Mother recently diagnosed

Bmomma

Hello. My 72 year old mother was recently diagnosed with dementia in November 2020. However, I have been noticing changes for about the last 3 years. The sad part is, she has been the sole caretaker of my stepfather for the past 9 years who has Alzheimer's. It's very stressful, very sad, and I am at a loss as to what to do. It's a very complicated situation, too much to put on here, but overwhelming is an understatement. I am sad about so many things, angry, frustrated, confused, scared. I have no family support. My mother is my best friend, she was the person I could talk to, to lean on, and now it's all gone. I miss my old mom, and I'm having a really hard time coping with all of this. Currently, my stepsister who is a home health care aide is staying with them, and others volunteer to stay with them on the weekends. My stepsister is getting paid out of their personal funds, but if we continue this route they will not have much left. The idea was to keep them together as long as possible, but my stepfather is in late stages of Alzheimer's; sundowning, can't control bodily functions, can't care for personal hygiene, and my mother is more in the mid to moderate stage of dementia. My stepfather belongs in a facility, and I'm not certain what to do with my mother. She doesn't want to go into a home, she would require 24 hour care to keep her in hers. I am 44 years old, have a young child of my own, am married, work, and don't know that we would be able to take her into our home. We travel, my child plays travel sports, my husband works, and I have one brother who already said he can't take her in, and is of little to no help anyhow. I also have to think of my child. I feel guilty, I feel a million things none if which are very good. I'm so depressed, so alone. I don't understand why this is happening. I miss my mother. I know she is here physically, but  in all the ways I've had her for all the years I've known her she's gone...and I want her back so badly. I want my theatre buddy back...never in a million years would I have thought my family would be going through this. I don't know what to do.

MN Chickadee

Hi BMomma, I highly recommend you see an elder law attorney if you haven't yet. You must have proper paperwork in order for your sister to be paid out of their money. With two parents with dementia it is likely you will need to get them on Medicaid sooner than later for care in a facility. The government can look back 5 years at their finances and large sums cannot be moved or given away or else it will delay/prevent qualification for long term care assistance. A legal care agreement shows the payments made to your sis were legit and for services provided, and not an attempt to hide assets. If your mother would require 24/7 supervision to live at home she is probably also a candidate for memory care. I I would get to the attorney to get all documents in order, and they also tend to have info on what facilities are better than others and accept Medicaid. Moving mom and dad together into one room at a facility might be the best option so they can be together and staff can help with all the personal care for dad. Mom will progress and need more of this help before you know it and then she will be set up for it.  I know how sad it is and overwhelming. Having to do all this while grieving the loss is awful. But we do the best we can. There are no perfect answers, sometimes not even any good ones. We do the best we can with the information and resources we have at the time. 

You might also utilize the Alzheimers Association hotline. They have social workers trained in all things dementia who can help work through these issues. Ask to speak to a care consultant. The service is free. 1800-272-3900.