A Maddening Day With Charlie


Today was one of those "maddening" days with my dementia patient husband. No matter how hard I try to prevent it, it happens once a week.

You see, he still likes to take the trash out.It's always been his job and it is one of the few things he can still do.

The problem is – the recyclables. They only go out EVERY OTHER WEEK!

Charlie keeps a calendar with all of the big events in his life clearly marked, day-by-day. Somehow, he's gotten it into his head that the recyclables go out every 2nd and 4th Wednesday. In spite of every effort I've made to explain to him that every other week is not the same thing, he just doesn't get it.

I even have a card from the disposal company highlighting the weeks that they pick up recyclables. Showing that card to Charlie doesn't help. His brain just can't figure it out. So every week we have an argument about whether or not it is recyclable week.

Then, there was the little problem of a bowel accident today.

I won't go into the details on this one. But I have come to the conclusion that chocolate candies and desserts, other sweets, and gravies are trigger foods that should be avoided at all costs.

Being the stubborn and proud man that he is, Charlie refuses to wear Depends. The phrase "an ounce of prevention" means nothing to him. His brain tells him that if he isn't having a problem on a given day, he doesn't need them. He just doesn't understand that by the time he has a problem, it's too late for the Depends.

Third problem: I've been watching Charlie "swishing" his wine, coffee and juice again.He tells me he swishes to "clean my teeth." The problem with his swishing is that it is causing the enamel on his teeth to deteriorate.

The last time he went to the dentist, the dentist came out to the waiting room and asked me if Charlie was consuming a lot of acidic food. I immediately suspected the swishing and the dentist agreed with me that it was the likely culprit.

My husband knows he has to stop the ridiculous habit but his brain just can't remember!I even placed a glass of water next to his wine glass to use as his swisher—the dentist's idea. But he forgets to drink the water.

Finally, Charlie's late night proclivity: He likes to stay up until eleven or twelve o'clock watching western or war movies. I've seen them all so many times that I prefer to spend an hour or so with HGTV or the Food Network. So I go to my room and leave him with instructions to TURN OUT THE LIGHTS!

Last night I woke up at 2:00 a.m. and realized the lights were still on, and Charlie was fast asleep in bed, AGAIN. Of course, his night owl habits also mean he doesn't get up until nearly lunchtime. This has become a habit that is driving me nuts.

Caring for a dementia patient is like raising a child all over again. The trouble is, as children age they get older and wiser (at least most of them do). As the dementia patient ages, he gets more childlike, eventually regressing to infancy.

There is no stopping the regression. It will happen in spite of all the medications the medical experts come up with; it will happen in spite of everything the caregiver does to keep the patient focused and on track.

We just have to accept it and find our "stress busters" to keep us from also losing our sanity.

Marlis describes herself as a “Gramma who loves technology and has a lot to say.” She blogs about whatever catches her interest: food, books, family and more. For AgingCare.com, she writes about the issues facing the elderly and her experiences caring for her husband, Charlie, who suffers from dementia.

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Marlis.. I feel your pain my husband has Parkinson's and dementia comes with it. I have to bathe, shave, and dress him about the only thing he can do well is eat...
I am getting burned out ...I was not meant to be a parent again at my age. I am looking into getting some help in as it is wearing me down...maybe then I could run errands while they are here. Well hang in there ..hope you and your family have wonderful holidays.... Laney
My husband was diagnosed with moderate to severe dementia and Parkinsons or Lewey Bodies about a year ago. He needed help bathing, and dressing and slept about 14 hrs/day between bed and his recliner. About 4 months ago he began taking Namenda a new medication for memory. I also began giving him 2 tablespoons of Coconut Oil in his oatmeal because I read where the brains of dementia patients can absorb it as fuel better than other oils or fats. He now sleeps only 10 hrs a day, can bathe and dress himself, reads books again and can change the channels on tv. He doesn't stoop anymore when he walks and engages in conversations. His psychiatrist last week said he's never seen anyone in his condition improve like he's doing. It may be worth a try for others. We also got his sleep apnea machine working right so he sleeps better. We switched doctors about 18 months ago and the new doctors have taken him off about 6 meds he'd been taking for several years. Sometimes it pays to get a new opinion. I think the Namenda XR has made the biggest improvement. He tells me he can remember things that he'd forgotten and his mood is so much better.
Definitely maddening! I hear you loud and clear. Been there, done that, returned the t-shirt for a larger size.

But really, the story about the recycling schedule will be a very funny story to tell your grandchildren some day. You might as well laugh now. (Would it help if you went through his calendar and marked the real recycle schedule on it?)

My husband, Coy, started out with pads he could wear in his regular undies. He much preferred this to risking an accident. When it was time to move into pull ups he didn't resist. Can you appeal to Charlie's sense of dignity? "Dang! Your body sure can let you down sometimes. Not your fault! But since your body is going to be a traitor once in a while, how about outsmarting it and wearing some protection, just in case?"

Celebrate the fact that Charlie doesn't need your watchful eye on him all the time. You are soooo lucky that he can get himself to bed if he stays up later than you. That was simply not possible at any point in Coy's dementia journey. I'd gladly have put up with the lights left on if he was able to stay up by himself. If he was up, I was up. It didn't bother me if Coy wanted to/needed to sleep until noon unless there was something scheduled. Sleeping late interfered with his attending an adult day program, but I finally did the sensible thing and scheduled him to arrive later in the morning.

Dealing with dementia is maddening! No question about it. But somehow most of us don't go mad (or any madder than we were when we started). Thanks for sharing your experiences.