Follow
Share

Finding that I need help to cope caring for husband with Asperger's. What is needed is a perspective and techniques to accept his behaviors from those who understand the aspie and how hard it can be to tolerate the changing behaviors and other similarities to mental illnesses, even though it is said that it is not a mental illness. Aging is changing him, and stress from being employed may be getting to him. Then, it follows that I am stressed too.
Here is a post from a caregiver from the past, whose writing has helped me reach out today.
"Jessebelle" wrote:
My father had what would now be called Asperger's. There wasn't even considered up until around 20 years ago. With the increase in its popularity on TV (Boston Legal and Parenthood), it is being diagnosed more frequently now. As sometimes happens, it may be being over-diagnosed.


People with Asperger's can be very different. Some can be very high functioning and can learn to get along with people. Others can have difficulty throughout life in holding a job or relating to people. The aim of professionals now is to teach people with Asperger's to get along in the world.


There are a few things that are pretty much the same for people with Asperger's. They do not bond with many people. They may bond with one person very closely. Also, they do not read people well. They have a hard time understanding the expressions or intents of people. Smiles, frowns, tears are hard to understand. They do understand chaos, though, because it jeopardizes the control of the environment. Loss of control can lead to meltdown, which can be very traumatic to everyone. People with Asperger's often have the need to control the environment to prevent internal chaos and meltdown.


Asperger's is not really a mental illness. It is something a person is born with. Often people with Asperger's are obsessed with one thing and excel in it. Some people say Albert Einstein and Bill Gates have Apsperger's. I don't believe that, because they were/are such caring people. I just think both of these men are geniuses. Geniuses can act a bit odd at time, too.


My father was able to function during most of his life. He never made friends or bonded with anyone except my mother... and I'm not even sure of that. He was able to work, but shunned social life, dreaded his children, and couldn't tolerate his grandchildren. He was a fabulous mathematician who was into labeling and lists. As he grew older, he became more autistic, withdrawing to a single chair. He became deaf and totally separate from the world. He developed mixed dementia, but we didn't even realize it until they did the brain scans on his final week of life. He was so separate from the world that the dementia didn't make much difference.


But strangely enough, he was kind and content. I miss him now that he's gone. Having grown up with a parent with Asperger's, I do know how important a sense of self control is. Someone with the disorder needs to be able to control what goes on around them. We have to fit into their world, because we cannot expect them to fit into ours. It is very hard for them. As written before, loss of control can lead to internal chaos, which is when Asperger's looks like mental illness (meltdown). Asperger's itself does not lead to a nervous break unless there is that loss."


Please feel free to go on without me, as I cannot bear to answer questions right now. I will be reading.
Thank you.

Find Care & Housing
Thank you Gershun!
He could not call the auto club today to get our car towed home. Out in the heat, it was me who made all the calls, coordinated lunch, rides to work, tow truck home. Then, he refused to get in the air conditioned tow truck to be dropped off closer to work (free).

It was my least favorite thing to ride home in a tow truck. But the driver, saying goodbye, said I was a really fun lady. Lol.
Helpful Answer (2)
Reply to Sendhelp
Report

Wish I knew more about Asperger's so I could support you more Send. I'll say you are always in my prayers at the risk of the wrath I may get for saying it from our non-believing friends. But you are.......................so there! (((((Hugs)))))
Helpful Answer (1)
Reply to Gershun
Report

Always waiting for the other shoe to drop. I don't dare get too comfortable.
If I do, the surprise is greater when dH messes up.
Helpful Answer (2)
Reply to Sendhelp
Report

Thank you Cwillie, I read that, and was stopping to read it again. It was a helpful perspective from a self proclaimed aspie. It was good to know through the author's eyes.

Yesterday was a very hot day, and when we both went outside for a moment, we both got dizzy. I asked a neighbor, who said she got dizzy too going outside.
It has been this hot before, and there was no dizzyness.

Of course, that is not the real issue. I feel so inadequate to continue being there for my loved one, no matter how hard I try. At the same time, I realize that no one is going to help him so that he can keep working and feel good about himself.
When I am unable to drive him, in this heat he takes Uber, an expensive way to go. If I were a financial wizard, I could figure out if the job he has is costing more than helping. So, with more income, came more worries, even health insurance and taxes, all falls to me now. It is surely a challenge. Come to think, it has always been all my responsibility. I don't know what I was thinking after all this time being in emergency alert mode, hypervigilant, and burning out.

The information I received about a shorter life span for him a few months back had really upset me. I chose not to believe it. His parents both have lived beyond 75 +.
Helpful Answer (2)
Reply to Sendhelp
Report

Have you done any web searching about aging and asperger's? I found a few interesting articles, one woman mentioned that her father seemed to revert to more of the behaviours he had learned to compensate for... wait, I'll try to post a link:
Psychology Today - Supporting Elder Aspies by Liane Holliday Willey Ed.D.

https://www.psychologytoday.com/ca/blog/the-pragmatic-aspie/201108/supporting-elder-aspies
Helpful Answer (5)
Reply to cwillie
Report

Send, hugs.
Helpful Answer (4)
Reply to Guestshopadmin
Report

Jessebelle expressed herself perfectly, and it touched my heart today. One of those older, archived threads that I neeed to read. I am glad the posts are still there.
Anyway, as dH sleeps 7-8 hours on Sunday, I now have an action to take putting the kitchen back after an ant attack. Harder to do with my own fibromyalgia pain today. I will push through the pain though. He needs less stress.

It helps so much to hear from others on this. Thank you!

I no longer want to scream. It felt like he was doing things on purpose, when in fact, he requires a rescue from stress causing a possible meltdown.
Helpful Answer (2)
Reply to Sendhelp
Report

I'm sorry Send. I wish I had something to offer. I hope that someone can give you great advise to better your situation. May the Good Lord lighten your load.
Helpful Answer (3)
Reply to SueC1957
Report

Asperger's has kind of become the disorder of the decade and while I think that is helpful in that it reduces the stigma it is also unhelpful because all we get are stereotypical images. I don't know anyone personally who is on the spectrum Send, although I do have family members who have a few similar traits.
I'm not sure a lot of information is available about aging with Asperger's, possibly because, as JessieBelle pointed out, those who were higher functioning often were not diagnosed, and also possibly because previous generations in general had a lower life expectancy.

PS - I found it heartening to read of JB's love for her father and his ability to form a family unit, even if it was a small limited one.
Helpful Answer (3)
Reply to cwillie
Report