What does a caregiver for someone with dementia do?

Factual Questions
1

A thread about lost friends got me looking up a girl who was very dear to me through high school and some years after. She was very smart, musical, and made incredibly intricate pen and ink drawings and did calligraphy professionally. As I learned later she is bipolar and alcoholism set in hard after HS with cycles of recovery and relapse.

I googled her as I had a couple times in the past and it turned up a story from last year when she went missing and was found wandering in a nearby town that she used to live in. The story mentioned that she was bipolar with early onset dementia. It said her caregiver reported her missing and that she didn’t have her medication.

So what does a caregiver do for a person with early onset dementia who is otherwise able-bodied (she’s 52 now)? Would it be some sort of live-in situation or they do shifts or they drop by to check up on her? How would a caregiver keep her from wandering off? I can’t imagine what her life is like now.

2

The caregiver does whatever is needed, which will vary from patient to patient.

My mother is in a nursing home, in the Alzheimer’s section. The patients are allowed and even encouraged to wander outside of their rooms, but the entrances have a keypad with a code on it, and apparently that’s enough to keep them from wandering out of the building.

In a private home, the caregiver usually makes sure that the patient takes the prescribed medicine, eats properly, does basic hygiene help, and keeps the patient from burning the house down. Before my parents went into the nursing home (my father had to have a leg amputated, and couldn’t care for her any more), my dad was constantly on the lookout for my mother turning on the stove or oven because she wanted to cook something, and he had to make sure she didn’t do other dangerous things. It’s basically like looking after a toddler, who is adult sized but who has a toddler’s impulses and lack of sense of danger.

3

Wow, I came in because elder care is what I do for a living, but Lynn Bodoni summed it all up very precisely.

The only thing I might possibly add is that oftentimes one is tasked with those small household chores that the subject can no longer do for themselves; i.e., laundry, washing dishes, vacuuming, perhaps opening mail, looking after a pet, stuff like that.

4

A recent trend in memory-impaired housing is to limit patients to one floor and make the floorplan a ring - so they can never really get lost, they just keep going until they get to their door again (which they recognize by a family photo or similar icon). I understand it’s improved conditions for both patients and staff immensely; the affected spend far less time upset and needing guidance and comfort. So they go the wrong way to the bathroom, dining hall or day room; doesn’t matter, because they get there anyway, without any need to remember or learn new things.

5

Not early onset, but . . .

My father was diagnosed at the age of 75, and my mother decided to take care of him single-handedly (my brother and I both lived in other cities). At the time (late 1980s-early 1990s) there weren’t as many outside resources as there are today. He had never been an easy man to live with, due to an explosive and unpredictable temper, but as far as I know he was never violent with her, only with us kids.

My mother’s first priority was to keep him from harming himself. Keeping the doors locked, hiding the keys, hiding kitchen knives, medications, etc., blocking the stove knobs. She also did things with him to keep him mentally active . . . talking about current events, playing games and puzzles, reading to him, singing songs, etc. She also involved him in artistic creativity (they were both artists). As the disease progressed, many of these activities became beyond his capabilities, and the possible dangers became more and more serious.

Then, gradually, he began becoming violent, like a child having tantrums. Throwing things, hitting her, even harming himself. And he needed assistance doing everyday things, like going to the bathroom. It was at this point when I started encouraging her to put him in a nursing home, but she refused. She believed that a nursing home was like a death sentence, and she insisted on caring for him as long as possible. It was at this point that I decided to relocate back here to help her deal with him.

Long story short, it wasn’t long before the nursing home became imperative, and as predicted, he didn’t last long. He lived to be 81.

The experience took a huge toll on my mother, both physically and emotionally. She became the one to look after, until her death ten years later.

Today, patients and their caregivers have many more options available, but it’s still a heartbreaking ordeal for everyone involved.

I’m 68 now, and scared.

6

One day at a time, my friend, one day at a time. :slight_smile:

7

Most days I forget to be scared.