The Imperfect Caregiver

NO! Two letters that exude tremendous power. It’s easy to say and has a huge impact. It soon becomes a favorite word for people in our care.

It’s time to eat. Are you hungry?

No.

It’s time for bed. You need to rest.

No.

Bath time.

No!

Food they loved yesterday they want no part of today. Bedtime becomes something to be avoided at all costs. Take a bath? At the very suggestion a temper tantrum is bound to ensue. This is how it often is for them and for us. And it’s so damn frustrating for everyone. Admit it, you get mad. You begin to think they are doing this on purpose to get back at you for some unknown reason. You want to cry and scream and throw a tantrum of your own. I did. I did all of that and it didn’t help one damn bit. And after my little tirade had ended the guilt set in. How could I behave like that? He was sick. He couldn’t help it. What was wrong with me?

The answer to that is, nothing. Nothing was wrong with me and nothing is wrong with you.

The fault can be found in this quote from the 1967 film Cool Hand Luke

“What we’ve got here is a failure to communicate.”

People with dementia often do not understand the question and don’t know what to say in response and as a result take the easy way, or in this case, the easy word, out. NO becomes automatic.

When they can’t tell us what they are thinking or feeling their behavior becomes their way of communicating. What would you do if you couldn’t tell someone you were hungry, afraid, cold, or too hot? What if they kept asking you questions in a language you could not understand?

I know I’d become angry and want nothing to do with them. I’d dig in my heels and refuse to cooperate. I’d also hope that someone somewhere would figure out what I needed or wanted.

Sitting here now, writing about it instead of living it every day, I hope to be able to help you.

Diffuse, diffuse, diffuse, is always the answer. Like everything else in dementia world it isn’t easy. It’s simply what is.

If they say no to food take it away and offer it again a half hour later. Don’t ask if they want it, put it in front of them and walk away. If they have to be fed, get them ready and start feeding them. If they refuse again walk away again. Go back a half hour later and say, “I prepared the food you asked for. Here it is.” This worked for us until it didn’t. There came a time when he stopped eating altogether. It broke my heart and it will yours too but it happens when they are preparing to go. It’s time for hospice.

The sleep problem is one of the hardest for us all. They need and want less sleep, we need more in order to care for them and ourselves. If you are alone in this you have to rest when you can. If that means the housework goes, so be it. I wish I had an answer for this. I don’t. If anyone does, please post it here.

Rodger would refuse to bathe and wear the same clothes for days at a time. He would begin to smell bad. He insisted that people in the Old Country (Italy) don’t wash as often as people in America. There was no convincing him otherwise so I stopped trying. He would take a shower and change his clothes before going to the doctor. I used that a lot. He never realized he had a lot of canceled appointments after bathing. Sneaky but effective.

When he could no longer shower by himself I would start the water running, put his shower seat in the tub, and warm some towels in the dryer and lead him into the bathroom. When he saw everything was ready he didn’t resist. This may not work for everyone but it may work for some.

I recently read that water is invisible to some people with dementia. They don’t want it on them and they don’t want to drink it. I don’t blame them. I wouldn’t want some invisible substance pelting me either. Nor would I want to put something I couldn’t see into my mouth. It’s up to us to figure out a way to help them understand what’s happening. Use a shower wand and let the warm water flow over their feet until it is okay to move up the body. Keep the spray away from their face. If modesty is a factor allow them to shower in their underwear. They will get clean, the underwear will get wet and they will take it off and put on a clean set.

When it comes to drinking, try adding a few drops of juice in the water to give it some color.

Even if you try these things and they work, the NO! won’t go away entirely and all of this may be a bust for some of you. I understand that your situation is as unique as the person in your care. If there were a magic answer we’d all use it and this blog would go away. I’d miss it but I would celebrate too.

If you have a tip, a hint, a suggestion that works for you I invite you to share it in the comment section. We need all the help we can get and we need each other. Blessed be.

Don’t let Dr. Phil say NO to the Dr. Phil Challenge. Join me in pinging on him to use his resources to establish grant funds to help caregivers who need it most. www.DrPhil.com