Need Advice(25)

Merlin39194

I have lived with Mother all my life and have a mental illness myself called Aspergers.   My mom was diagnosed with early onset Alzheimers and was given Aricept to take.  Looking back her memory has been getting worser and worser for the last few years and she tells me where she is putting normal household items like food and tools.   I have gotten to the point that I kinda drown her out when she is telling me this stuff.   Now I see that she wants me to know this stuff so when she asks me about where they are I can tell her.   I am worried I am not the right person to take care of her because my patience isn't that great.   My oldest brother lives 50 miles away and I am worried he won't be much help.  What should I do to prepare myself for when she gets worser then what she is?

M1

Welcome to the forum Merlin, you have found a good place for advice and support.  Read a lot of threads, as that may help you think about what lies ahead.

One thing that is always advised to do early on is to get legal matters settled---who has power of attorney for her, both financial and for healthcare?  If that hasn't been determined, it's advisable to get with a certified elder law attorney (CELA, you can look them up by location at nelf.org) to get that squared away.  As she gets worse, it may be more than you can handle, with or without Asperger's in the picture, and a CELA can help you and your siblings plan for where she might live long-term (and you, if moving her would also be a big change in your living situation) and what the financial options are.  If your oldest brother is not the best fit, is there another sibling who would be?  Certainly time to mull your options.

Good luck, as I said, this is an excellent place for support and advice and I'm sure others will chime in.

CatsWithHandsAreTrouble

Welcome to here as much as one can be during these times.

While getting the legal matters in order, also see about getting in-home care for her or potential placement in a proper facility. Every autistic is different but for me and my younger sister, our undiagnosed autism gets in the way of caring for our mom and it's put a huge strain on our well-being caring for her all the time. If you have a good support network, you might be able to incorporate some of that into the frame work of caring for your mom, if you should choose to do it.

Definitely read as much as you can about what to expect in this journey of the disease, or listen to audiobooks or play videos (teepa snow on YouTube is very recommend here on the forums). Think about what care your mom will need in the future and if you can provide that for her.

Patience goes a long way with dementia as the disease makes rationing and reasoning very difficult if not out right impossible with them. If you do lose your patience with her, try not to let it get to you. This is a very challenging situation and we all slip up and lash out. It's not your fault and it's not hers. It just happens.

Iris L.

You might reach out to a Care Consultant from the Alzheimer's Association for one-on-one support.  Call the Helpline at 1-800-272-3900 and ask to speak with a Care Consultant.  They can tell you about housing options and other resources in your local area.  There is no charge for this service.

Iris L.

harshedbuzz

Merlin-

Hello and welcome. I am sorry for the situation in which you find yourself and the reason you are here but glad you found us.

Being an adult with Aspergers (which is a developmental disability-- not mental illness although you may be more likely to live with depression and/or anxiety as well as other issues) could present a challenge in terms of caregiving. It's hard to make generalities given that if you've met one person with ASD, you've met one person with ASD. I worked as a forum moderator for a couple of support and information sites specific to Aspergers back in the day and know a number of adults with Aspergers and HFA diagnosis-- from working PhDs, to recent college grads working jobs below their education level, to brilliant folks who are struggling to adult who are living in adult foster situations.

Wherever you fit in that spectrum of outcomes at the moment, my concern for you would be the same as it would be for any young adult who is being sucked into fulltime caregiving when they should be focused on building their own lives. Since you say your mom is "early onset" I will assume you are a younger adult. Your priority should be completing your education, building a career and creating a social network/personal relationships. All too often, the youngest child or the one who is least successful in life gets the caregiving gig dropped into their laps even if they are ill-suited to the task.

I would encourage you to have a discussion with your siblings about next steps for your mom. Is the legal paperwork in place? Does mom have someone handling her money/assets? Are your siblings expecting you to care for your mother through the course of the disease? Do your siblings feel that they will need to provide care for you when your mom passes? 

HB