Feeling Conflicted and Guilty about moving on…

shark_guy

My wife is in the mid to later stages of AZ and is struggling to communicate, she sits quietly most of the time. In addition to AZ she has a genetic eye defect that is incurable, she is legally blind and needs help with everything. I am her caregiver and have given up most of my exercise and outdoor activities to support and care for her, I do everything in our household in addition to caring for her but I have found an excellent housekeeper. We are retired and financially secure so that is fortunate. We have been married for 54+ years and this process of watching her slip away is heartbreaking, I still love her very much, but the woman I married is pretty much already gone. I get so angry sometimes, not at her but at the sorry hand that she has been dealt, twice now. I know that I am stressed and am struggling to take care of me so that I can take care of her. I overeat and drink too much but I suppose it’s good that I at least can recognize that I have those problems. I need to get back to my exercise routine but it’s a struggle.

In addition to all the above, I am trying to plan what my life will be like going forward, her neurologist told me she probably has two more years left, but who knows. I am not putting her in a memory care home if I can in any way prevent that from happening, I am going to take care of her here at home and get help as needed because she can at least still navigate our home because she is acquainted with it. My newest dilemma is that I recently reconnected with a woman whom I worked with via a consulting gig that I work in occasionally. She is someone who I have always been attracted to but I have never expressed my feelings for her to anyone. To top it off, she now lives just a short drive away and the idea of going to see her is almost overwhelming. I am probably not thinking straight about this but the thought of spending my remaining years alone is not appealing although I don’t think I want another wife either but perhaps a life partner. I am torn between the love of my life who is slowly leaving me all alone and trying to make a new life for myself before it’s too late.

Home alone, Feeling Conflicted and Guilty…

Jean.

charley0419

Boy!!! I’m married 54 yrs DW and my journey is at stage 3-4 and not bad I don’t know how to address this, sorry ! Family and friends may look at different but do what your heart tells you.

M1

Welcome to the forum sharkguy (intriguing screen name!). There are many wise, kind, and experienced folks here traveling similar roads. I think your plan about keeping her home due to the navigation issues with her sight is very smart and compassionate. That is indeed a double whammy.

Regarding your personal life and a new relationship, it's no one's business but yours. Inevitably when you lose a spouse, you seek out new sources of support. What would your wife say? I imagine she would want you to go on living and be happy, that is what most of us wish for our survivors. If your new/old friend can also handle it and fully understands, it is up only to the two of you.

JDancer

Let me comment from a woman's point of view.

Dementia takes our LOs. They are gone. IMO, looking for a loving relationship elsewhere isn't wrong.

If I was the woman you're interested in, I would only ask you to be honest about your feelings and intentions.

Life's short, pursue happiness, it can be illusive when a LO has dementia.

trottingalong

Wonderful replies. I agree with the others, life is too short. You are being a wonderful, caring spouse for your DW. You are also alone. Humans crave companionship, someone to talk and laugh with. Don’t feel guilty.

trottingalong

CindyBum

I'm with JDancer; life is short and happiness is worth pursuing.

I've come to accept my little dating fantasies about people and work colleagues as a nice way to blow off steam of the caregiver stress. I have no intentions of doing anything about them, but they're a fun distraction. I honestly can't see past this caregiving time right now, so I'll take the little moments of dreaming.

pkovgolf

My wife is in end stage Alzheimer’s.

She has rapid early onset, which hit her in her 50’s :(

I ended up taking very early retirement, and loving my work, and not being prepared in any way to retire many years early, that was painful.

But there was no way I was sticking her in a care facility - especially after seeing so many people dying there during prime time Covid :(

But, I cannot imagine thinking it is ok to go date someone while you are still married!

Marriage is for BETTER OR WORSE. Alzheimer’s is the worst possible scenario - as a person loses everything, but continues to live. But they are the one you MARRIED and I hope loved unconditionally.

I know we live in a society where for many marriage is ‘disposable’ - Eg just get a divorce and try again, But, that is a truly sad aspect of society.

I have completely remodeled the home for zero threshold showers for ease of cleaning her, stair lifts, dynamic air adjustable pads for her bed and chairs, etc.

She cannot even communicate, and doesn’t remember our daughter, but one thing she still knows and randomly says ‘I love you’ daily too is ME.

Think through WHY you married your spouse. If it was for the right reason, spend the time you have left with them letting them know you truly do care for them.

There are many ways to have ‘fun’ that don’t require being with someone else while you are married to your spouse who is ill!

Joydean

Agree with what most responses have been. My dh is entering stage 7, he doesn’t know our children, he calls me “hey “ , don’t think he knows my name, he does say love you after I have put him in bed. But I know he would want me to be happy in whatever ever I choose to do. I said all this to c

jfkoc

I expect you are going to get responses...from go for it to you are going to hell.

I think what is important is living with as little regret as possible. You alone must make the decisions that you live with.

I do easily suggest that you become more active with your life. Eating and drinking are not the healthiest things to turn to. Find someone to care one on one with your wife at least part time and then get out with people doing things. You will find it will be a benefit to you and will likely make you a better caregiver.

Judith

mrahope

Hello, shark_guy,

You don't seem too much like a "shark" to me. FWIW, one of my DH's friends was in this exact situation. His wife developed dementia just as they retired. She rapidly became too ill for him to care for at home and she was placed in MC. He subsequently met a woman with whom he had much in common. He was completely transparent with this woman about his wife. The two of them formed a close bond and eventually lived together, though as far as I know they never married, even after his wife passed away. They were together for quite a few years and even visited his wife together at MC. His DW never truly comprehended their relationship, as I understand matters. So, I'm here to tell you that it can work for all of the people involved if honesty and caring are maintained.

YMMV.

Dio

Shark Guy, I think you already know what you'd like to do. You're just seeking confirmation, I presume. Let's say if the collective opinion is leaning toward the opposite of what you're thinking/wanting, would you be OK with it? In other words, if you flipped a coin and you wished the other side had been the one to show up, there--you'll have your answer.

It's your life. No one can walk this path but you. If you can live with your decision(s), so be it. Let there be no regrets, no stone unturned. Wishing you the best.

l7pla1w2

The relationship with the other person does not need to be sexual. Just having someone you can be close to, someone you can talk to, someone you can do things with, would be beneficial to your mental health, IMO.

Joydean

All this to say only you can and will make the hardest decision! God bless you in whatever you do!

ImMaggieMae

If you thought that trying to make a new life for yourself with another woman while your wife is still alive was the right thing to do, you wouldn’t feel conflicted and guilty about it or need anyone to tell you it was ok.

the bff

You might take a look at this video about two journalists - married couple - and their journey. He says: "before you judge ...."

https://www.cbsnews.com/news/jans-story-love-and-early-onset-alzheimers-20-06-2010/

shark_guy

https://alzconnected.org/discussion/comment/192594#Comment_192594

I appreciate your thoughtful reply and can’t argue with your points. I too have done and will continue to do all I can to support and care for my wife no worries there. This is a very difficult journey we are both on and I wish you all the best in yours. I don’t view my marriage as disposable as hopefully you can see from my post. However as some have told me, taking care of yourself and your life is equally as important as caring for a loved one, that’s a thought provoking idea to think about. No easy solutions to this dilemma we find ourselves in. All the best to you and thanks for the feedback.

Joe C.

Shark Guy, Welcome but sorry you needed to seek out our community. We are all on a terribly difficult journey and we each need to decide what is going to get us through and for each of us that will be different. You already know that overeating & drinking is problematic and if you continue down that road how will you be able to care for your wife. The best piece of advice I received on the journey was when the caregiver of my in person support group pulled me aside and told me, “dementia is going to destroy DW’s life and if I let it, it would destroy my life as well but that was my choice”. We each need to figure out what will get us through this be it counseling, religion, exercise, drinking, going to the casino or finding someone new in our life. For each of us this answer will be different but if it helps you survive this journey the then it’s the right decision for YOU.

JDancer

https://alzconnected.org/discussion/comment/192657#Comment_192657

IMO, he wasn't asking for anyone's permission. He's using this forum to share, vent and start a discussion.

Denise1847

Dear Shark Guy,

I second Joe C.'s comments. We all have to find a way to survive this awful disease. It is well known that the disease has immense impact on the caregiver and can shorten one's life. You are in need of support and you and need to find it to survive. No one should judge you,

shark_guy

Thanks to each of you who took the time to share your thoughts and comment on my post about moving on. Even the ones who were not so supportive of moving on were useful to read. But we all do move on don’t we, because time and this disease march on and there is no stopping either. Was I asking for permission to do something that some would take offense to? No, I don’t think that’s what I was looking for. I mainly wanted to get my thoughts in the open, out of my head and to talk to someone about them and express myself in a safe place. This forum has allowed me to do that and I am grateful, it helps to get it out where I can reread and examine my own thinking.

So what will I do next, I am not sure but watching the Jan’s Story video was helpful and when and if the time comes for me to move on with another partner, I think that video will help explain to friends and family what we caregivers go through from a relationship perspective. I know that I need to take better care of me, so I’ll see what I can do about that. Making new connections and having people to talk and visit with I think will go a long way towards easing this isolation that I feel.

Phoenix1966

If you have access to HBO/MAX, there is an older documentary “The Alzheimer’s Project” worth watching. In either the first or last episode, they had a segment where a woman’s husband was in a MC facility and he and another woman staying there had a relationship of sorts. His actual wife clearly still loved her husband, but was so kind and sweet to the resident who had “appropriated” her spouse every time she visited despite how hard it must have been to see their affection for one another. But she also recognized that the dynamic between her and her husband had transformed into something new due to his dementia. She loved him, was making sure he was cared for, still took him to occasional events that she knew he would love to attend and could understand, but also constantly reminded that she no longer had her old life partner any longer.

This disease turns everything on its head and challenges what we and those who might judge us consider normal or right. Only those in the midst of it all have an inkling of how lives are changed forever.

Make the best choices for yourself and your wife, regardless of what those choices look like to anyone else.

RickM

At the MC that my wife lives there are two "couples" that formed. In their cases it's sweet, harmless, and supportive. Having observed other "couples" where my dad resided I wasn't surprised to see it again. In fact, I made a deal with my wife before she moved: no new "boyfriends" for her and no new "girlfriends" for me😀😉😪

shark_guy

https://alzconnected.org/discussion/comment/192811#Comment_192811

Rick, From your emojis I think (and hope) you realize that those promises probably won’t be kept on her part because she probably won’t be able to remember or honor them at some point. After thinking long and hard about this I think it’s important to develop social connections for ourselves, that may mean making new relationships with women that may lead to a new partnership, I can accept that. I don’t want another wife but a life partner might work, living all alone with no female companionship is not very appealing, not to me. Good luck in your journey thru this process where we have limited control and choices…

ButterflyWings

Jean - Sharkguy I wish you all the best.

Your DW seems so fortunate to have your extraordinary love, commitment and care. IMHO, you should never feel guilty or conflicted on top of the massive negative emotions dementia caregiving and loss cause, through no fault of yours, or hers. Longtime member Crushed used to say here, NO GUILT. EVER. Unless you are abusing or neglecting your LO, which it is clear you are not. You/none of us has to neglect or abuse yourself too, as a further demonstration of your love despite dementia stealing your future together.

We matter too. I know that is mind-bending for some, especially after years of considering our values and the words said in vows literally. After 5 years holding on for dear life to survive this intense roller-coaster, I know first hand that "normal" rules do not apply to our situations any more. Not at all.

People must live on their own terms and consistent with their own beliefs. To judge or otherwise put pressure on you to meet someone else's expectations is truly wrong, I think. I feel you are 100% wise to do what will help you survive the loss of a love, and the terrible (sometimes fatal) toll it takes on the spouse caregiver too.

Yes, I'm sure RickM knew that Alz could not keep any promises, even if our LOs could remember the "agreement". I have previously posted the late Sandra Day O'Connor's experience in our shoes. She resigned from the Supreme Court to navigate her DH's dementia, only to have him bond with a "new wife" in MC after only a few months. She supported his 'happiness' but later shared how she regretted giving up her own life and accomplishments as his disease took him further and further from her and their marriage.

https://www.forbes.com/sites/nextavenue/2019/03/19/sandra-day-oconnor-and-alzheimers-a-personal-story/?sh=4369ccc86091

As for me, I do not have the energy or interest to take on anything other than working to support us, and caring for my DH at home as the primary in-home hospice caregiver with some HHA help. But if I did at some point feel able and interested in having the chance to love again since my DH is here in name only...with no chance of that changing, then that would be a blessing that should not be looked down on. Definitely not criticized by anyone (it is no one's business anyway). If we continue to prioritize our LO's comfort and care, I believe that is what matters most. I know for sure my DH would agree.

The reality is you would be taking nothing from your DW or your original marital dreams and plans. Alzheimer's is the thief. Not any other interests or person who may or may not find a place in my heart at some point. A huge part of me will always belong to my DH. That will not change. I applaud you and anyone else for choosing life, and that does not take anything away from your DW. Wishing you well. I am not there yet. May never be again as my heart is breaking here in early Stage 7 and I just want to spend as much time with my DH as possible. But it is not wrong to nurture that part of you that dementia will steal if you let it. Of this, I am certain.

upstateAnn

Go for it. You need human contact. You are living your love for your wife. Thymi’s ll that counts. However, since you said you are comfortable, find a therapist. This person can be a great sounding board. I have one.

RickM

Shark, indeed I was just being goofy.

On this journey it’s “whatever works”

Trying to find comfort and, possibly?, joy for both of you is the elusive goal.

wizmo

Also a bit conflicted about moving on, missing large parts of our marriage that no longer exist. Early in the disease DW told me I should find someone else when she is gone. I do not actively seek another partner yet. If and when I do, it will be with honesty about the situation, that I am still committed to DW’s care and quality of life (whatever remains) and she will come first.

In a normal relationship I believe one cannot truly serve the needs of two others. We are no longer in a normal relationship and there is a void to fill. So long as everyone is honest, respects prior commitments and understands there will be a conflict of interest, I would be open to having another person in my life - and care less what other people think especially those who have not lived through this experience.

toolbeltexpert

Shark Guy welcome to the forum and sorry you have a reason to be here.

So I will share my experience

First let me say my wife of 45 yrs passed away a month ago.

Your in the place where I was for several yrs. My dw had Alzheimers for 14 yrs and I had to place her in memory care for her safety and she was gone from home for over a yr and a half.

It's hard to just start at the end of this journey so I'll go back to when my dw and I had those "what if" conversations, ones where you discuss what if I have a stroke or become a vegetable talks. We both had said the other needs to continue to live.

They were emotional at that time because we knew the gravity of those conversations. Alzheimers was never discussed but it became my reality. It's one thing to say and another to be in that place and another to implement a plan when you get there. I never imagined for minute I would be in that place ever.

I say all that just as a part of my experience.

But over the years I became more and more isolated and realized I am going to have to start over at some time and some how, but how in this new world after covid and the digital age.

There are a range of emotions I went thru, I know what others have said no guilt! But the reality is you are going to have to work thru that and so many other things. I loved my wife and that never changed ever.

We had worked together our whole marriage it's never one or the other.

I want to say I had clear communication with my dw's only sister about what I was doing as well as my family and my church family. Even when I thought I was going to get very negative comments I never did! Of course many warned me of anything more than a friend.

And no matter who you connect with "they" are going to be thrust into your reality and it's not an easy go. Mostly because of the realityof "still being married." @crushed had a way of saying this and I believe this is a quote I got from one of his posts and if I am wrong

I apologize in advance.

"I always say I am married De jure (legally) but not De facto (in reality)."

But It's the "in reality" where things get hung up so to say. I felt like I was in no woman's land! My take on no man's land. Damaged goods maybe!

I started dating on a dating app and was very open about my situation.

With each connection I would inevitably get to a place where the lady would finally say they didn't want to invest in a relationship not knowing how long!

I was hesitant to post about this in the past but did, and I find much of the same advice is being given that I received. I do not regret what I have done. It's my journey and my walk with God not anyone else's.

This is a public forum and I expected I will get responses from all points of view and I need not defend myself.

I do have the comfort of knowing my wife's wishes.

Life is short my friend and I chose the path less traveled. Your journey is yours it is not going to be an easy go no matter what. I chose not to let Alzheimers take two lives.

I hate Alzheimers.

To all my forum family I send my love and still remember you all in my prayers you were always there for me.

Happy New Year! If that's possible.

Stewart

shark_guy

https://alzconnected.org/discussion/comment/193153#Comment_193153

Stewart,

Have you been reading my mail !??

If not, then you must be telepathic because your comments hit home, thanks for taking the time to share your story and insights. I am fairly certain that I will seek alternative female companionship at some point but for now other than trying to reconnect with friends and acquaintances in order to keep my sanity, I have decided to “date” my DW and chat with her more even though after 54+ years we have already said it all. Still, I am finding ways to engage her and get reminded daily why I love her so much. She still makes me smile. I’ll attach a photo of her in her New Year’s party hat.

So sorry for your loss and all the best with your personal Moving On.

Jean.

Paris20

My husband is close to, or already in, stage 7. He was diagnosed with AD in 2015 but then had a paralyzing stroke in May, 2022. I had no choice but to move him to a skilled nursing facility since his condition makes it impossible for me to care for him at home. In September we will have been married 60 years.

It took me awhile to find my way through this. That time included my hospitalization because I was not taking care of myself. I thought I could handle everything. I was wrong. I visited DH every day at the nursing home for months. Then I decided to take charge of my life. I returned to workouts, lost all the weight I had gained, and limited my visits to twice a week.

My point is that you cannot “fix” this disease through martyrdom and self destruction. My husband knows me but has forgotten my name. He immediately forgets my visits. I read, watch movies, work out, go out with friends. I have found what works for me. We each have to discover what brings us peace and acceptance.