
Mostly I'm just looking forward to finding more joy in my life once again. This disease stole a lot of that. But I did find some joy in doing the best I could in supporting my loved ones. I hope all of you can find some of that too. We need it to survive this horrible journey.
Thank you all for your help, support, and love along the way.
Best wishes and take care of yourselves,
Rick
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Rick, it is good to read “I did find joy in doing the best I could…”. I believe that, too, God gives me patience and insight when mine is worn thin. I take comfort knowing I will remember this journey as one where I gave support to DH. It makes the negative days have a bright part!
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I am sorry for your loss. Be kind to yourself!
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condolences Rick, may stage 8 bring peace. You were a wonderful caregiver for her.
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Rick—
I am sorry for the loss of your dear Melissa.
HB0 -
So, so sorry to hear of the death of your dear wife. I think we all believe that suddenly the clouds will part when we exit Dementia Land, but I understand it's not that way. Wishing you peace as you discover what's next.
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Peace for stage 8 and I hope you have a wonderful time at your son’s wedding .
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Rick, I'm so sorry about the loss of your wife. I wish you peace and joy as you move forward.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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