DH diagnosed with Dementia
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smelejorde, Welcome but sorry you needed to seek out our community. I have no words of wisdom about how to respond to your husbanded other than what you are currently doing, reassuring him and loving him. My DW is in the late stages of this journey and living in MC, I visit her almost everyday and still tell her that I love her and I’m there for her even though I very much doubt that she can comprehend anything I’m saying. These words may seem insufficient at this moment but we all need to know we are loved and that what’s important. I wish you strength and patience on this difficult journey.
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My DH often apologizes for being a burden. I tell him all of the time that we are in this together until death do us part.
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What if you asked him … if the tables were turned and it was me that needed your help, would you leave me? (He’ll say … no.)
Well, I’m not leaving you either. Life has bumps in the road, and we’ll handle this bump together.
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My husband says the same thing. Pretty much daily he apologizes to me for marrying a younger woman. I’m 68 and he’s 80. I tell him every time not to apologize, that he would do the same for me and I have no regrets. I always reassure him he will always be here with me, even though I know that may not be so. My husband recognizes the fact his brain isn’t working right, but at the same time the word dementia is never spoken in this house, even if he asks me if he’s like his mom was. I do everything I can to relieve his stresses and that in itself can be stressful for me. I’m glad you found this forum. There are amazing people who offer a good ear and wonderful advice and support.
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My partner was in tears today worrying about being a burden and ruining my life. Broke my heart. Interesting how the flashes of empathy still occur. Granted she was in pain with a terrible headache. Hospice is a blessing because she could have some morphine and went to sleep feeling better. We laughed a little over my telling her to hush and being a stubborn old biddy. I slipped out.
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As others have said, it’s important for the PWD to feel loved and that’s the best you can do. Your responses sound spot on. It’s a tough journey but you’ve found a great place to connect with others of us who know what you’re going through.
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Sarndra, so sorry you have to be here but this is the right place! Everything you wrote describes perfectly my motto with DH and our early period when we thought his condition was severe major depressive disorder. He knew something was wrong but couldn't do anything to stop what was happening. He used to say, I wish there's a magic wand to wave and make all this go away. I did my best to reassure him that I wasn't going anywhere, showering him with all the love I could muster, but the disease ravaged away at his brain. At first, he was still amenable until he wasn't. He accused me of lying, that I was just pretending, that he'd be homeless, that I wanted a divorce…every turn, every paper he needed to sign (like his retirement submission and pension allocation and SSDI application, etc.) he thought was divorce papers in disguise. He thought of me as his life saver but at the same time the harbinger to the loss of his life saver. Although there were lucid moments when he thanked me for being there, these moments became less and less. My heart was breaking into so many pieces in so many ways (which I don't think can ever be mended). He became increasingly paranoid, inconsolable, uncontrollable, and violent. Still, the reality of his condition and my responsibility forced me to forge forward. Fast forward to today, nearly 3 years later after a turbulent roller coaster ride, he is finally receiving the right combination of medications and has been calm and almost normal at the MCF. Same time, last year, MCF had to call 911 on him. I would have never imagined it possible for this 180 degree turnaround.
I don't know what type of dementia your DH is afflicted with. Mine is probable Lewy Body Dementia. I share my story not to frighten you but to prepare you for what may come. What you're doing is all you can do at the moment. At some point, even loving reassurance may not be enough. Just take it one moment/day at a time. With love, you are doing the best you can! Come here often for support, info, and even just to vent. We understand.
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M1, your post made me teary eyed and smile all at once. 😥🙂
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Dio
My DH has been in memory care for 5 months. I cared for him for the last few years and felt guilty putting him there but also felt relieved that he was in a good place. I visit him 4 times a week as I still work full time. He too, we believe has Lewey Body. He is only 67 and doesn't know me, how to talk and just recently is forgetting how to walk. Basically he is like a 2 year old in his brain. I dealt with him being in MC until the past two weeks. Now I am a wreck and can't seem to find my way out of this dark hole I am in. I focused on how grateful i am that he is being taken care of but have become so emotional i cant even talk about it out loud to anyone. How do you cope each day?
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Klindholm25,
It isn't easy, for sure. At first, after overcoming the dreaded and fearful anticipation of placement not going well, I was very at peace with the decision because I was fearful for my safety. After placement, I've got my freedom back and can sleep at night in peace! It was rather exhilarating. After 2 months or so, DH became apathetic, didn't want to partake in the activities, and just stayed in bed eyes wide open all day, didn't go to the dining hall unless prompted. What's worse, he turned violent. I was frozen with fear that he'd be evicted. Needless to say, placement wasn't the end all to my problems. He was placed in a private room instead of shared because he no longer was deemed safe with a roommate, which sent monthly costs sky high. But the worst was harming others. Fortunately, the MCF Director worked relentlessly to convince DH's neurologist to add/adjust meds. It took about 2 months for the combo cocktail to work, and a miracle happened: DH seems almost normal, back to his kind, sweet self. I I've been wracked with guilt ever since, wondering if I should bring him home. My family and online support group all responded with a resounding NOOOOOoooo, for they have seen or gone through my horrifying periods with DH. I also reread my journal entries to remind myself why I had to place him. The MCF provides free counseling once a month to family members and in these sessions, she suggested that I look at the facility as an extension of me, that the staff and facility are DH's complete caregiving team of professionals, that I am providing the best care possible for DH, and it's because I placed him there that he's able to get the right medications. She explained that the guilt I'm feeling is due to not properly processing grief for the loss of DH and my happy life, that I'm somehow punishing myself. Right now, I am struggling with not knowing how to process grief. But the guilt has lightened a bit. Hope what the therapist suggested to me will help you, too.
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welcome. So sorry you are going through this. Keep reassuring him and change the subject. His world is falling apart and you are his anchor. He will probably ask and say it over and over for reassurance because he’s anxious. Read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Take one day at a time. This is the place for info and support.
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Your feelings mirror mine so closely. I placed my 68 yo DH in May due to increasing agitation and aggression. The MC at first called almost daily due to difficult behavior, aggression toward other residents, and sent him to the ER due to being highly agitated. After a couple of months, increased anti anxiety meds and Seroquel, he calmed down, became cheerful and pleasant nearly all the time. I now wonder if I should bring him back home, but everyone says that he is only better because the MC is helping, he doesn't see me as his jailer and his nighttime wakefulness - still an issue - isn't resulting in neither of us sleeping. But - I still feel the guilt and also the loneliness. Even though it was so hard, I wasn't living alone and doing life as a single person, after 48 years together. For those of us who "lose" a spouse to MC and dementia - there is no outpouring of support, a fixed point in time where we lose our LO, or a way to process our grief. It is so odd, to be grieving the loss of my spouse and our marriage and relationship - but because he is still alive, no one reacts like they do when someone becomes a widow due to a spouse passing away. I don't feel like there is a blueprint for how we are supposed to process this grief - it is certainly different for us than people who lose their LO through almost any other disease or accident. However, all of us here get this and can help each other - this is really hard, and sad, but I hope and pray that we will all figure out how to move through the stages of grief. Those who are ahead of us on this path, please share how you found a way to process the grief. It seems like no one in the "non-dementia" world gets what we are going through…
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@LindaLouise and others:
I highly recommend reading "Loving Someone who has Dementia" by Pauline Boss.
Pauline Boss's exploration of ambiguous grief helped me understand the devastating grief I was feeling as my DH slipped away into his own world of dementia.
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My husband is very aware he has Alzheimer’s, although he can’t always remember the word for it. He just says he’s ‘broken’, and asks me daily what’s wrong with him. (He also has probable Lewy Body, but doesn’t remember that conversation at the Neurologist office, and I have no intention of reminding him.) He too talks about being too much of a burden on me, is very afraid I will leave, and he will become homeless. All I can say to him is how much he is truly loved and wanted. There really are no set answers to this; you know your DH best and how he will respond to what you tell him. But as others have said above, you are in the right place, and you are not alone in this. I am relatively new here as well; I have learned to take counsel from those who are further along this path; they truly know of what they speak and are always sharing their experiences (good and bad). Hang in there!
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This is exactly like us. DH is 66 and i am 50 and we rarely say the word Dementia in our house. DH's mom has dementia and I lost my dad last year and he had it as well. It is all too much sometimes but we still have to keep putting one foot in front of the other.
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I am listening to this (audiobook) at the moment. It is really good.
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I’m so sorry. That is a lot to handle at such a young age as yours.
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Oh my! You are in the same situation as I…I finally found someone who shares what I am going through!! I feel less "isolated" now. What you wrote about being a widow with a spouse who is still alive definitely describes our situation. I am learning to live as a widow, to take care of things, but the emotional part needs to be resolved which is the hardest part.
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FMB, Thanks for the recommendation. I've read this book and so many more. Her explanation of ambiguous loss is so on point. Maybe I should reread it now.
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> @LindaLouise said:
> Your feelings mirror mine so closely. I placed my 68 yo DH in May due to increasing agitation and aggression. The MC at first called almost daily due to difficult behavior, aggression toward other residents, and sent him to the ER due to being highly agitated. After a couple of months, increased anti anxiety meds and Seroquel, he calmed down, became cheerful and pleasant nearly all the time. I now wonder if I should bring him back home, but everyone says that he is only better because the MC is helping, he doesn't see me as his jailer and his nighttime wakefulness - still an issue - isn't resulting in neither of us sleeping. But - I still feel the guilt and also the loneliness. Even though it was so hard, I wasn't living alone and doing life as a single person, after 48 years together. For those of us who "lose" a spouse to MC and dementia - there is no outpouring of support, a fixed point in time where we lose our LO, or a way to process our grief. It is so odd, to be grieving the loss of my spouse and our marriage and relationship - but because he is still alive, no one reacts like they do when someone becomes a widow due to a spouse passing away. I don't feel like there is a blueprint for how we are supposed to process this grief - it is certainly different for us than people who lose their LO through almost any other disease or accident. However, all of us here get this and can help each other - this is really hard, and sad, but I hope and pray that we will all figure out how to move through the stages of grief. Those who are ahead of us on this path, please share how you found a way to process the grief. It seems like no one in the "non-dementia" world gets what we are going through…0 -
I am experiencing the same as you are Jim has dementia. So sweet and loving till he goes into dusional thinking and doesn't think I am his wife and got in car and went looking for wife me. So sad and scary and painful police found him a mile away and brought him home0
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Hi Bev and welcome. I'm glad the police got him home safely. I hope that's the last time he drives- taking away the car keys is very hard, but if he doesn't recognize you then he has no business behind the wheel.
If you look to the right under quick links and groups, there is one for new members with a lot of useful information including a good staging tool.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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