When Grandma Mollie finally decided to get home-care, she found a caregiver in her community to assist her with certain tasks. In a few weeks, she fired the caregiver, after accusing her of misplacing and then stealing her eyeglasses. She found someone new. The next caregiver made Grandma Mollie uncomfortable because she drove too fast and she refused to follow Grandma's driving directions. She too, was fired, and the next person after that. On and on went this cycle, until her daughter and son-in-law, (my aunt and uncle) stepped in and graciously offered to bring Grandma Mollie to live with them, until they could figure out a long-term plan. Grandma Mollie, much to everyone's surprise, accepted their offer.
Aunt Joyce and Uncle Danny had infinite patience with Grandma Mollie as she battled with the paranoia of early to moderate stage dementia, and a defensiveness indicative of her struggle to maintain independence. Sometimes Grandma Mollie's behavior was erratic and unpredictable. At times she was her critical artist self, finding fault in the way Joyce and Danny hung her paintings in their home, or how the table was set for dinner. During moments when she was present and appreciative, Grandma Mollie showed her warm and loving self, and heaped praise on Joyce and Danny as she truly felt deeply grateful for their efforts. Most difficult for Grandma Mollie was her loathing self; indeed, she loathed how needy and confused she had become. Eventually, after a discussion of her finances, Grandma Mollie decided it would be best for her to move to an Assisted Living Facility close-by. She stated clearly that she wanted to keep her "sense of dignity," by having her most intimate needs met by someone outside of the family.
Grandma Mollie's decision to live with her daughter and son-in-law, even temporarily, deeply moved me. The heartfelt welcome offered by Aunt Joyce and Uncle Danny was in no way a simple decision for them, despite the fact that they had long discussed the possibility of participating in Grandma Mollie's care, and had also talked to Grandma Mollie about when the time would be right for them to step in. Indeed, only after a broken hip and decreased mobility, experimenting with in-home care, and mounting frustration, was Grandma Mollie able to decide to leave her own home.
The word "caregiving" is intensely evocative, and identifying a loved one's need for care can be emotionally stirring. The mere discussion evokes poignant memories of loved ones in whose care we were involved, or associations with caregiving situations of which we either approve or disapprove. We may have watched someone fall and pick themselves up, stubbornly refusing to either ask for or accept our help, and feel an increasing sense of defeat at our inability to give our loved ones the help they need.
In my role as geriatric care manager, I am often contacted after loved ones watch an older adult struggle and reject their offer of help. Concerned clients ask "how do I get my loved one to accept the kind of care I think is good for her, or any care whatsoever?" This very question in most cases, is misconstrued. Regardless of how compromised you feel your loved one might be, and no matter how much of a challenge their stubbornness might pose, you must be patient. Your job is to initiate and then revisit a conversation about care. The conversation should begin with the type of care they think is best for them, while offering your opinion in a way they can hear. You can then, through discussion, and with patience, strive for a resolution all will embrace.
One caveat: If you have cause for concern about a loved one in a life threatening situation, posing an imminent danger to themselves or others, clearly a medical professional should be notified immediately, to recommend emergency care.
By no means should your loved one be in the position of having care foisted upon them, as long as they are able to make an independent decison. Indeed. long after we may question a loved one's judgement, it may well be possible for that person to make a viable decision for care, on their own terms. It behooves us to respect an older adult's lifetime of experience, self determination, dignity and expectations for the next phase of their life. It's our job to think about making decisions for care with them, and if needed, support them to enact their plan.
This post is Part Two in a series on Caregiving for Older Adults.
To read Part One, Mushroom Barley Soup and Other Red Flags, click here: http://http://www.huffingtonpost.com/stacey-gordon/assisted-living_b_2241677.html
Part Three: A Checklist for Caregiving in the Home, will be posted mid-January, 2013.