DH has Alzheimer's disease
I am a 58 yr. old trying to care for my 61 yr. old husband with Alzheimer's. He was diagnosed with this disease when he was 57. I hate to see him decline in the easiest tasks he used to do. He can't read or write anymore, but he still claims that he isn't sick. I hate this for him or anyone that is going through it. I am angry that our lives and future plans are no longer. Does anyone else feel what I'm trying to express? How are you dealing with it? Please give me some advice or suggestions. I welcome it. Thank you.
Comments
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Welcome Noemit. Your DH has anosognosia, that's why he still claims he isn't sick. This is a characteristic of dementia and means that a PWD (person with dementia) is unaware of having dementia. If you confront him with reality, he will get upset. You will have to learn the work-arounds that the members use.
Iris
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I have found that admitting to myself that my husband has a progressive and fatal disease has helped me with the sense of loss I am experiencing as my husband loses every single skill set he ever had. Somehow it feels less incongruous to accept his shortcomings when I deeply acknowledge this fact of his illness. I feel like both of us can get caught in the fantasy that he will get better someday especially as he isn't aware of his shortcomings. I know I have to do the work for both of us to accept these things I cannot change. Let the anger visit you and wrestle with it and then let it go so it doesn't destroy you, too.
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The book, Ambiguous Loss by Pauline Boss describes the loss felt when our LOs are still alive, but not here. It's devastating for so many reasons. I'm filled with grief, but others don't understand it. Thank goodness for this forum.
Our past exists in my memory, only. The present is horrible. And the future we planned and worked for has evaporated. Our lives have been destroyed,
Dementia sucks.
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Yes, it is the slow emotional death by a thousand cuts as dementia steals away your LO and the life you had planned, in small pieces over years, while you try to live as much of a normal existence as you can that is the way of the caregiver. I tried to recognize when the good days happened and made the most while it lasted, even for a few hours. The rest was trying to meet DW in her reality by not arguing, not correcting, agreeing with impossible ideas, going with the flow, more affirmations. When I was able to let go of these uncontrollable things is when it got a little easier. And finding this community was also a great gift.
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Read as many of the posts here as possible. You will see yourself + your situation in many of them + may open your eyes to what could be in store for the two of you.(And advice that has worked for others in your shoes)
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You have found a good place for advice and support. There are many of us out here who understand what you're going through. Agree with the above recommendation to read a lot. You will learn things and you will feel much less alone.
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I am so sorry you have to go through this. My DH was diagnosed when we both were much older than you and yours. I think it’s so much more devastating at a young age like yours. Please know everyone is here for you any time you need us.
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Welcome. I am sorry this has happened to you and your husband.
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So sorry you have to join this group, but this is the place to be if you need to be. We understand. Take some time to read previous posts. Search on topics or keywords. There's a treasure trove within these discussions. First thing is get your DPOA and Healthcare directives done if you haven't already. I learned that from this group and it was a life saver. And since your husband is so young, if he has an official diagnosis and no longer capable of working, apply for SSDI now.
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Thank you, Iris, for this information. I looked it up and it is exactly what he has. It's heartbreaking. I don't bother replying back to him when he tells me there is nothing wrong with him and he doesn't have Alzheimer's. I am trying to get together with groups and professionals to help me understand him through this process. 😭
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Thank you Buggytoo for the advice. I can tell you understand exactly how I'm feeling and experiencing because you are living it too. When the Neurologist office suggested the Leqembi treatments before they changed their mind because he is in the moderate to severe category and they don't like the side effects. I truly thought this would cure him and give me back my hubby, but I have to accept it. I get so angry and I know I have to work on this. I don't show any anger in front of him because I want him to be happy and in peace. Even though I'm dying inside. I hope you continue to be strong. It sounds like you are truly working on you to help him and that is what I will have to start doing. 😭
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Thank you JDancer for the information on the book. I researched and found this link and I'm definitely going to look more into it.
Yesterday was my birthday, and I cried all day. I told my DH that it was my birthday and I would like to go out to dinner, but no luck. He stayed in a thought look but didn't wish me a happy birthday or wanted to go out for dinner. So, I went back to bed and cried some more. The past is only in my memories too. You know what I'm feeling when I say our future plans and lives were destroyed. I love and care for him daily, but with a broken heart. I hate seeing him decline and I can't do anything about it. 😭
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Thank you wizmo for understanding how I'm feeling. I'm sad for all of us that are in this forum, but I'm glad we have each other to talk to. I am trying to enjoy hours during the day to make him smile when he looks confused. I catch myself before I try correct him in a task he is trying to help me with in the apartment, but I stop and remember that he is trying the best he could with what little he remembers. I thank him for taking the garbage out and I can see his big smile. I miss him so much. Keep doing what you are doing and thank you for the advice. 😭
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Thank you terei. You are absolutely correct. It helps to read other posts because I know they understand me. I understand them and can relate. This process is truly hard and I'm glad I'm not alone. 😭
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Thank you M1. Yes. I am now understanding that I am not alone in this awful process with my DH. I have started looking into books and information already to help. Replying to all of you releases the anxiety on my chest. 😭
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Thank you jsps139. I'm sorry you are going through this pain with your DH. I was 53 when he was diagnosed with Alzheimer's at 57. My world felt like it exploded, and I couldn't catch my breath. I hate this for my DH and for me. 😭
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Thank you midge333.
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Thank you Dio. I have been reading each post very carefully and taking notes on different books and links that can be of help to me and my DH. What does DPOA and SSDI stand for? He was diagnosed 4 years ago with Alzheimer's and all latest tests and assessments have just confirmed that he is declining. It's heartbreaking to see him this way. 😭
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Happy birthday btw. It is agonizing when you can no longer share things with your life partner that you used to expect as a matter of course. Holidays are no more, anniversaries, etc.
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Thank you M1. I will have to prepare my heart further because our wedding anniversary of 42 years will be on 8/28. I'm sure I will spend it in bed crying. I hate this! 😭
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DPOA is a Durable Power of Attorney. As I understand it, the durable power of attorney has a clause that says it is to remain in affect when the person suffers from a disability. Without the clause that makes it durable, the POA is changable through out it's duration, and is void when the person is no longer competent to make changes to it. Someone smarter will give you a better answer, but that's the gist of it.
SSDI is Social Security Disability Income. You can google that to get more info on the program administered under Social Security.
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I have exactly as you do. In same position as wife has no idea what she has tells me every one forgets things. Before coming on this site and listening to all, my responses would been more like “ I forget tell me our wedding date” and she couldn’t. But now I understand not same person I married 55 yrs ago. But she’s still pretty good. Can only hope that’s all we got
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I used to tell my husband that by the time everyone gets older they have things wrong. Sometimes it involves your heart or lungs or diabetes or joint issues or whatever. I would stress what good shape he was in except that he had memory issues. I told him I was there to help him with whatever issues he had. That seemed to help him a little bit.
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Happy Birthday! I'm sorry it's so hard right now. My birthday was last month and DH didn't/couldn't acknowledge it. It hurt, of course, but it helped that others acknowledged it. I think you will find the book, "Ambiguous Grief" helpful. It helped me understand the mixture of emotions I was having.
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Oh yeah. All of those feelings — angry, heartbroken, bereft, depressed, but also a bit more accepting of it after these years of trying to deal with it all.
How am I dealing with it? I have a therapist now. Huge help. I do a daily acknowledgement that I’ve known my DW forever and will always know her and she’ll always be with me. I garden like crazy sometimes to distract and stop my head and heart from spinning. And, this forum is a lifesaver for me. I’ve managed a few short trips with friends recently. Big, big help. And I’m still working, which allows me to keep the active, driven and intellectual part of me going.
I was a total sobbing wreck two years ago. I’m not anymore, so these things must be helping a bit. I imagine the small dose of an antidepressant is doing some heavy lifting too.
Hang in there!
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Challenging the PWD with questions like "what's my name?" or "who is the president?" don't help because the PWD doesn't know the answer.
Iris
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As concerned_sister replied, DPOA is Durable Power of Attorney in the event that a person is incapable of or doesn't want to manage his/her owned financial assets, and will continue to be in effect until the principal dies. Typically it is worded to take effect immediately, not at some future date. In the state of CA, you'll need a separate Advanced Healthcare Directive to manage affairs regarding healthcare, which is separate from financial assets.
As for SSDI (social security disability insurance) since your husband is so young, he will qualify to receive his social security now, before reaching the required age of 62, as long as he meets the requirements, one of which is "Early Onset Dementia" that also expedites the process under Compassionate Allowance. This payment will turn into his social security retirement benefits when he reaches the required age. The amount won't change because it is supposedly calculated based on when he turns 62 and eligible for SS. Another plus is that once he is approved and starts collecting SSDI, Medicare kicks in exactly 24 months later without having to wait till 65. And enrollment in Plan A and B is done automatically. Just google these topics. Laws may change so stay informed.
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Re laws changing, we met with the CELA this week. As of Jan 2024, it's no longer 24 months to wait for medicare. My DB is about a year and a half away from 65 so I thought for all purposes he wouldn't get it early. She said, no, if he recieved SSDI (here in CA) it would only be a 60 day wait for medicare.
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Wow! That's great news!
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She also said that we didn't need to worry about a medicaid spend down and the five year look back was no longer applicable (here in CA).
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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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