A Day in the Life

Dear Mom,

As the primary caregiver of a severely needy Alzheimer's patient, the tendency is to focus on the negative aspects of the situation. Make no mistake, though, there's a real upside to balance the downside(s). Mom is no longer able to get up and move around, which has resulted in a much lower likelihood of being injured in a fall. This was a huge consideration in the past, as Alzheimer's patients are notoriously anxious and tend to relieve anxiety by moving, anywhere, everywhere, out the door and down the street. I have a friend who is sure she didn't sleep for more than 30 minutes...for 3 years. I cared for her husband 2 afternoons a week so she could leave the house. There were times she was sure she was becoming psychotic from lack of sleep.

Mom also doesn't indulge in as many self-destructive compulsive habits as she used to. Removing her oxygen cannula (nose-hose thingie) and picking holes in her skin when she gets bored has slowed down quite a bit. She doesn't walk anymore, her advanced condition has pretty much fried her wiring so we move her in the wheelchair, though she's able to stand up and hold onto the walker when moved from the bed to potty to wheelchair. We get her up in the morning, potty, medicate, breathing treatment and feed. Twice a week the Hospice nurse comes to check her out and three times a week she gets a bath by the Hospice Aide. Baths are time-consuming and physically demanding, this has been a real blessing. Then we sit her in the recliner until lunch, wake her up to take her to the kitchen to feed her, then back to the recliner until dinner. By then she's waking up and starting to get antsy, it's called "sundowning" in the caregiving world, characterized by increased agitation and confusion, etc.. It used to be the time she really had to be watched, she would pace until she became exhausted, disoriented and ran the real risk of falling. Now she hallucinates and talks to dead relatives, long-grown children and the TV. After dinner it's back to the recliner for the evening. Meds-including a mild sedative-and breathing treatment at about midnight, then to bed until the next morning. She's not able to get out of bed by herself anymore. We've been encouraged to sedate her all the time but have resisted so far. When she's sedated she's disoriented beyond what's necessary and her legs don't work at all. There will come a time when she's bed-bound and that will be another set of problems to deal with, until then there are decided advantages to keeping her vertical.

She's still interactive, though that's rather a subjective term. When I wake her up in the morning, she responds appropriately "Good morning, dear", says thank you for anything that's done for her, whether she likes it or understands it or not. Conversation is mostly incoherant babble, but we pretend we understand what she's saying, mostly she's aware that her speech is nonsense and she gets embarrassed. She's not combative or abusive, the worst way she'll chide you for something she hates is a terse, "Thank You!" to which I tersely reply, "You're Welcome!". As I hope I've made clear, it's far less than a living hell.

Most days, one of us works while the other stays home to do the mom-duty. Some days are downright peaceful, for which I'm thankful. Some days are an endless battle to keep her from harming herself, interspersed with too much to do, and lots of laundry. There are several hours at a time when she sleeps and I can study or write or play on the computer. I've had 3 days off in a row and have really enjoyed them. The weather has been cold and yucky so there's nothing to do outside, I have a tolerant and patient husband so I don't have to cook or clean unless I want to, we're equal partners in this deal so we each are capable of doing any of the above duties and chores.

We're very lucky in that we're both "stay-at-homes", preferring our own company to most anyone else's. Our friends like to come and see us and hopefully don't mind that we don't get out to see them. It's kind of like having all of the advantages of being hermits with options...

So that's it-a day in the life of full-time caregivers, at least our version.

I love you,

Lisa