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Very young. Progressing rapidly.
itsPhil
Posted: Tuesday, June 23, 2020 6:28 PM
Joined: 6/23/2020
Posts: 1


I have a spouse who is 55 with EOA. She can't find words, can't remember conversations that occurred moments before, and cannot be left alone for any length of time.  And it's getting worse.

She refuses to take evaluative cognitive tests. She does not see the value in tracking how quickly she is eroding away as a person. I can't blame her. We have a Neuro, and the diagnosis is official, but she doesn't want the care.

It's like being a single parent. She can't drive, do the bills or cook and plan the household like she used to.. and its killing her. I am honored to be the one to care for her, for as long as I can.

When I learned the diagnosis, i dropped everything and moved us back to our old neighborhood in Montana. I'm building a dementia safe zone for her out here, and I will do everything I can to keep her home with her dogs...who are the center of her universe.

I'm 57. I have no idea how long this will play out, but I know how it will end, and its is quite sobering.

Anyway, I hope that I can find support (here and locally) and ideas on how to make the best life for her here at home ( in Montana). I look forward to hearing your stories. If you are reading this, I'm sorry. I'm sorry any of us have to be here, and I get it. I wish you the best.


zauberflote
Posted: Wednesday, June 24, 2020 7:59 PM
Joined: 10/24/2018
Posts: 1432


Phil, if you reposted this on the Spouse/Partner part of the forum, you'd probably hear from many spouses who are or were in your shoes, and who have much wisdom. This particular board here isn't as well traveled.
David J
Posted: Friday, June 26, 2020 11:38 AM
Joined: 2/15/2020
Posts: 275


Phil-

I agree with Zauberflote. The Spouses board can be more helpful. I decided to check out this board today, so I found your post by chance.

I was/am in a similar situation. My DW was diagnosed with MCI at 52. She is now 65 in full-on AD. In her case, progression is slow.  That gave us several years to plan and enjoy each other before the inevitable. I retired three years ago to become her full time caretaker and travel a little bit while we could.

You are right that people here care, and can help in practical terms and give you an emotional boost as needed.

I am sorry you are in this situation, but it can be rewarding too. As you said it is an honor to be her caretaker. Take care and don’t be bashful if you need to vent. This is a safe zone. 

Dave


Jo C.
Posted: Friday, June 26, 2020 5:44 PM
Joined: 12/9/2011
Posts: 11596


Hello Phil and a very warm welcome to you.  I just wanted to let you know that someone has kindly initiated a Thread for you on the Spousal Forum, so you may want to go and take a look.  There are multiple spouses on that Forum who are in your same situation and also many males who are primary caregivers for their wives.  There is a lot of experiential wisdom to be found there from others who are farther along in their journey.

We are all here in support of one another and that now includes you  too.  Hope to see you on the Spousal Forum soon.

J.


CEOofEverything
Posted: Sunday, December 27, 2020 9:00 PM
Joined: 11/1/2020
Posts: 13


Hi Phil,

I’m in a very similar situation as you with my husband who was diagnosed. He’s 59, I’m 54. 

I hope we can connect and support each other through this. 

 


alz+
Posted: Wednesday, December 30, 2020 10:36 AM
Joined: 9/12/2013
Posts: 3583


PHIL!

you won't regret what you are doing. Environment is the treatment for ALZ. Letting her have her dogs is wonderful. This is super kind and smart.

I don't know what laws are Montana but CBD oil has given me years back. You know if it works in an hour. There are videos of people taking it on YouTube and you can watch a person go from stressed pacing to relaxed conversation in 15 minutes after taking it.

I personally think it is smart to ask other people with the illness rather than their caregivers, but in the minority on that. My husband abandoned all help for me and then got mean about it so I had to leave everything and move.

When I was first diagnosed I found an article online by a woman who took her mom from a nursing home and brought her home to her farm and let her be. Within months she was up, walking, feeding animals, happy instead of doped up bed ridden. She was content until she passed away. I thought THAT is my dream for my dementia future.

In the end I created it for myself but I would not wish my struggle on anyone.

Please come back and share more as things go on.

love and courage


CStrope
Posted: Friday, January 1, 2021 10:21 PM
Joined: 11/19/2020
Posts: 108


itsPhil, I understand about your wife not wanting to take the evaluation tests,  my DH is the same way.  He is scheduled for cognitive testing on 1/13, and I'm sure it will be a difficult day for both of us.  He was an educator for over 30 years, so he has decided that he can study enough to do well on the test. He is currently trying to work through various worksheets in a book designed for 1st graders, and it's not going well. 

So for now I just let him study and hope that he is accepting of everything that happens on the 13th. 


1965
Posted: Monday, January 4, 2021 11:11 PM
Joined: 12/1/2020
Posts: 8


In response to CStrope. From my experience about studying for the MOCA or any other dementia test is almost impossible. The reason why I say this is due to the fact that things just don't stick or remember anymore. He may have a good day and have good recall or it just may not be there for recall. I find that it is hit and miss. I am not trying to give anything negative, It is just the way I feel or seem to be when it come to testing. Take this message for what it is worth. 

Thanks for reading
Mary Lu
Posted: Friday, January 29, 2021 11:27 PM
Joined: 1/5/2021
Posts: 6


Hi Phil,

Im in a similar position. My husband only 57 and showing signs of EOD. We have not had a diagnosis yet. He is still working, so I am in the situation ( because of Covid) watching the world crashing down around him. I feel so helpless and completely useless as I I can not interact with his employers for fear of offending him, and what any legal ramifications are. 

 


Iris L.
Posted: Saturday, January 30, 2021 2:26 AM
Joined: 12/15/2011
Posts: 16940


Mary Lu, if your DH can access his most recent annual employee review, he can note if there are any warnings of poor performance.  Note that poor judgement is an early sign of dementia, earlier than memory loss in many cases.

If there is a poor review, he can consider taking a short term leave of absence from work in order to complete a thorough medical and neurological work-up with an internist and a neurologist.  This can take a few weeks or more. There are many possible medical causes for what you might be observing.

If, after the thorough evaluation, the conclusion is a diagnosis of dementia due to Alzheimer's Disease, he can apply for a long term disability pension from Social Security.  There may be other programs that he could be eligible for.  It is a good idea to consult legal advice regarding employment and/or disability benefits.

In the meantime, I suggest you visit the Spouse/Partner board for more support. 

Iris L.


Mary Lu
Posted: Wednesday, February 10, 2021 5:10 AM
Joined: 1/5/2021
Posts: 6


Thank you Iris. It concerns me that  I have to worry about the legal and financial aspects of my DH condition before I can take care of his medical and mental well being. 

I will post on the spouse and care givers board.