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Husband newly diagnosed with Alheimer's at 61: overwhelmed

Posted by tak66 @tak66, Jan 21 6:15pm

While I am reading everything I can find, I am still overwhelmed with his diagnosis. Both of his parents had AD and my grandmother so it’s not new to me. However, this feels so different. He thinks he’s going to take meds and just get better. I don’t have the heart to give him the honest truth. He has had the bloodwork that showed positive for the double EP4 gene, high level of Ptau. MRI positive for atrophy. CT scan and PET scan positive for frequent plaques. He is still working but is struggling. We have not had a full cognitive test - just the mini ones at the neurologist which he failed. Major struggles are time, days, using his phone and computer, leaving the freezer door open, water running, repeating questions, not following a movie plot, etc. I have been to the attorney to update wills and POA. He sleeps a lot which gives me time to research. Does anyone have good reading material suggestions? I’m sad, mad, scared, guilt ridden, disappointed that our retirement dreams are gone. I’m only 59 and didn’t expect this so soon. Any suggestions are appreciated. I know so many are going through this and my heart hurts for all. TIA

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trishaanderson | @trishaanderson | Jan 22 5:38am

Although my husband was diagnosed in 2012, I'm still trying to learn everything I can to help him and help myself. I have a small library of helpful books. I just got a new book I read about on here, Make Dementia Your B*tch! by Rita A. Jablonski.

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labrown | @labrown | Jan 22 6:02am
In reply to @memoriestomoments "Hello @tak66 There is an infinite number of things to know. Aside from some very practical..." + (show)
Profile picture for memoriestomoments @memoriestomoments

Hello @tak66
There is an infinite number of things to know. Aside from some very practical matters, most of them are not urgent. What is essential is to start finding a way forward that is full of more life and joy than it is struggle.

There are many paths to that. I don't presume to know which of them are right for you: But I can assure you that more than one exists. That is the key thing that I want to offer you in this little post: The deep certainty that these medical findings are not a sentence, they are signposts that tell you that you are on a different journey that is full of possibilities for growth and fulfillment.

I'll share one little idea that made a big difference for me. We were younger than you two when my husband's condition became clear (there was also AD in his family). I was a business person and you may know that in the corporate world the senior titles often start with "Chief" as in Chief Operating Officer, or Chief Financial Officer. I decided that my new job was Chief Happiness Officer. As I focused on making my husband's life happy and free of any sense of diminishment, I found that I inevitably shared in that.
-- By ensuring that we did things we loved, I had more fun than I had had before.
-- As he was increasingly able to handle only the present, I experienced the joys of living in the present (something I had not given much weight in the past).
-- The love that his undeserved losses evoked in me, gave me superpowers ( a lot of what other people interpret as patience does not feel that way when you are just doing the loving thing).

I'll leave it at that for the moment. You are fully justified to feel all of those troubling feelings now, as the full evidence of the situation comes in. But they will drain you if allowed to stay top of mind for you for long. You are young and deserve a fulfilling and happy life. That promise is still there, both through and around your dear husband's health issue.

I wish you the best.

BTW: You mention not having the heart to change your husband's sense of optimism. Good for you. There is no upside to upsetting him. We have had only a handful of discussions of my husband's condition in these many years. I have focused heavily on managing things so that he is always focused on what he can do instead of what he cannot.

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@memoriestomoments You have given great advice and recommendations. It is all about our attitudes in facing this disease. Our loved ones may not understand completely all that is going on, but what they see on our faces tells the story. I want mine to see the love and joy I have for him on mine.

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labrown | @labrown | Jan 22 6:35am

You can find a lot of good and helpful book resources on Amazon. Also, two books that really opened my eyes to what the person with the disease is experiencing were “Still Me” and “Still Alice.” They helped me to look at the disease from my husband’s perspective. Teepa Snow, who is a world renowned dementia expert, has many You Tube videos that are very helpful in knowing how to respond to your loved one’s needs. I was fortunate to attend one of her events just yesterday in our city. I wish I had been watching her videos from the start of this journey with my husband. The comments here on Mayo Connect also have lots of good info. We are all on this journey together…we can learn from one another.

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nelms | @nelms | Jan 22 7:39am
In reply to @memoriestomoments "Hello @tak66 There is an infinite number of things to know. Aside from some very practical..." + (show)
Profile picture for memoriestomoments @memoriestomoments

Hello @tak66
There is an infinite number of things to know. Aside from some very practical matters, most of them are not urgent. What is essential is to start finding a way forward that is full of more life and joy than it is struggle.

There are many paths to that. I don't presume to know which of them are right for you: But I can assure you that more than one exists. That is the key thing that I want to offer you in this little post: The deep certainty that these medical findings are not a sentence, they are signposts that tell you that you are on a different journey that is full of possibilities for growth and fulfillment.

I'll share one little idea that made a big difference for me. We were younger than you two when my husband's condition became clear (there was also AD in his family). I was a business person and you may know that in the corporate world the senior titles often start with "Chief" as in Chief Operating Officer, or Chief Financial Officer. I decided that my new job was Chief Happiness Officer. As I focused on making my husband's life happy and free of any sense of diminishment, I found that I inevitably shared in that.
-- By ensuring that we did things we loved, I had more fun than I had had before.
-- As he was increasingly able to handle only the present, I experienced the joys of living in the present (something I had not given much weight in the past).
-- The love that his undeserved losses evoked in me, gave me superpowers ( a lot of what other people interpret as patience does not feel that way when you are just doing the loving thing).

I'll leave it at that for the moment. You are fully justified to feel all of those troubling feelings now, as the full evidence of the situation comes in. But they will drain you if allowed to stay top of mind for you for long. You are young and deserve a fulfilling and happy life. That promise is still there, both through and around your dear husband's health issue.

I wish you the best.

BTW: You mention not having the heart to change your husband's sense of optimism. Good for you. There is no upside to upsetting him. We have had only a handful of discussions of my husband's condition in these many years. I have focused heavily on managing things so that he is always focused on what he can do instead of what he cannot.

Jump to this post

@memoriestomoments
Signposts, not a sentence—Great thought! Thank you!

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cyds | @cyds | Jan 22 2:27pm
In reply to @tak66 "@thereaklenb thank you...I will look for that" + (show)
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@thereaklenb thank you...I will look for that

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@tak66 Hello! and welcome! You are among friends here. I found that locating the right support groups overwhelming. What helped was calling the Alzheimer's Association and speaking with the representative. After a few moments, she suggested that I speak with a coordinator. She submitted my information and then a session was scheduled. What resulted was the fact that my husband and I were both eligible for an early-stage Zoom support group. The first hour is for the person living with the diagnosis, and the second hour is for the care partners (they are separate). We BOTH found it so helpful and go so many questions answered in just the first session.

A note about support group for people with AD or Dementia - As the disease progresses, they are increasingly unable to empathize with others, so you won't find many, if any, groups for them. But you can get help determining the correct group for you by speaking directly with a coordinator.

Recommended reading: in addition to the 36 Hour Day, look at Teepa Snow series of books, and The Unexpected Journey by Emma Willis.

Best of everything to you and your husband!

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tak66 | @tak66 | Jan 22 4:55pm

Thank you so much. I will check that out soon. I appreciate the response.

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cyds | @cyds | Jan 23 10:00am
In reply to @lkbous "@tak66 I’m sorry. Your feelings are valid and allowed. We all completely understand. This is such..." + (show)
Profile picture for lkbous @lkbous

@tak66 I’m sorry. Your feelings are valid and allowed. We all completely understand. This is such a fantastic site for commiserating, venting and learning.
I’ve seen Teepa Snow’s name on here a lot for reading material and I think she has events. Another name is Tami Anastasia, she has some books out, I haven’t gotten her book, but she has webinars every week ‘Dementia Unplugged: Ask the Expert’ and I’ve sat in on those a few times. It’s Mondays at 7 et and I’m sorry that I can’t remember how I signed up for it.
Have a good day.

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@lkbous I just googled her: here is the link. I'll be signing up myself. If appropriate, I'll sign hubby up for them as well.
https://www.dementiasociety.org/dementia-unplugged

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wellnesswins | @wellnesswins | 10 hours ago

@tak66 This is my first day in the Mayo Connect site. I'm so sorry for you and your husband. I retired last year and my 90 y/o Mom with Alz moved in with me 1 yr later. I can relate to your disappointment about plans for your future/ retirement. Similar to what so many have said, I cannot get enough to read to help me with being a caretaker. I always gain something. I recently read a book by Janet G Cruz...The Dementia Caregiver's Survival Guide. It really helped validate my feelings as a caregiver. She also talks about suggestions for cognitive therapies I had not heard about to help slow the progression of the dementia. I hope you find it informative and helpful for yourself and your husband.

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