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My thoughts though are , I'm thinking your husband is thinking "love" as the romantic movie, heart pounding love. Maybe his dieing brain can't understand the love of a long partnership, aging together, taking care of each other.
Try not to take it personal , I'm sure it's hard. Best of luck to you
OH MY GOODNESS! I did not have that but my daddy did say I was the worst daughter in the world. I had to ignore it and continue to care for him. I didn't yell at him, it would not have done any good anyway. I had to brush it off. I think it made me a stronger person cuz now I seem to just not care what people say to me - my feeling now is: this is how I do it and if you don't like it not my problem - this works for me! 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.
Dear southern waver, 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
This isn't about responding so much as it is about a broken brain that has utterly no idea what it is saying. 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.
AlvaDeer, I’m gonna say it again: you give amazing responses and say the perfect words. This IS a living death - the long goodbye. By the time you want to say that goodbye or get answers from that person that you’ve always wanted to ask, it’s too late. As you said, the brain is broken. It’s so hard that I have no words to describe, but, I do go to grief counseling now and it’s really helping. This counselor specifically hones in on grief you’re experiencing, but, the person you’re grieving isn’t dead. I know it’s the disease- I need coping skills to accept that. I’m sick of people saying it’s the disease - DUH! I know that! Help me get through it - that’s all I ask. Death would be easier. My wonderful husband is only less than 10 minutes away and that helps. The original place was 35 minutes away. Ugh! I’m so glad he is so close - it’s so much easier with everything! I think of the wear and tear on my car and gas bills if he were far away. I go visit all the time so it’s nice.
So sorry this is happening to you. It's very hard to be told by so many who are dealing with loved one;s dementia "not to take it personal." I get it 100%.
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.
Dear Dawn, 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
Dear Kweimer, thank you for your support. I do believe it’s the disease , and I am committed to my husband and our family, but it also doesn’t feel healthy at some level to be living w a person who doesn’t love me. I have to do a lot of extra inner work reminding my self that I am lovable. I have always been lovable and just because my husband doesn’t or can’t feel or remember that he loves me doesn’t change that. Trying to focus on acceptance without it becoming bitterness or victimhood.
Something that I've seen with dementia patients, when a stranger comes up to many of them they act scared , nervous, don't understand who this person is. The ask WHO are you, in a very demanding way.
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.
Dear aNancy, 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
My Grandson would do this when he was 2 and a half - 3 . One Minute " I Love you Grammie ." Then another Day ignore me or give me a Look . I had seen him do this with other people so I didnt take it personally . You have to remember sometimes they really dont know what they are saying . I Took care of My brother for 6 months with stage 4 cancer and schizophrenia and after he came out of the ICU We met with the doctor and he was telling the Doctor " That My Place was awful , he couldn't Listen to the radio . " I was so embarrassed but what it is - Is I wouldn't Let him smoke . So he went to a rehab and they let him smoke 2 Months later and he died 2 Months later .
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.
How hurtful, even when you know it’s the disease talking. Respond by doing something positive and enjoyable for yourself. This may be a long road, please find ways to have breaks from your role and be good to you
Yes. 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.
You know that he's sick and not in his right mind from his illness.
So the next time he tells you he doesn't love you anymore look straight at him and say "okay" or "whatever"as casually as you would if someone was asking you of you wanted a cup of coffee. Don't get upset about it in front of him. Don't plead and tell him how much you love him. No. Just say "okay" or "whatever" and walk away.
Dear BurntCaregiver, thank you for your feedback and support, yes , there’s NO pleading on my part or trying to convince him that he does love me, but it just feels lousy. Especially, of course, when I’m tired.
Being burnt out…..yourself…. How has it changed you?
I feel myself hardening somehow, not entirely all bad, mind you. I have much clearer boundaries now in all my other relationships, which feels mature and reasonable. I have limits. I have, simply, a narrower bandwidth as a result of the emotional demands for resilience and flexibility required in my marriage.
I am letting go of “us” . That’s my emotional practice, I think. I am letting go is “us”. We will not be that aging couple with the tender loving appreciation and affection for each other that translates into “cherishing” each other.
I can still cherish, that at some point, we did have that.
thank you for your candor and for listening as I work my way through this.
I did not answer this when it was posted because I felt you received good info. But reading again made me think " they also get words mixed up" He maybe trying to say "I love you" but the "don't" gets in there. My Mom was trying to tell me something one day. She kept repeating the same word over and over. Finally she pulled on her bra strap. She was trying to say bra. The word sounded nothing like bra.
He has word substitutions and transient receptive aphasia, sometimes echolalia . His neurologist has asked me to track that, since different verbal substitutions and word “creations “ indicate damage in different regions of the brain. I have been tracking it for 15 years. Very slow progression.
I guess I can be grateful that it’s slow , sigh…. In my better moments.
He has said he feels sad that he doesn’t love me anymore, but it comes across very flat. He doesn’t seem sad when he says it, just matter of fact.
Anger is the one emotion that feels genuine from him, and I am conscious, for my own sake, to not trigger that. I cannot ask for any kind of emotional processing with him because it makes him feel attacked. It’s asking too much from him and is clearly agitating to him so, I try to accept and mourn that.
i don’t want to become emotionally flat, like him though. It’s some extra work to stay connected w other people who are lively so I can enjoy my own aliveness.
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.
Dear Bobby, he is ‘caring and attentive’. Perhaps you just say ‘As long as you keep treating me with what looks like love to me, that’s good enough. I’ll do the same, only I’ll call it love’.
He may be trying to say something else . Like “ I love you more “.
You could respond with “ I love you and I am happy we are together “.
Or maybe he is aware on some level that he is not feeling the same normal emotions ( due to the disease ) as before and he is trying to tell you that he knows something is wrong . Maybe He’s telling you he can not feel the love emotion . Maybe he wishes he could feel normal emotions and this is how he’s complaining that he can’t feel love emotion . He says it the way someone else would complain about something else , for example ….. “ I can’t taste garlic anymore “
I’m sorry for both of you. You sound like you are doing an amazing job .
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I'm sure you know it's the deasses talking.
My thoughts though are , I'm thinking your husband is thinking "love" as the romantic movie, heart pounding love. Maybe his dieing brain can't understand the love of a long partnership, aging together, taking care of each other.
Try not to take it personal , I'm sure it's hard. Best of luck to you
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
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
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.
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
Rremember it's the disease
thank you for your support. I do believe it’s the disease , and I am committed to my husband and our family, but it also doesn’t feel healthy at some level to be living w a person who doesn’t love me. I have to do a lot of extra inner work reminding my self that I am lovable. I have always been lovable and just because my husband doesn’t or can’t feel or remember that he loves me doesn’t change that. Trying to focus on acceptance without it becoming bitterness or victimhood.
thanks again for responding to me.
bobby9
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
So the next time he tells you he doesn't love you anymore look straight at him and say "okay" or "whatever"as casually as you would if someone was asking you of you wanted a cup of coffee. Don't get upset about it in front of him. Don't plead and tell him how much you love him. No. Just say "okay" or "whatever" and walk away.
thank you for your feedback and support, yes , there’s NO pleading on my part or trying to convince him that he does love me, but it just feels lousy. Especially, of course, when I’m tired.
Being burnt out…..yourself…. How has it changed you?
I feel myself hardening somehow, not entirely all bad, mind you. I have much clearer boundaries now in all my other relationships, which feels mature and reasonable. I have limits. I have, simply, a narrower bandwidth as a result of the emotional demands for resilience and flexibility required in my marriage.
I am letting go of “us” . That’s my
emotional practice, I think. I am
letting go is “us”. We will not be that aging couple with the tender loving appreciation and affection for each other that translates into “cherishing” each other.
I can still cherish, that at some point, we did have that.
thank you for your candor and for listening as I work my way through this.
gratefully,
bobby9
yes. Good point.
He has word substitutions and transient receptive aphasia, sometimes echolalia . His neurologist has asked me to track that, since different verbal substitutions and word “creations “ indicate damage in different regions of the brain. I have been tracking it for 15 years. Very slow progression.
I guess I can be grateful that it’s slow , sigh…. In my better moments.
He has said he feels sad that he doesn’t love me anymore, but it comes across very flat. He doesn’t seem sad when he says it, just matter of fact.
Anger is the one emotion that feels genuine from him, and I am conscious, for my own sake, to not trigger that. I cannot ask for any kind of emotional processing with him because it makes him feel attacked. It’s asking too
much from him and is clearly agitating to him so, I try to accept and mourn that.
i don’t want to become emotionally flat, like him though. It’s some extra work to stay connected w other people who are lively so I can enjoy my own aliveness.
thank you so much for responding, Joanne.
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.
Words are important, exception is when the brain can no longer use them correctly. He might as well be saying "I want a banana".
When the words don't match the behavior, go by the behavior.
Exception is when the behavior is also altered by the disease.
This behavior equals "LOVE" in your husband's vocabulary:
"but he is caring and attentive".
Like “ I love you more “.
You could respond with “ I love you and I am happy we are together “.
Or maybe he is aware on some level that he is not feeling the same normal emotions ( due to the disease ) as before and he is trying to tell you that he knows something is wrong . Maybe He’s telling you he can not feel the love emotion .
Maybe he wishes he could feel normal emotions and this is how he’s complaining that he can’t feel love emotion .
He says it the way someone else would complain about something else , for example ….. “ I can’t taste garlic anymore “
I’m sorry for both of you. You sound like you are doing an amazing job .