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My husband is 79 and has dementia. I am 68. He's at the end of the moderate stage and entering the last stage. Our marriage was never a great one and now I find myself waiting on him hand and foot. He doesn't want me out of his sight and yet there's nothing there between us nor has there been for decades. I am lonely and want companionship. I don't know what to do. An old flame from High School has been contacting me and we have feelings for each other. No matter what, I want to care for my husband until he finally has no idea who I am or becomes so dependent he'll need additional care. Are there others out there like me? What have you done to help the loneliness?

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I am 63 and lonely.

I have cared for my husband through so many sicknesses and have become nothing more to him than a caregiver. He is currently on day 6 of a man cold. I have waited on him hand and foot b/c I do care about him and I wish he'd get up and go to work, but that ain't happening!

My marriage vows did NOT include the words "in sickness and in health". But I stay and stay.

I've officially done MORE for him in the last 6 days than he did for me during an 8 month long cancer battle last year. So I KNOW if I get 'sick' enough, he will plop me in a NH and that's that.

New year--new resolves: I will take care of him b/c he is my husband. I respect that bond, even tho I never promised to--so to speak. He is approaching retirement and plans to do NOTHING. He wants to stay in bed until noon everyday and then take long baths and watch TV. Doesn't that sound awesome?

I'm going to start traveling a little with my sister. I am reaching out to make new friends (not easy when you are basically very shy) applied for a small PT job which I hope will get me out of the house and my head for a while each week.

Also have someone from many years ago who is divorced and VERY interested in creating a relationship---but I don't engage with him.

I guess, just finding who I am. The cancer will return, who knows when, and I want to have done something with my life besides take care of a sick hubby and raise kids.

Hubby does not have dementia, but he is deaf and gives the impression of being not 'all there' due to the fact he often forgets his hearing aids and also doesn't care about what people are saying.

I often look at him and think "who IS this man? And what happened to the man I married, who was SO full of joy and life. He is 67 and looks and acts 80. Sad.

We have so much love and joy in our lives and he prefers to sleep, nap and 'doze' when the g-kids are around. Sad, just sad.
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Reply to Midkid58
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It could take a very long time for your husband to not know you. You have this friend now. I would suggest you keep it as a friendship though, if your friend is willing to do that, not because of any moral judgement, but rather that entering a romantic relationship in your current situation could cause you even more stress with your aliances being split. That said, it can be very helpful for your mental health to get out and be with someone who has the capability to care about you, what you feel, what you desire. Laughing, talking, hugging or sitting together at movies or concerts, as long as you both stay clear as to what you are doing, all is fine. In fact, whatever you do about this man is absolutely fine. Just get yourself out of the loneliness!
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Reply to ArtistDaughter
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Personally, I would not desert someone that I was married to on account of this disease regardless of what the marriage was like prior to illness. If it was bad, you had xx number of years to leave him but clearly did not. To do so on account of this seems....icy. I respect that you want to care for him until the end, be it in the home or even after he goes to a care facility, which is likely inevitable at some point. To commit to doing so is covering the “in sickness and in health” concerns in my opinion.

”Till death do us part” is obviously murkier. If he had cancer, I’d be uncomfortable telling you to begin moving on & rebuilding YOUR life. It (cancer) will either be terminal or it won’t be....and you’ll still be married if he lives. But with dementia....depending on the severity, the individual you chose to marry and stayed married to is not there anymore in body or spirit, is he? He is also certainly not coming back from this; it’s matter of time and an undetermined amount of time, at that. While I am not in your situation, it seems to me that a terminal disease (and ensuing death) has already parted you and for certain, he isn’t coming back from this. I find I am not uncomfortable with this if he is that far along.

I don’t know if you have kids. From that perspective, I’d be uncomfortable and resentful if either parent started seeing anyone else while the other parent was cognizant and aware. If he is long past this point, as a daughter, I’d be happy to see my parent move on to rebuild a life, so long as s/he continues to be dutiful and look in on the other parent and the new partner understands this fully and that is it non-negotiable.

Just my two cents. I hope you find the answers you’re looking for. I can imagine it is a lonely existence, but it should also be temporary, I hope.
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Reply to KoreanDaughter
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Go for it. I'm in the same boat as you. But, reading about so many people who are totally miserable and tied down being a caregiver, has made the decision for me. I am not going to spend the rest of my life or my wife's life spending 24/7 caring for someone who doesn't know me, doesn't appreciate me, and doesn't even want help. Her mind is somewhere else and definitely not the person I married. We have had 'the discussion' a few years ago about this. So I am actively looking for a place where she can be cared for and be happier. This may seem mean, cruel, and immoral, l'm sure will get negative responses, but one life is ruined by this disease already, don't make it two. Go ahead and make yourself happy and without guilt.
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Reply to nottooold
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NeedHelpWithMom Jan 2, 2020
I agree that sometimes we reach a point of agony where we must save ourselves. I love that you have shown total honesty in your answer.

I am quite sure that you did not make this decision overnight. I doubt if anyone does. But at the end of the day, we have to do what is right for us.

It’s called being true to ourselves. Why do something if our heart is no longer in it? I think everyone starts out with the sincere desire to be there for their loved one.

Unfortunately, that isn’t easy to do. Staying and just going through the motions is hypocritical and perhaps false compassion, right? How is that helping anyone?

I admire you for choosing to save yourself. If others disagree, well so be it. Have they walked in your shoes?

Every single person is an individual with their own individual circumstances. Some feel the need to be a caregiver until the last breath a person has.

I respect a person who truly feels they must be a caregiver in their heart to do so. They have the right to choose that. There are special people who can handle it.

Others cannot handle it and are not any less special in my opinion. They simply are different from those who are able to cope.

Even people who can cope with the enormous difficulties of caregiving have their struggles. You simply can’t sacrifice yourself without paying a price for it emotionally and physically.

I pray that everyone who chooses caregiving makes sure they take adequate breaks for themselves and the person they care for because a burned out caregiver is of no use to anyone.
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Lealonnie thank you for being the voice of reason.
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Reply to elaine1962
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Circumstances change and the dynamics of a marriage changes. I have empathy for your situation. I would encourage you to seek friendships. If you feel like the marriage is over or that you can no longer be committed in your relationship it may be helpful to talk about your situation and your future with a therapist.

No judgment. Any relationship changes whether it’s husband and wife, parents and children and we have to sort out our feelings. If we are unable to resolve it on our own it does help to speak to a professional.

Loneliness is difficult and can become miserable. We become vulnerable in this state and it’s wise to get a handle on the situation to avoid any further complications from occurring.

I do know people who jumped into relationships and were sorry that they did. Yes, they were lonely but they weren’t emotionally ready for a new commitment. Sometimes others expect more than you may want to offer so that has to be established from the beginning of any new relationship.

You’re not alone. Others have experienced what you are dealing with and may share what has worked for them. I know that I experienced many emotions while caring for my mom. I felt isolated, lonely, depressed and had anxiety. I get it and those feelings are not uncommon.

Please don’t feel embarrassed about expressing what you feel. You’re not a horrible person for wanting to share your life with others.

Best wishes to you.
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squee2000 Jan 2, 2020
What a lovely response. Well thought out and beautifully expressed. Caregiving is such a tough haul. Everyone's circumstances are different. It seems to me that the common ground we all share is the physical and emotional toll. Any reprieve from that should be welcomed.
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Why say the vows if they're not going to be followed? The other gentleman should step back knowing the situation.
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worriedinCali Jan 1, 2020
Who said a relationship with the other gentlemen isn’t following the vows? You have no idea what vows the OP took when she got married. If you used the traditional
vows yourself then YOU Might want to go read them and refresh your memory, just saying ;)
because those of you act holier then thou and like to throw out this kind of garbage response have clearly forgotten what exactly those vows say.
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You know, caregivers sacrifice everything and I mean everything for the ones they are caring for and does it really help their loved ones? Most likely not if their medical situation is progressive and terminal. I don’t mean to sound cold but who really wins? The caregiver is drained, lonely, depressed, full of anxiety and sometimes develops health issues of their own. So, is it worth it?

It depends on finances if a person can afford a facility such as assisted living and sometimes they do not qualify for assisted living. There can be issues with attaining Medicaid so it’s complicated for some to be placed in a nursing home. They end up being stuck as a caregiver. Other than making them a ward of the state, what’s left?

It’s so hard being a full time caregiver. No one understands this unless they experience it themselves. Some people simply aren’t able to emotionally deal with it and when people place guilt on them it’s even worse.

If I could go back I would not have been a caregiver. It’s one of those situations where I became overwhelmed and blinded by it. It took me stepping away entirely before I truly saw how emotionally damaging it was for me. I pray all caregivers get respite care and are able to place their family members in facilities if desired.
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DollyMe Jan 1, 2020
I agree, until one has been faced with caretaking they have no idea what it entails, I lost myself, I gave up me for my husband and really nothing positive was accomplished. Never again, I will let the professionals deal with it and that is what I am doing with my LO's today, I am sane and they are happy and taken care of 24/7. It is a win, win!
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You're likely to get lots of negative responses here...........I've seen it before. MANY times, in fact. You know, the 'in sickness & in health' and 'till death do us part' statements? You may even get some bible quotes thrown in to make sure you feel guilty if you even CONSIDER stepping out for an evening!

Let it all go in one ear & out the other and do as YOU see fit.

You're not dead yet. You're still alive and caring for a husband who is reaching the end of HIS life. Please consider placing him in a Memory Care community now because the end stages of this dreadful disease can be TOO MUCH to deal with at home.

Wishing you all the best.
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Reply to lealonnie1
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In sickness and in health. Your husband didn't choose to have dementia. If you are lonely, get some respite help. I think there is a slippery slope reconnecting with an old flame at this time.
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worriedinCali Jan 1, 2020
The OP can still love and care for her husband in sickness and in health. In sickness and in health doesn’t meant you stop living YOUR life When your spouse gets sick. SMDH. In sickness and in health doesn’t mean you have to sacrifice your soul providing hands on care for a spouse with dementia. Just shaking my head at the martyrs here.....
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Even people who have had good marriages find taking care of a husband with a Dementia very hard. They are not the person they married. Its caring with nothing in return because they no longer can express love.

Maybe its time to have him evaluated for LTC. You could become the Community Spouse and apply for Medicaid for him.
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Reply to JoAnn29
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Perfect answer dollyme!!!
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Reply to elaine1962
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Yatzeedog, you need to get out of the house and socialize. Nothing wrong with going out and socializing with an old flame. Hire caregivers to come in and give a respite or place him in a facility. Be happy and lead your life. We are only on this earth a very short time. Why spend each and every day miserable?
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pvw1948 Jan 1, 2020
Thank you for your advice. I am also feeling exhausted from caring for husband in Long Term facility. He asks every day to go home and has lost all feelings for me and family. I pray every day for strength.
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Yatzee, are able to get away on your own for hobbies, be they sewing, gardening, whatever? You will have to be creative. I don't know, I like to sew, garden, read, craft, listen to podcasts, and though I am not doing hands on care I don't seem really to get bored.
You say there have not "been feelings" for a long time, but that you do feel you want to be caring for him as long as you are able. Given that I do not myself see a problem with you having a platonic friendship with this other person, an online friendship, or whatever. That should be a part of your life, and your lives have probably been quite separate for some time.
So sorry you are going through this.
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Reply to AlvaDeer
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Oh, Yatzeedog123,
You are one of the good ones.
Don't let a chance for pleasant companionship pass you by during this difficult time.
Please, see a professional, get clarity, give yourself permission to be happy.
I wish you well,
R27
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Reply to Ricky27
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Your marriage was "never a great one" so why do his wants, which are irrational because his brain is broken, matter more than yours?

You want to not be lonely. There's only one way to do that and that is to get out of the house and be with people. Whether those people include your old flame or not is irrelevant.

If you continue to sublimate your own needs to the whims of your husband's broken brain you will continue to be lonely. If you want to not be lonely that starts with deciding that you matter and that your need for companionship matters enough to you to go out and seek it. It's not going to come to you.
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Reply to NYDaughterInLaw
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shad250 Jan 1, 2020
Sickness and health
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I am one of those people...you know the kind...one that says...I would consider placing him so that you can start enjoying your life again.

My husband had cancer, I worked and continued to work...a long haul of 12 years...he got to the point that I could not leave him alone (dementia), so I hired a care taker, worked for awhile, then no one was getting any sleep, so I moved him and a 24/7 nurse to one of our rental properties, that lasted about 5 months, from there he went to hospice and died shortly thereafter.

I would never care take in my home again, knowing what I know now, for the last 5 years of his life I would have placed him in AL, a place with a step up program, next MC, then in facility hospice.

Basically, I had no life, my home looked like a medical ward, my friends all deserted me, I was a wreck. I was never cut out to be a care taker, I actually knew better, but I gave it a shot anyway, bad decision for all concerned.

You can care for your husband at an arms length away, he doesn't have to live with you. Take care of you, you are entitled to a life!
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Reply to DollyMe
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Being a caregiver is isolating. Hire someone to stay with your husband and take a break. You can’t take care of your husband if you are exhausted yourself.

Sending hugs your way.
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Reply to NeedHelpWithMom
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Yahtzee, do whatever makes you happy. Go out & be social. It’s ok to reconnect with an old flame, there’s no rule against being friends & letting it develop in to something more IF and WHEN you are ready. If you haven’t already, try to line help taking care of your husband, if finances allow, maybe you could get him a caregiver to work a few hours a day!
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Reply to worriedinCali
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Having friends in is a great idea. I have to do that when I can. Whatever you do, honor the vows you made. When you are free in the eyes of God you can pursue a relationship. You won't enjoy it if you move too soon.
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Reply to Graceneeded
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Dear Yahtzee, I have been semi-retired for a few years, and at first it was lonely, without my familiar work friends around. I volunteer at the Botanic Gardens, I started dance lessons ( a bit expensive) , and I take tennis lessons. I also have two big international trips planned for next year. Online, I joined a few meetup groups such as a book club and wine tastings. Is there anyone who could watch your husband for a few hours and/ or days so that you can get out of the house? Do you have any funds available to pay a company for some professional help with your husband?
If you must stay at his side 24/7, you could host gatherings at your house on a regular basis, such as a church potluck, or a book club, or wine and cheese tastings. Please know that you’re not truly all alone; I’m sending you a big virtual hug from Denver:))

About the gentleman, you can surely be friends for the time being, and perhaps meet for coffee or a movie once in a while. No harm at all in catching up with an old friend!
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