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
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.
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 .
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.
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.
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.
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.
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
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.
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!
Rremember it's the disease
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.
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.
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