Autistic and caring for mother with dementia

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I was diagnosed in my early 30's. I'm 39 now and have never told my family. I've always been known as the weird and difficult one but never the autistic one. Autism just wasnt thought of when I was growing up especially not for higher functioning women even despite my strange behavior.

Now, for the last two years, I've been helping my father take care of my mother with late stage dementia and I'm barely holding together. I cant function with all this need. My days are no longer under my control and people show up at my home unannounced and I have no schedule whatsoever. I'm bombarded with family wanting to gather for this and that often last minute that causes me to flip and it's always just the excuse that calm down its family. Like because someone is family they have the right to be rude to me.

I moved far away for many years so I could be alone but moved back to Ohio just to help my dad cause nobody else was and I loved my mom but I feel like this is killing MY sanity and all of my suggestions of what i need to function, when i can even get them out, are met with frustration from my family as if I'm overreacting all the time. My family doesn't know anything about autism except the rain man type stuff so if I even told them they wouldn't understand and just give me the same look they always do.

Anyone else on here ever have to cope with caretaking of a loved one with dementia or similar situation?

First off, make sure your mother is getting all the help she is entitled to get and that will be covered by your parents' insurance. Do you have a home health aide? Also, you and/or your father might be able to receive some money from the government for being a caretaker. Talk to a social worker about this.

Second, it seems to me that you probably are going to need to disclose your diagnosis to your relatives, as that may be the only possible way to convince them that you have genuine needs and are not just being an overgrown spoiled brat or something. I would suggest that you put it in writing, with links to good online sources of info about ASD, and send it to them in email, if you have difficulty communicating with them in person.

I agree to Mona, thought I'm afraid grown up people are often reluctant to new knowledge and they may resist accepting the news... but it seems it's impossible to go on without even trying.

I would flip the coin of "they're just family": Okay, so they're just family, I don't need to act or pretend next to them, I'm locking myself in my room because I need some silence right now. They're only family, I don't have to make a party for them.

Maybe instead of disclosing about autism and dealing with the disbelief, it would be easier to make up an excuse like migraines or something to get some alone time and rest. People with dementia can be overwhelming, and you have to take care of yourself. I agree about finding a social worker or home health aide if you can. Hope things get better for you.

Sorry to hear that.

If it gets really close to the end and a doctor will sign off on that you can get hospice care via Medicare.


Hospice care
If you have Medicare Part A (Hospital Insurance) and meet all of these conditions, you can get hospice care:

Your hospice doctor and your regular doctor (if you have one) certify that you’re terminally ill (with a life expectancy of 6 months or less).
You accept palliative care (for comfort) instead of care to cure your illness.
You sign a statement choosing hospice care instead of other Medicare-covered benefits to treat your terminal illness and related conditions.
Your costs in Original Medicare
You pay nothing for hospice care.
You may need to pay a copayment of no more than $5 for each prescription drug and other similar products for pain relief and symptom control while you're at home. In the rare case your drug isn’t covered by the hospice benefit, your hospice provider should contact your Medicare drug plan to see if it's covered under Part D.
You may need to pay 5% of the Medicare-approved amount for inpatient respite care.
Medicare doesn't cover room and board when you get hospice care in your home or another facility where you live (like a nursing home).

Medicare will pay for transport to a hospice facility and the costs of staying there, allowing your father to keep the house.

https://www.crossroadshospice.com/hospi ... /dementia/
Patients with dementia are eligible to receive hospice care if they have a diagnosis of six months or less to live if the disease progresses in a typical fashion. Once a patient begins experiencing any of the above symptoms, it is time to speak with a hospice professional about how they can help provide added care and support.

A hospice facility typically has a team of workers to handle the Medicare and insurance issues. You should also be able to enlist the help of a social worker.

Can you go to your room and relax when you are feeling overwhelmed? Let your family handle it and your dad.

Good morning MayD39,
First and foremost I hope your Mum will get the best care possible.
I sense that you are a very loving and caring person and you will help those in need, although for us Aspies this can lead to so much stress on ourselves.
I did care (for many years) for a guy who lived with Schizophrenia but doing so had a big impact on my mental and physical health.
I have told my family that I am Autistic HFA and their response was, 'We don't understand and besides Bob your just the weird one in the family.' Hence I do not ever mention to them my Autism.
MayD39 you are a wonderful person and I do hope you always remember that.

First, welcome. I don't have any advice on the care, I just wanted to offer support. What you are doing is very hard under the most ideal of circumstances, so be patient with yourself. My husband is the worlds worst about last minute invitations. Only very few know about my Asperger's, when I get overwhelmed I just go to bed. They probably think I'm rude, but I just don't care anymore.

Pleasure to meet you!