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There's no reason to be hurt because this has no foundation in reality. I know that doesn't always help but knowing the facts, educating yourself about this might help. There are instances where spouses enter care, don't recognize the hubby or wife, and form new relationships in care with fellow residents they believe are their husbands/wives.
You may be closing in on the time when it is crucial to explore care options going forward. You may not wish to sacrifice your life to someone who not only is not the person he was at all, but who won't be again, and who will perhaps take your life in sacrifice down with his own. You may need placement and getting on with your own life, and that is something it will take time to consider the options for.
I am so sorry. This is like a living death, like losing someone slowly who is still physically there. I would suggest a couple of counseling sessions with a licensed Social Worker in private practice specializing in life transitions.
Again, I am so sorry, and other than recognizing the this is a broken brain, there's not a lot else to know. I hope you will update us.
Please remember he loves you, or you would not have been married for 30 years! He has a disease and it is taking HIM away! All I can give you is try not to react to his being mean try to redirect him to something else -- if he says I don't love you maybe you can say what do you love - pancakes? a book? This program? or redirect to - let's make some lemonade, let's do some adult coloring book, let's fold the clothes, let's water the flowers. Know that I said a prayer for you and your family! cyber hugs.
thank you for responding. I’m so sorry your father told you were the worst daughter. That is heartbreaking. really . What a good daughter you were to take care of him. The best.
yes, I work with the tool of distraction. It is a good approach. It helps. I try to focus our days towards positive actions we can feel good about at the end of the day. It does build good will between us.
It is similar to caring for a young child, as someone else pointed out. The child says they hate you because you set an appropriate limit and you say I know, but I love you anyway, and we just keep rolling along with our day. Then at the end of it they love you because you are sturdy enough to hear their anger and continue to be loving. Trust and attachment deepen. Affection comes easily. We feel closer.
with my good husband now, he doesn’t love me and there is no affection. Nothing to build. Only the slow decline. The long goodbye. I’m mad about it, which I do realize is an important stage of grief.
it’s all so subtle, his decline, and he can still be charming in social situations. I’m happy he can be happy and engaged in those moments. He also does care about how I’m doing, somehow, he just doesn’t love me or really even like me anymore…but, somehow, he will drive me many hour to go visit one of our kids. He can do so safely.
it’s like the heart of our relationship has been hollowed out, but we remain functional as a couple. It’s just weird.
Acceptance and emotional flexibility, that what’s I’m going for.
thank you for your help.
bobby9
I am so sorry that you are dealing with this situation. I can’t even imagine how hard this would be to endure.
I think Lea described your situation the most accurately. The ‘long goodbye’ says it all.
We can get through just about anything when we know that it is only temporary. Right?
When a situation is ongoing, remaining the same, day after day, it becomes more and more difficult to handle.
There are no easy answers for a situation like this.
I agree with Lea that you deserve a life of your own.
Of course, it is devastating to see your husband’s life slipping away from him. What purpose does it serve for either of you if your life slips away from you?
Please try to find a balance that works. I know that you don’t want to abandon your husband.
Taking necessary time away for yourself is not abandoning him. You matter too. Your mental and physical health is important.
I will keep you in my thoughts. I wish you peace.
thank you for responding. I appreciate it. How do you not become bitter or angry or just generally shut down given that caregiving is a thankless roll? I am really wrestling w this in my desire to feel more acceptance and less angry?
bobby9
Yes, we know the person's brain is malfunctioning. I'm a damn strong 70 year old woman, who has been through so much tragedy and pain.....I can usually brush it off.
Yet when I'm worn down (or lack sleep), those cruel words still can get to me.
i wanted you to know I get it. It sucks. It's not fair.
thank you for responding. You’re right, it is very hard to not take it personally…. That my husband says he doesn’t love me anymore. I understand it’s not personal. I really do. But it makes mad, then sad, then I have to wrestle with the fact that he can’t help it and he is leaving me through dementia and we are already at this point in our lives and how can that possibly be that life is so short! Then I go out and try to have some fun…. You know… enjoy the day… and I do. But it’s just lousy to come home to a person who doesn’t love you. That blank face. But he needs me and I refuse to abandon him. So here we are. Living w a person who doesn’t love me anymore is changing me as a person, just like living w someone who is warm and loving changes the partner receiving that. I feel hardened, somehow. I feel sad about that. How do you stay open? Bobby
But when a family member comes to them, the look quizzical, but comfortable, even as they ask the family members, who are you? Everything is in a much calmer tone.
My feeling is for you to remember
The Heart Never Forgets!
I believe that is true!
Thank you for replying to my post. It helped me, honestly.I hope the heart never forgets, as you say. There’s something there between us still. In this developmental stage that my husband and I are in, retirement and enjoying life with an aging body myself, I try to put it in the larger bucket of acceptance and letting go. He’s going. We are saying goodbye. It’s sad, but not every moment is sad. I think I can feel that the heart never forgets. Gratefully, bobby9
About Me
Married for 30 years to a wonderful man who is changing. We’ve been tracking his “white matter brain disease” for 15 years. Slow decline. He’s increasing agitated, lacks impulse control at times, delusion (paranoid) thinking at times, gait changes. He’s becoming boring…which feels so mean to say, but he takes a long time to say very obvious things. He’s forgetting what he knows; he asks me what words mean. They are words that he knows. At those times, I try to be very matter of fact. “No big deal.”
I feel sad, irritable, bored, burdened, depressed.
I'd answer him back by saying, "but I love YOU very much honey" and then go about your day. Focus on his actions rather than his words which aren't indicative of how he feels, since he's "caring and attentive."
You need to have a life yourself, especially after 15 years of dealing with DH and his disease! Now that things have progressed and boredom is a factor, do you have help coming in to give you respite? If not, now is the time to hire some. Get out and do things w/o DH that make YOU feel good and are self nurturing. The "long goodbye" in this case is decades. Don't focus SO much on DH and his disease that you lose yourself in the process.
Best of luck looking after yourself now too.
This is hurtful.
This is no longer the man you fell in love with. And for him, you aren't the woman he fell in love with either.
But THIS is real love now. The kind of love that must sustain you as you walk together through these dark woods.
So how do you respond?
You look him dead in the eye and say:
"But I love YOU! And you are the same handsome boy I married. And I will love you forever".
And then you get on with your chores.
Is it a lie? Yeah.
And those of us without dementia, WE REMEMBER HOW TO LIE.
We know we can't say "It is so hard to love you now; you aren't yourself; I wonder who you are; I almost would rather you were dead that having to go through this. I cannot bear to stand witness to your pain".
You want truth? This is agony.
I am so very, very sorry. But don't lose yourself. You have already in some sense lost him. Your mission now is one of mercy. Don't lose who YOU are.
My heart goes out to you. I never give (((hugs))). But I would love to give YOU one.
I thank you. Your feedback is challenging and interesting and I appreciate your candor . Sincerely.
It is true that it is very hard to continue to actually, genuinely love my husband who is clear that he does not love me anymore or even like me very much. It wears me down. It is numbing.
Saying “ I love you anyway “ feels pollyannaish sometimes, as I’ve mentioned here in another conversations. It feels false, because I would never stay w a partner who doesn’t love me if it weren’t for the 31 years of marriage and 2 kids etc etc . I made a vow of commitment to this human being who now needs me to remain devoted and caring during his decline. It is the “worse” side of the for “better and worse” vow.
Lying. Ugh. Yes I am a lier. My relationship requires that I have the capacity to lie.
it’s not how I hoped I would “grow” in my marriage!
Honestly I’ve just stopped saying I love you to him because it’s just to weird to say “Goodnight. I love you” and have him just turn away.
maybe we just don’t love each other anymore and we continue to care for each other as best we can and then
yes
as you said
this is
true love
at this stage of our lives together.
Like two trees planted next to each other, each shriveling up in different ways because their roots are entwined.
I do love him. But I’m just going to tell you that, because it’s too painful to say it to him. Too vulnerable. It feels too pitiful to repeatedly put myself in that position. For me. I guess I’m not that sturdy.
Each of our relationships is different , of course.
AND at the same time, this statement from you also rings VERY TRUE so thank you……
You said to me: “And those of us without dementia, WE REMEMBER HOW TO LIE.”
Wow. That is just a wonderful thing to remember.
Life is so weird.
thank you so much for your honesty and candor. I appreciate it, sincerely.
thank you
bobby9