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My mother is 91 and has turned into her mother. We come from a Welsh backround where the oldest women is the matriarch of the family. She expects everything to be done her way and in her time. Meanwhile I have been being treated for breast cancer and have had many complications. I thought she would understand because she had breast cancer. She still expects me to do everything I did before. My poor autistic son, God bless him, has tried to step up, but has reached the end of his rope. I've tried talking to her, but in the end she doesn't remember the conversation. I don't know what to do. I have little support from my sister and no support from my brother. They were her favorites. I was Dad's. I always thought if something happened to my mom first I would talk care of Dad, but if anything happened to my dad, which it did, one of them would take care of Mom. Well, I the fixer in the family and I promised my dad I would take care of her, now I feel trapped. It's been 28 years and this last year is going to drive me to drink. How do I deal with her memory lapses and her feelings of persecution and neglect when I do what I need to take care of me?

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First, it might (or might not) help to realize that she isn't doing this deliberately. What you describe are common symptoms of dementia. Add that on top of the cultural background of being the family matriarch and you've got a difficult person to live with. I assume that in raising an autistic child you have had to learn to make allowances for some behaviors he can't help. (RIght?) It might help to think of your mother in the same way. She now has a mental impairment that she can't overcome.

Trying to reason with a person with dementia can be a verrrrry frustrating experience. Not only do they not remember the conversation, as you point out, but often even if they nod and seem to get it they are off in their own reality that doesn't match ours while you are having the conversation. You cannot reason with someone who has lost the ability to reason.

This may be a good time for a thorough geriatric evaluation for mother. I think it would be useful to know exactly what you are dealing with, and also whether there might be some treatment available that would help relieve some of her negative feelings. (She is not getting any joy out of perceiving persecution and neglect, either.)

Next, you really need to look after your own recovery. I know that you know that. The question is how? For one, if you lay it on the line to your sister and brother, might they step up, for a limited time? What would their reaction be if you said, "I'm having some complications from my surgery. My doctor says I need rest and quiet for a month. Can each of you take mother in for two weeks?" You can't know for sure unless you try. If you can't arrange respite that way, arrange for it through professional channels. There are many places that take dementia patients on a short-term short-notice basis while their caregivers deal with health problems or go off to the Bahamas. This should be paid for out of mother's funds.

Maybe, just maybe, short term respite will not be enough. Maybe after 28 of loving care, it is time to turn this over to professionals who are trained to deal with dementia symptoms, who won't take the claims of neglect personally, and who get to go home after an 8 hour shift. Maybe it is time to visit pleasantly with your mother while someone else has the day-to-day responsibilities of her care.

Do you have a very close friend who could help you with some of time-consuming tasks of setting up an evaluation for mother, researching places that offer respite care, staying with mom while you visit the likely places, etc? I would do that for my best friend -- but she'd have to ask me, because close as we are, I still can't read her mind.

Hugs and best wishes to you, in dealing with your difficult mom and in recovering from your cancer.
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I have a son who has autism and I have a elderly relative living with me so I'm saying this with understanding. I'm also sending hugs to you!

What is being expected of you is completely wrong. Who expects anyone who is sick with cancer to keep up doing everything? It is time to find another place for your mom. I would tell brother and sister you have more than enough on your plate with taking care of your son and yourself and you are done taking care of her right now.

And honestly, what the heck is the matter with your brother and your sister that they haven't figured this out on their own? They should have already approached you about a change the minute you were dx'd with cancer. What is wrong with them?

And as you know your son only has so many resources to deal with life--and if he is at the end of his rope, and there is no change in her in sight, it's time for your mom to be placed somewhere else. Your son is your number one responsibility so that means your health is also your number one responsibility too. You are not a bad person if you do that...tell your siblings you are done and that the three of you need to find a new place for mom right now. You are right to take steps to take care of your son and yourself.

And I agree with Jeane in that they should take her right now while you all look. While you have been able to make allowances for your son and are a wonderwoman for doing that all these years, it is completely unreasonable and dangerous to the health of you and your son for your brother and sister or anyone to continue to expect you to deal with not only autism but also dementia in your mom.

I agree it's time to turn over her care to professionals who are rested and not dealing with cancer and trying to be a mom to an autistic son at the same time. If the health of the relative who is living with me changed to include dementia and that started to affect my son in any way, I would not hesitate to make a change in her placement out of my home and into somewhere else. It's ok for you to make a choice to take care of yourself and your son.

Sending more hugs and praying for your quick and lasting recovery and for peace to enter your home again!
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Why do people always think that 'taking care of' a parent automatically means the parent has to live with them? I don't get it I guess. My son has my permission to dump me wherever he needs, to 'take care of' me.
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Thx everyone, you have given me alot to think about. I feel so guilty at times and it's nice to hear I'm not just being selfish.
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