Recently I received a comment on my “Dementia Care Training: Keeping Our Loved Ones Safe” video. The comment reads:
“My mother is 78. It seems nobody in my family wants to acknowledge that Mom has this. I am one of seven children. I live at home with my parents maybe because they don't want to accept it. I see it every day of my life and it hurts terribly because I'm here. I have to deal with it. It's not fair. I have enough to deal with in my life on my own. How do I get my family to understand that it’s not an out-of-sight/out-of-mind situation?”
My heart is with the person who left this comment! And my response is too long to fit in the comments section on YouTube, so I thought I’d share it here. I hope this helps the person who left the comment, as well as everyone who’s affected by Alzheimer’s disease and dementia—persons living with the disease, family care partners, professional care partners, and everyone who touches the lives of individuals with dementia.
Denial is a great coping mechanism. Coming to terms with the fact that a loved one has Alzheimer’s or another form of dementia is painful. I’m sure you know firsthand all that it means for your mom to have dementia. Many emotions come up, including sadness, fear, anger, anxiety, etc. For some, it’s necessary to push this reality away in order to cope. That doesn’t mean this makes it easy for you or for your mother, and it’s best for siblings to work together to handle such hardships.
My recommendations are to understand that this lack of acceptance is likely a form of coping. Have a family meeting to describe what your mother’s dementia looks like on a day-to-day basis. Describe the challenges for you and your mom, and ask for whatever help your family can provide. If necessary, hire an elder care manager or therapist to help your family work through this issue. I don’t know the dynamics of your family or how you normally work together on tough issues, but I am sure that history will influence the ease of this discussion.
When communicating with your siblings, try to be concrete and objective about your mom’s changes and challenges and the help she requires. It’s best to be as emotionless as possible when you’re trying to educate your siblings about what’s happening. If you’re struggling to educate, consider asking your siblings to meet with your mother’s physician so they can hear from a professional about the disease and what it means for your mom.
Once your siblings are able to acknowledge what’s happening, they will likely go through the stages of grief. Encourage them to read books about Alzheimer’s—as well as grief—to help them work through this. Also, support groups held by local Alzheimer’s Association offices are of great help as people share their experiences, their good days and their bad days, and support one another.
In the meantime, as your siblings work through this, take care of yourself. Find the one or two family members who are ready and able to support you and your mom now and take advantage of that support. Encourage and help the others to come along as best and as fast as they can, but get the support that you need now. Whether that support be from friends, family, an employee assistance program, or the Alzheimer’s Association, please make it a priority. We are thinking of you and your mom.