Tips for Caring for Parent with Dementia

If you give Mom a cookie … She’ll want another one to go with it. Some days, that’s her idea of a balanced diet: one cookie in each hand.

Not always, though. Most days she’s pretty careful to eat and drink like someone with a history of diabetes. But some days, dementia wins and the child in her comes out to play.

I’ve decided that caregiving for someone with dementia is a lot like parenting a toddler. Some differences, of course … I would always want to treat her like the adult she is, and give her as much say in the details of her life as possible (clothing and drink options, etc.) But this is a marathon, not a sprint: To some degree, it’s important to manage the chaos. Especially since I have two chaos-generating teenagers as well as a husband to think of. And the dogs. Oh, Lord, the dogs.

Some of the same lessons I learned (a bit too late, in some cases) while raising Chris and Sarah have come in handy for taking care of mom:

• Enjoy the moment. When they were little, I would attempt to work when they were on the floor playing. In retrospect, life would have been much sweeter if I had joined the fun more often, instead of powering through. Now, with Mom, I move at a slower pace — but, thanks to the kids, I’ve learned to stop fuming and to reset my internal clock. I may not get as much done — but I’m enjoying it more.
• Think twice, act once. Thinking through the steps of a task while changing, bathing, or transporting her saves wear and tear on the body from lifting her or getting myself on the floor (or up again). Gathering everything ahead of time – lotion, clothes, socks and shoes, wipes and bags, etc. – and putting them in arm’s reach can save a lot of wear and tear on both of us.
• Go-Bag at the ready. When the kids were little, I’d never go anywhere without an emergency bag (diapers and wipes, sunscreen, change of clothes, snack and juice box, activities, emergency Diet Coke and clean shirt for me). Add a few tabs of Ammodium and an emergency set of morning meds, it comes in handy now, too.
• Morning and evening routines make for a better day. When the kids were little, doing the same things in the same order in the morning and again at night was our best shot at a good night’s sleep. Now they are MOM’s best chance. Change into nighty, warm socks, tuck in with a kiss, soft music while I read to her, lights out. After about 10 minutes, gentle snores come over the monitor. All is well. The next morning, turn on a gentle light and a five-minute warning before getting her up helps her to be relatively alert and steady on her feet.
• Soothing music and baby monitors. As a new parent, I discovered that the monitor was as much about my peace of mind as their safety – which holds true for the elderly, too. When she seems especially agitated, my piano music or a few Gospel favorites can soon get her humming along.
• Encourage independence as much as possible. At bathtime, a sitting bench and detachable and/or adjustable showerhead allows her to do much of her own personal care and preserves her modesty. I’ve also learned to give ample time for her to attempt to dress and undress herself. Just as when they were little, it would be much simpler and faster for me to do it for her … but faster is not always better.
• Anticipate changes. Ten years ago, Mom could whip up a double batch of cookies faster than you could say “oatmeal chip with walnuts.” Now I do the mixing and oven work, and she scoops the dough onto the trays. Once I made the mistake of leaving her with my teenage daughter to finish the last few pans … and Mom burned herself badly. I would never have left a toddler alone near the stove. This incident taught me the hard way that I can’t leave her, either.
• Bribes can be your friend. As every experienced parent knows, the occasional bribe is a useful tool in the parental tool belt. The same is true for caregiving. Mom will do almost anything for sweet potato pie. I have four of them in the freezer, just in case I need to hack off a slice to make the pills go down.
• Beware diaper butt syndrome. It’s hard to take advice from someone whose butt you once diapered. Even with dementia, parents sometimes need to hear the tough messages from others (doctors, pastor, hired caregiver, friends) in order to let it really sink in. When Mom refused to take her meds because of her auditory hallucinations, I made an appointment with her doctor, who wrote a letter I could post on the refrigerator that reads: “Sandy, as your doctor I’m telling you to listen to your daughter. She is in charge. Take all your meds every day. Drink lots of water. Keep eating to keep up your meds. If you do these things, you will stay as healthy as possible, as long as possible.” From that moment, she has not missed a pill.

What tips would you add to the list?