Helping Mom navigate her dementia diagnosis from 600 miles away is the hardest thing this letter writer has ever had to do.
Adapted from an online discussion.
Dear Carolyn: My mom has mild to moderate dementia, and I'm losing my mind. It's excruciating. The incredibly smart, compassionate, smartass woman I have loved my whole life is slipping away. She's 600 miles away, and I travel to see her roughly every month or so. She requires 24-hour care. I'm monitoring her aides in her home, doing bills, medical appointments, house maintenance, mail, etc. I have one sibling, but they are not very involved -- "too busy" -- and other family members are critical of my efforts but refuse to help, or have issues with drugs and alcohol.
I am getting very angry with them and the lack of support.
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About Carolyn Hax
(For The Washington Post)
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I'm trying to move her to a facility so that she gets better care, but she's combative, argumentative and terrified. She wants to stay in her home.
This is the hardest thing I've ever had to do. I work full time at a demanding job, I have three beautiful kids and a husband. I've been doing this for almost two years. I'm so sad and exhausted. No question, just would love to know how people get through this. My dad died seven years ago, so it really is me. I feel like my family is gone. I'm in counseling, but it is still so hard.
-- Sad and Exhausted
Sad and Exhausted: Yes, it is, I am so sorry. If one is available to you, please talk to a social worker who specializes in elder care and advising families, to see if there are some strategies others have found effective in similar situations. This is an all-too-common problem.
Like, this common: When I first read your question, my friends had just walked your path. They did manage to move their parent cross-country to a nearby care facility, after much pain, frustration, time -- and strategy. The strategy was to promise to keep the parent's house vs. selling it right away, preserving the parent's option to move back if the new arrangement didn't stick. It did stick, so the "hold" was brief. Phew.
In fact, after I watched this play out a few times, where an impaired relative was adamant about aging in place, then blossomed after a move to a 24-7 community care environment, I made each of my kids promise me: When I show signs of slipping, tell me the truth and find a well-managed assisted-living facility and put me there.
We all love home, oh, we do -- but we also start to trip over it, dehydrate and go hungry in its quirky kitchen, and get achingly lonely at the end of its driveway.
Elder care professionals have lists of strategies where the one example I cited came from. The entry points are accessible, too -- check the local council on aging in your mom's area or in yours, or go federal: eldercare.acl.gov.
Even if you're not able to pull off a relocation, experts have access to caregiver-specific relief and respite care options.
Readers' thoughts:
· The Alzheimer's Association has a fantastic website and a 24-7 help line. I highly recommend it!
· The best support group I've found for caregivers of people with dementia and Alzheimer's is on Facebook! The people are kind, eager to share tips and advice, and supportive when you just have to vent.
· You can't keep up doing what you're doing. It's exhausting you and taking time away from your kids. If you are the one to oversee her care, then she needs to be near you. She will become unsafe in her home soon, if she hasn't already. A little too early is better than too late.