We are all caregivers whether our loved one lives in their own home, in our home, or in a facility. Whether we live down the hall from them, across town, or across the country, our role as their caregiver and advocate remains crucial.
Lots of times family members think “I’m not really a caregiver because my mom/dad/spouse/partner doesn’t live with me.” Have you ever thought that? I did, when I moved my mother, Judy, from my home into assisted living back in 2005. Feeling so much guilt about my decision, I thought, “Real caregivers take care of their loved ones 24/7 in their own home.” I also assumed that with Mom in assisted living, we could return to our independent lives, back to our old relationship of just mother and daughter, and that I wouldn’t have to do very much.
I was so wrong. My job as caregiver not only continued over the next 8 years Mom lived in dementia care facilities, but intensified in many ways. Your role, too, remains essential if your loved one moves out of their home or your home into a facility.
First, Let Go of the Guilt
We need to let go of that guilt—which almost everyone feels when their loved one is in a facility—and concentrate on how we can advocate for our loved ones. Often, the care they receive in a good facility is equal or better than what we can provide at home when we are overloaded, losing sleep, and risking ill health ourselves. So, let go of the guilt, and look for ways to improve your loved one’s quality of life wherever they are living. Instead of promising our loved ones that we will never place them in a facility, promise them that you will make sure that they will always receive the best care possible as their needs change.
Ways to Advocate for Your Loved One in a Facility (Part I):
- To find a good facility, take some tours, but also try to visit unannounced to observe. If a place has an unpleasant odor, that is always a bad sign; a facility that runs smoothly will look and smell clean. If you are looking for a nursing home, you can use the Medicare.gov website to compare facility ratings for staffing ratios and other measurements of quality care.
- Look for a facility that believes in “person-centered care,” that treats individuals as unique people, not patients. Any facility that you consider should have an ambiance of human warmth, with staff members smiling, talking to residents, and offering hugs, for example. Don’t be fooled by a facility that looks like a plush, top-tier hotel; what’s most important is not the carpeting and furniture but your loved one’s quality of life as they interact with everyone from the aides to the administration. (If you are fortunate enough to live near a nursing home on the Eden Alternative registry or a Green House Project nursing home, I would recommend getting your loved one on their waiting lists, because they offer top-notch person-centered care even for people who run out of savings and have to go on Medicaid (as my mother did).)
- If your loved one has dementia, look for a facility that offers dementia-specific care (continence care, for example, and dementia-related activities) plus training in dementia care for the staff. (Laws requiring dementia care training for facility staff vary by state and type of facility.)
- When you take a tour of the facility, ask them to clarify their guidelines about when your loved one will have to move out (for example, if they become incontinent, need to be spoon-fed, or can no longer take a step to transfer from a wheelchair to bed). Look for clear communication and expectations. (If you are considering assisted living, here are some more questions you can ask them.)
- Once your loved one is moved in, if you live within driving distance, visit at odd times. It’s sad but true that a resident who has family visiting a lot may receive better care than a resident who never has visitors. (This is another reason to find a facility near you, even if it means moving your loved one from their state to yours.)
Next Tuesday I will post Part II: More Ways to Advocate for Your Loved One in a Facility.
In the meantime, if you care for a family member or friend living in a facility, what would you recommend to a new caregiver? Have you found certain things to be especially useful as you advocate for your loved one?