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Caregiving: Anyone else doing this alone?

Caregivers: Dementia | Last Active: 4 days ago | Replies (45)

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@debdown63

I don't want to be a "Debbie Downer," but for those of you considering CCRCs with a Lifetime Guarantee or whatever name it might have, recommend you understand very clearly what the medical coverage entails, especially if/when you or your LO needs to move into Assisted Living or Nursing Care.
My parents made the CCRC decision a number of years ago as well, though my father passed away before they actually moved. After 4.5 years in Independent Living, my mother recently had to move to an Assisted Living apartment. Dementia was a factor. The "Peace of Mind" regarding not needing family's help has proven to be unfounded, in both IL and AL, even though she lives in the top-ranked CCRC in the state. Even residents say you "MUST" have an advocate once one has to move from Independent Living (and sometimes before) - someone to track medical conditions and care, schedule appointments, coordinate transportation (especially for those in AL who can't do it themselves), attend appointments either in person or virtually, research alternative treatments or obtain second opinions if needed, provide companionship if their condition precludes their participating in group events, etc, etc, etc.
The perception that they wouldn't need family help has been a fantasy. A couple years ago, my husband and I moved from about 12 hours away so that I could be that person for my mother. Even though she lives in an "excellent" CCRC, I've had to cancel vacations and miss work-related travel. Luckily, I'm for the most part retired, though would still be working full time if I hadn't had to move, and my husband can work remotely.
In my mother's case, in hindsight, it would have been better (and probably more cost-efficient in the long run) to figure out how turn my parents' den into a ground floor bedroom with a full bath, move in with my mother, and obtain in-home care if/as needed.

On the other hand, yes, day-to-day care is okay, holidays are all celebrated with gusto, there are lots of activities for those so inclined and the environment is quite nice.

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Replies to "I don't want to be a "Debbie Downer," but for those of you considering CCRCs with..."

Welcome to Mayo Clinic Connect @debdown63 . You’ve really given all of us something to think about! I always thought that CCRCs were self-contained and you didn’t need to worry about anything. Guess it’s not so. Is there anything specific that the members can help you with?

You're so right! The person in a facility, even the very best facility, needs an advocate on the ground, especially if he or she is challenged cognitively. One other bit of advice I can offer is that if you can keep the resident looking normal (regular haircuts, clothes that match, etc.) that makes a huge difference in how the staff reacts to him or her. I know families expect the staff to take care of these things, but they are often overwhelmed with duties and may tend to skimp on less urgent things. They'll grab whatever top is handy and easy to put on the patient and whichever pants are relatively clean and nearby. The resident can end up looking worse for wear, but, in truth, if you can make it easier for the staff to keep the resident looking "normal" they'll be treated better by everyone. I know this doesn't seem to make sense, but I've seen it a million times. I've been a hair stylist in a very upscale facility for over 12 years.