ES advice for accepting diagnosis

DORI321

DH was diagnosed with younger onset Alzheimer’s late last year.  He is ES stage and does well on the surface but worries that others will detect that he is impacted.  I have taken over most of the day to day and I want to give him the freedom to enjoy his time, but he struggles and argues with me if I try to take over.  He is dependent on me for so much but fights it.  He has only told a few people about the diagnosis and does not want to share with others, including some in his family.  He is struggling with the diagnosis himself and not doing well coming to terms with it.  His anxiety has been high for a while, and the doctor explained that was a symptom from the frustration of things not working.  And he is rightly terrified of what is to come, but talking about that just seems to make the fear worse. I’m dealing with the pain of this diagnosis too, but I’m better at coping than he.  But as he will point out, I am not the one with the broken brain.

Do you have advice on how to support LO to come to terms with a diagnosis?  Advice has been “to live your life” but when he is so anxious about screwing up or seen as “stupid,” it isn’t that easy.  And the things he wants to do, are not easy or even possible for him.  I think he should share with more family and friends, but I also know that some are scared or put off by the disease and can disappear while others may step up and engage.  But family is also all in another state so there is only so much they can do. But again, he resists because he is not ready to be “labeled.” 

I’m struggling trying to figure out when I need to let him “live his life” and when I need to set limits which I know will lead to a fight.  And I know it only gets harder from here.  I’m trying to figure out what I do now to make it better for when it gets much worse. We haven’t had an easy marriage but have made it by being independent and supportive of the other’s interests.  Now neither of us has the freedom to get away from this disease.   But I need to get away sometimes, but when he can’t he sees it as disloyal.  Guilt still works. 

I recognize the stages of grief here.  Do you have any thoughts about how to deal with the early stage and dealing with the diagnosis in any way that helps later?

Ed1937

Welcome to the forum. Sorry you need to be here, but you have found a good place to get help and information. People here "get it", so post about anything that concerns you. 

Early onset has it's own set of problems, and we have several on the forum that are on this road. They have been where you are at any given time, and you will find great information and help here. One of the very first things you should do is to consult with a certified elder law attorney. This is absolutely critical, and should be done soon. If you wait too long, you will surely be sorry. Even if you think you don't have enough financial resources, you need the attorney to best protect what you have.

Avoid arguments as much as possible. If he tries to handle the bank account, keep a very close eye on him. The time will come when you have no choice but to take over.

Here is a link that might help. In fact here are two links that might help. https://www.alz.org/help-support/caregiving/stages-behaviors/accepting_the_diagnosis  

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf  

????

I am somewhat in the same boat.  My wife found out she had Alzheimer's in November.  We made the decision to be up front with relatives and friends.  We did this hoping they would be understanding and supportive.  We have experienced mixed results from our decision.  I am learning that there are no "right answers" to what we are experiencing.  You have to do what you think is right and do not look back.

jfkoc

Dori...looking back I think I got more right than wrong but looking back I think much of the right was by chance.

Two words that seem to help are attitude and approach. Both apply to you. The one action word would be listening. Not much physical action but powerful. Listen for the emotions behind the words and listen to the silence.

Take each problem as it comes and work out the best solution as you see it at that moment. 

Live your life? Absolutely applies to both of you but if you choose to take on the role of caregiver your living your life is going to change. 

I think the  best tool for dealing with this disease is education....reading and sharing. Those of us here know about dementia. We either have it or are caring for a person living with it. We know, understand and are here to help you navigate.

Finally....do get any legal/financial loose ends taken care of.

Rescue mom

Welcome, but sorry you have to be here. As others say, it’s the club nobody wants to join. But there’s  been far more helpful and useful advice here on this forum than anywhere, so look through the questions and come back with more.

All that said, I can’t be much help with your questions except maybe getting away. My DH was further along at Dx and was quite fine to “let” me take over pretty much everything. Telling people was almost irrelevant, he was obviously impaired, but I thought better for people to know Alzheimer’s than to speculate with nasty rumors. Everyone was supportive when told.

As for getting away…here’s my experience: we traveled a lot, together and separately, business and fun, before Alzheimer’s. Then he did not even want to travel, did not want me to leave either.

Long story short, I had physical health problems and my doctors insisted I had to have respite time away, or I would be unable to care for him at all. One told me to think of kids who cry about going to day care or school. They still go, and usually do fine. The alternative was me being incapacitated.

I got family to take care of him, and left. He cried, pitched a fit. But the family  tell me he’s fine within minutes after I’m gone. Do I feel guilty? Yes. But I also enjoy a break; enjoyed more than I expected, when I get back, he quickly forgets I was gone.

Your DH doesn’t sound that far along, but you still have to take care of you, for the long haul. Even with guilt, breaks are often necessary for you to continue caregiving.

Marie58

Dori321 and ????, welcome both of you to the forum. It's a great place to learn, ask questions, vent, and more. 

My DH was also diagnosed with EO, almost 6 years ago at age 60. His doctor put him on an anti-depressant which I think helped him deal with the diagnosis. Maybe you could look into that.   In the beginning when DH understood the dx, he too was very frustrated when he couldn't do things. We bought a new grill and a kit for a shed. Both needed assembly. Previously he would have put them together easily with barely looking at the directions. I started saying, "Let's do this together" for just about everything and he let me help/do things. You Tube helped me a lot! I used that phrase for a long time, whether putting a grill together or helping him brush his teeth. Fortunately, he accepted that.

As far as telling others, I think it helps so people understand the changes they are sure to see. My DH originally went to his PCP on the advice of a colleague. On the day we got the diagnosis, we attended that colleague's retirement party. Someone asked DH if he had any test results back yet. Without missing a beat, he said, "My brain is shrinking". My jaw must have hit the table. I don't think the dx had sunk in yet and/or I was in denial. Anyway, I followed his lead and didn't hesitate to share it when appropriate. 

A few months after dx, we did go on a big trip that had been on our bucket list. We continued to do as much as he could for as long as he could, including outdoor activities like bicycling and skiing, until he clearly couldn't do it or didn't enjoy it. 

I agree with others that education is important and to see an elder care attorney asap. I waited longer that I should have for that, but it turned out OK. Grief is real, as you said. For both of you.

Blessings to you and your DH.

JoseyWales

I was going to suggest antidepressants, but Marie beat me to it.

Seriously - he knows he has a terminal illness with no chance of getting better. I'd be upset and have a hard time trying to enjoy life.  DH had such a hard time with that - antidepressants helped some.

Iris L.

It will help a lot to become proactive instead of reactive.  Read a lot and post a lot.  Learn about anosognosia.

Iris