Follow
Share

13 years ago, my now 78 yr old husband was diagnosed as being on the Autism Spectrum. At the time it was very helpful in explaining so many perplexing issues. But during a recent hospitalization, the staff alerted his doctor to signs of early dementia.
If I hadn't noticed increasing memory loss myself, I would have asked "how did they know?" Because many of his behaviors have been there all along. Actually, he seems much calmer and more mellow than he was years ago. But, he still has moments of aggression in public, and he still is very stubborn.
In all the 19 years we've been married, I could not get him to discuss making a plan for our future. Now it is impossible to engage him in a discussion about our life together. And I feel overwhelmed trying to make it happen all on my own.
I've just started seeing both a therapist and a social worker, as I believe we need to live in smaller place, closer to services, etc. But I'm wondering if anyone else has had a similar experience. Thank you.

This question has been closed for answers. Ask a New Question.
Find Care & Housing
Since I learned more about autism in the last several years, I have to wonder if mthr was on the spectrum as well. She was brilliant in her day and even when she had her complete psych eval for a guardianship hearing when she had a hemoglobin of 10, her psychiatrist was amazed that she still scored in the 120s on IQ. It had to have been terribly high back in the day because she was so compromised at this point.

Mthr lacked executive function and hoarded. When she was in the MC and was hoarding things, it was written off as a dementia symptom. The staff could not understand that she *always* stored every magazine she could find in hidey holes! I can understand your frustration with seeing the medical staff who evaluated your husband seeing his normal behaviors as abnormal.

Your husband has what he has, and you know him best no matter what label is used. This site has given me good strategies for dealing with people in general, so I'm sure you can find some very good things here!!
Helpful Answer (1)
Report
MJInslee Oct 8, 2019
Oh, Surprise, thank you, so much for your answer. Your mother and my husband have some commonalities, for sure. He is a terrible hoarder. And has a very high IQ, at least did many years ago. When the dementia suggestion/diagnosis rose on the horizon, I decided I would not be the one to tell him. As you said "he has what he has" and I'll do my own researching, etc. I'm not afraid to ask his MD about his condition, and usually, the MD is good about suggesting things to my husband, as the MD has more credibility with LO than I do.
I will keep these answers in my bookmarks, and read them for moral support! It was lovely of you to take the time to respond. Thank you.
(1)
Report
I am with Barb in wondering if the staff was aware that your husband, to YOU is not a lot changed, and that he is on the spectrum already.
As to things to be addressed, you are right, and it is time, and your ideas starting out are SOUND. Have Wills, Trusts, POA for financial and health been done? If not it is time to address that. What support will you have in so far as family? Children? Siblings? Fast friends? What kind of financial support will you have for your future together?
You are doing everything well, to my mind. I particularly like SocialWorkers who deal with life change work for this sort of stuff and that person can be a great guide to you. If you come up with specific questions many on the forum will have walked the path you are on.
As to what changes dementia might add to someone with a diagnosed autism? You cannot know. A diagnostic workup will have to be VERY carefully done and likely with you present, as you know what problems are part of the autism, and not a newly diagnosed dementia.
Wishing you good luck going forward and do know you cannot possibly address this all at once. Start a list. Arrange it in most crucial things first. And on you go.
Helpful Answer (2)
Report
MJInslee Oct 7, 2019
Thank you, AlvaDeer, you've given me some really good suggestions. The list for starters. There are wills, but of course, that's the most we were able to get done. He has NO family. I have 2 grown children, who want me to just leave him. As in, now....! They are aware of the past years of struggle, including my husband squandering a good size inheritance. (Betting, etc) Our financial future is dim. We both have long time friends, but I found his to be reluctant to visit once he was home, when his demeanor had changed. He was very gregarious, and now is subdued. So far, he has refused to follow through on his doctor's request for an evaluation. He doesn't accept any suggestion his mind is changing.
I am pretty much on my own in caring for him. He is eligible for VA services, which I guess I will pursue as far as I can without him. He isn't willing to present himself at the nearby facilities we have. Today I am worried about monthly bills. He's always been very poor about paying on time. And now I am worried he has not given any of them, any attention. He's very guarded about what he considers "his business"...(all the money! of course). It will make him angry when I ask for the status of this month's bills, for example. Any inquiries by me, make him very defensive and angry.
I really appreciate your answer. I have been reading this forum for some time. Now it's part of my daily routine! Thank you, so much.
(1)
Report
MJ, was the hospital staff aware of the AU diagnosis?

The reason I ask is this; I have a clinical background in ASD diagnostics. Several of my colleagues and I were also dealing with parents with dementia. It was a constant topic of conversation how much overlap there was. Not in terms of poor memory, but in terms of lack of executive functioning, poor prioritization and those kinds of skills.
Helpful Answer (1)
Report
MJInslee Oct 7, 2019
Good question, BarbBrooklyn.....I just assumed they were. But, in thinking about it, maybe his MD wouldn't have made a note re that? If he had regained more of his former self, once he was home, I might be confident that they did confuse the two, myself. But he definitely has "lost ground" in memory and some logic. I don't have a good vocabulary to describe what I observe, sorry. Losing his ability to recall all the baseball statistics, for example, which he formerly rattled off frequently, is something I noticed soon after he came home. His driving skills are terrible, when he once was a great driver. Thank you, for thinking of that. Makes me think I should ask his MD if that's appropriate info to have on his history.
(2)
Report
This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter