My wife's Alzheimer's has gotten progressively more difficult to deal with, what should I do?

1 answer | Last updated: Sep 23, 2016
Harbinger2u asked...

My wife was diagnosed with alzheimer's in 2008. Things have manageable up to August 2011.

Current behavior issues:

  1. Becoming difficult for her to swallow solid food.
  2. Constantly changing underwear. I wash 64 pair every 3 days.
  3. Constantly applying Germ-x,A&D, Aloe, toothpaste to her under arms.(20 to 30 times a day).
  4. I have a "bedside" toilet next to the sofa. She will get off of the sofa, say "OH MY GOD", then place her hand in her underwear and defecates in her hand.
  5. Ask me "what do you want me to do?" over and over during her waking hours.
  6. Communication has become very difficult. She keeps saying "I don't have anything". If I ask her what she wants she replies "nothing"???????

Expert Answers

Jytte Lokvig, PhD, coaches families and professional caregivers and designs life-enrichment programs and activities for patients with Alzheimer's disease and related dementia. Her workshops and seminars help caregivers and families create a healthy environment based on dignity and humor. She is the author of Alzheimer's A to Z: A Quick-Reference Guide.

You have your hands full! Most of these behaviors are actually not that unusual for people in the mid-to-later stage of Alzheimer's. Fortunately, with a few changes your life and hers will improve greatly.

The one issue that raises immediate concern is your wife's difficulty with solid foods. She may no longer be chewing thoroughly or her body may have forgotten how to swallow; either way, she's at considerable risk of choking. You need to change how you prepare her food. The good news is that you don't have to cook her special meals. You can serve her whatever you're eating, but run it through a blender or a food processor first, so she won't have to chew at all (it's called a "mechanical diet.") Of course, you'll want to make sure that her diet (as well as yours) is well-balanced.

Your other problems are also due to changes brought on by her disease. It's pretty common for people with Alzheimer's to lose awareness of their bodily needs. They may no longer feel hungry or full, nor are they aware of the subtle signals from their bodies that they'll soon need to empty their bladders or that a bowel movement is imminent until it's too late for them to reach the bathroom.

From what you tell us, having the portable potty in your living room is not helping you much, so you might as well move it back to the bedroom and use a different tactic. Rather than waiting for her to tell you, a few minutes before you sense that she's about to have a bowel movement, take her to the bathroom and keep her company until she has finished. Of course, this only works if she's very regular. If she's not regular or you have a hard time "reading her body-language" you can switch to pull-up "adult diapers" "“ don't use that term with your wife, though; it's demeaning to a lot of adults; instead call them "briefs" or simply "underwear." You'll still encourage her to use the toilet as long as she can.

You don't tell us if your wife changes her underwear constantly because she has wet her panties or she simply likes to change her clothes? If she simply loves to change her clothes you may be able to satisfy that desire by having scarves and hats for her to use. If she doesn't already have any in her wardrobe, check local thrift stores and also any women friends of yours.

When it comes to her obsession with panties and toiletries, you can eliminate the worst of the problem by putting locks on your closets. In any event, I recommend that you switch to pull-up sanitary briefs instead of her regular underwear. Because she has gotten used to reaching into her panties, you may also want to get her some jumpsuits that zip up the back and make it impossible for her to do so "“ or to undress by herself. Go to a search engine and look for "adaptive clothing."

The simplest way to handle her fascination with assorted lotions is to make them inaccessible to her by locking them up as you did with her panties. You might keep a bottle of lotion within reach and show her how to use it on her arms and hands "“ and on yours as well. It may feel good to her to do something for you for a change. As soon as she tries to rub it into her armpit, offer her a "fiddle-box" as you discreetly remove the lotion.

There are several things you can do to ease her restlessness. Keep a couple of "fiddle-boxes" handy. When she asks you what do to, hand her a "fiddle-box" and ask her to help you clean it up.

A "fiddle-box" is a container (shoebox size works well) with an assortment of stuff that can be sorted, counted or just admired or discussed. You can use any smaller items that look interesting as long as they don't represent a choking hazard. When you show her a fiddle-box, pretend you just found it and ask her to help you clean it up. You can use these boxes whenever she's restless or needs a distraction. When she says, "she doesn't have anything," offer her a box to keep. You can retrieve it a short while later when she's forgotten the episode.

Lastly: You must take care of yourself. Find a local support-group (through the Alzheimer's Association) for Alzheimer's caregivers and find some way to give yourself some respite time. If your community does not offer adult daycare, hopefully you have friends or family members who can stay with your wife for a couple of hours a week (at the very least) while you reconnect with the outside world. "“ Go to my website for tips on communication: www.alzatoz.com