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It was year seven in my mom’s 12-year dementia journey when I finally called “Uncle” on insisting to 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?… In the end, it ended up being what kept me sane, at the same time.

When a family member gets a diagnosis of any type of cognitive decline, or worse when they don’t, but it’s clear it’s happening, I think our first response is 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 what I found strengthened my relationship with my Mother in the last five years of her life.

1. Help your family member 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 to do these activities. If they loved to drive a car, make sure to get them out often on car rides. It may be that a car ride reminds 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, but I guarantee your final years with your loved one will be that much more rich, if you’re open to doing it differently than what you thought it should be.
2. 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 truly an awful thing. Sometimes they are by themselves for hours on end, especially now that family isn’t allowed inside hospitals as readily as before. Keep the house safe from potential falls, and accidents from hot water spills. Houses should be free of clutter, unsafe rugs, and dangerous chemicals that are easily assessable. That rickety step…has to go.
3. 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 not only breaking him and his family, but it was 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 stared 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 someone, 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 main caregiver, to be able to call me up and blow off steam, then laugh a lot.
4. 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 to. The guilt, anger, 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, leave the care to someone else temporarily or permanently to a professional. It’s ok. In the end, sometimes taking a step back is the greatest gift you can give to each other. It’s also the opportunity to be a daughter again, and not the caregiver.
5. Let the end happen peacefully. Sometimes the most humane thing is to not treat. Know what you’re 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 keep focused on what your family member wanted, and dig deep to stay strong at the end. 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 I 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 the best you can to make it as calm as possible. Here’s to helping your family age well.