6 Tips To Support Your Loved One’s Passions
It was year seven in my mom’s 12-year dementia journey when I finally called “Uncle” and stopped insisting I do it my way. I had arrived at the startling conclusion that I could spend the final years in constant battle with her, or I could figure out how to keep her calm and happy, and guess what?... Ultimately, it ended up being what kept me sane at the same time.
When a family member gets a diagnosis of any cognitive decline, or worse when they don’t, but it’s clear it’s happening, I think our first response is to try to over-manage their journey. And that’s the crucial point; it’s their journey, not ours. We are just the chauffeur driving their car, and they set the GPS, not us. Here’s 6 t found strengthened my relationship with my Mother in the last five years of her life.
Help your family members do what they still love doing. Taking a bath, going to the ocean, gardening, creating art. Whatever it is, put the effort into helping them continue these activities. If they love to drive a car, get them out often on car rides. A car ride may remind them of taking family trips or driving young kids to sports and after-school activities. Those are beautiful memories, so don’t rob them of reliving them. Their long-term memory usually stays intact and, in fact, sharpens as it painfully eliminates the present. It’s sometimes hard not to make their path about you. Still, I guarantee your final years with your loved one will be much richer if you’re open to doing it differently than you thought it should be.
AVOID trips to the ER. An ambulance ride is one of the most stressful events with someone with dementia. You wait in an unfamiliar area, often restrained (to keep them safe), but it’s very stressful. Sometimes, they are by themselves for hours.
Keep the house safe from potential falls and accidents. Houses should be free of clutter, unsafe rugs, and dangerous chemicals that are easily accessible. That rickety step…has to go.
Curb the complaining and irritation at your mom’s latest antic. Instead, call a sibling or relative to laugh at the latest “wacky” thing your mom or dad did. It’s certainly better than falling-to-pieces.
I once helped a son who was managing the incredibly difficult care of his dad, who had brain cancer and dementia. It was wreaking havoc on the family, as his dad lived with his wife and young kids. He was so determined to keep him home, but in the end, it was breaking him and his family and getting dangerous for his dad. His dad was getting up in the middle of the night foraging through the refrigerator, consuming raw meat and other odd things. This was not the first time I had heard of this happening. One day, he called me late at night and said, “I can’t do this anymore. This is the hardest thing I’ve ever done in my life.” He then made a joke about it all.
My sisters and I referred to this as gallows humor. He hesitated after he made the comment, waiting for me to be shocked, but then I just started laughing; he started laughing, and maybe there were even a few tears, but who can say for sure. You need to be able to talk very candidly with your family or a friend, as there is just one direction when it comes to Dementia/Alzheimer’s. It made it so much easier for my sister, who was my mom’s primary caregiver, to be able to call me up and blow off steam and then laugh a lot.
5. Take no prisoners. This is directed to all the daughters out there, for the most part. Don’t let daughters become prisoners to moms. It’s typically mom and daughters; with their tight bond, this happens, too. The guilt, anger, and abuse (yes, it happens) that I’ve seen take place because a daughter has given her entire life to this very long disease that lasts, sometimes, decades. There has to be a balance of burden. Get help, take a step back, take a vacation, and leave the care to someone else temporarily or permanently to a professional. It’s ok. Ultimately, sometimes, taking a step back is the greatest gift you can give each other. It’s also the opportunity to be a daughter again, not the caregiver.
6. Let the end happen peacefully. Sometimes, the most humane thing is not to treat. Know what your loved one would have wanted. This can’t be about you or what you would want. End-stage dementia has a pretty predictable pattern. Extending their life doesn’t always keep them comfortable or content, so focus on what your family member wants and dig deep to stay strong. I remember telling my dad when it was my Mother’s time, that we wouldn’t be doing a feeding tube. Luckily, he trusted my sisters and me to make these difficult decisions and not fight us on it, but I would have, as I knew there was no way my Mother ever wanted that. My Mother’s desire was to have a peaceful death, not a drawn-out miserable one. We can’t always direct it, so do your best to make it as calm as possible.