I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes.
Sally Okun, in response to “Hacking home health care” (2014)
Just the other day I was getting the second pedicure of my life (although I may need to do that again soon) and the manicurist asked what I do. My usual response is that for many years I was a community-based palliative care nurse and now I work for PatientsLikeMe. Usually that all takes a bit of explanation but Denise totally got it – why, because she’s been a family caregiver. First for her mother in 2003 and more recently for her father-in-law. Both at the end of their lives with dementia.
She talked about how much she learned from the first experience and how that helped her in caring for her father-in-law. She talked about the modifications she made to his pants using Velcro and creative use of scissor cuts to the underwear so he didn’t have to fuss with the button and zipper to make it to the bathroom in time – but to make it look ‘right’ she even sewed the button back on. The alternative of getting him sweat pants – which everyone told her to do – just wasn’t acceptable for a man who would never have worn sweat pants when he was able to make his own decisions. She then said something delightful and it stuck with me all day, “I just MacGyvered it!”
Denise reminded me of so many family caregivers I’ve met over the years who were MacGyver masters of creativity and problem solving with simple everyday ingredients and I had a very similar thought – we need to catalog these, we need an app for that!
So I’ll offer a dated alternative title for this post “MacGyvering home health care”!
Note: The featured image is a detail from a painting about PatientsLikeMe by Regina Holliday.
What a wonderful narrative with a reminder of 2 key lessons for caring for those with dementia, as I also learned, 1) While some abilities seem to have been lost or forgotten in dementia, the instincts and sensibilities remain. Being respectful of these, (by even sowing back the button on!) really goes a long way in providing patient centered care…caring in the way that maximizes the person’s independence and most of all self esteem.
I remember when I would cook an amazing meal, we would all join in congratulating my mother in law (who has early Alzheimer’s Disease) on the great meal she made for us. The happiness and self assurance in her demeanor was enough therapy to help her muster her cognitive reserve.
2) For care giving strategies to have impact, we need to balance what we may consider as impact with the quality of life issues that may worsen dementia. For instance, my mother in law developed severe stranger anxiety such that she would weep bitterly if she would be left with a home care nurse. While she got her meds and her meals, she was miserable. Her dementia contributed to her anxiety which worsened her dementia. We resorted to greeting the home health nurse as an old friend every morning to help her adjust, and while she soon caught on to our act, it also meant she was remembering more!