We recently participated in a seminar for experienced caregivers who talked for
more than two hours about what worked and what didn't. After condensing our
voluminous notes we distilled their experiences into three core "keys to sane
and successful caregiving" that go like this:
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Start the way you plan to continue:
As Andrea, caregiver to her mother for six years put it, "When I first
started helping my mother out I bent over backwards to do everything when and
how she wanted it. Of course, that meant that I was the 'chosen one' to do
everything. When I finally figured out that I needed more help, Mother did
everything in her power to make sure that nothing else but 'me' would work. She
refused to cooperate with everything and everyone. One day I just lost it. We
were driving home from another time-sucking errand and on impulse I drove into a
nursing home lot. I got her wheelchair out of the trunk and told her to get in.
She got big-eyed and asked 'why?' I looked her in the eye and said, 'Since you
won't accept any help at home, you'll have to move. This looks like a good place
to start.'
"We didn't go inside, but that was the day she started cooperating a little
more. It's still not great, and she relapses a lot, but she's better."
When Jacquie told us her hospital discharge story, everyone sat in awed
silence. Dad was hospitalized with a long list of illnesses, the worst of which
would make it impossible for him to ever live alone again. After some weeks of
non-productive rehabilitation the nursing home informed Jacquie that she would
have to take him home. Not knowing any better, Jacquie did so. Three times a day
Jacquie drove 30 minutes each way to visit her Dad, give him his medication and
clean him up. Within a month he was again hospitalized, and this time the
hospital discharge planner did the same thing. Home went Dad to his lonely
house, with a little home health help and Jacquie.
Jacquie said, "I'm one of those people who doesn't like confrontation. When
they said I had to do this, I just assumed they were right. When it happened
again for the third time, I couldn't help myself and I just burst into tears
right there in the emergency room. That's when I found out that there is help
for someone like me. You just can't let someone who can't make good decisions be
in charge. That was the hardest thing for me. He's my father, but I can't keep
on being the 'good girl.' He's really, really mad at me right now, but he's in a
nursing home and his legs are finally getting a little bit better."
Whether it be who cleans the floor and does the washing or the bigger things
such as whether a parent should live with you, start as you hope to finish. If
you know that you can't provide what's needed, insist on support services or a
workable alternative. If you know that living with a parent would be short-term
at best, avoid moving in together.
Undoing will be much more difficult than doing. If your parent is incapable
and you know you can't be available long-term, get help from day one. If your
parent is fully capable of doing something, even if slowly, don't take over. The
more you do, the more dependent your parent will become. Keep your focus on
maintaining your parent's independence as long as possible.
A routine is your best friend:
"It took us a few months, but we do most things at the same time every day
now." said Lauren. "That make it easier for my mother-in-law, who lives with us,
and for me. I get the kids up and out to school before she comes in for
breakfast. We try to always schedule routine doctor visits on the same day of
the week. I keep a list and only shop once a week - if we run out of something
in between it's mostly 'too bad' for everyone. She takes a nap or a rest every
afternoon (my time!). I even schedule laundry day now...hers on one day, ours on
another.
"I learned to do this while she was still living alone. My life was chaos of
running back and forth until I gave her a calendar with my 'Mom time' clearly
laid out. It took a while of saying, 'I can't today, but I have time tomorrow'
before she finally got the idea that she would have to wait until I had the time
to do what she needed.
"Of course, those little emergencies can mess up your plans, but you do
eventually learn what's a real emergency and what isn't (mostly)."
For a parent with even the mildest dementia, a daily routine is especially
important. An established routine "sticks" and is usually quite comforting to
someone who is easily confused. That's why the best residential facilities for
people with dementia will have a routine that never varies from day to day.
Keep a record and write it down:
Almost everyone agreed that our memories are fickle, indeed, and that a
written record will be a life- and sanity-saver. Whether you choose a pretty
journal or your kids' leftover spiral notebooks from last year, use whatever
works. Just jot a little note at the end of every day and you'll have a good
record to refer back to. It's surprising how even things that were monumental at
the time can blur in your memory when you're busy. Just make a quick note about
things that work, things that didn't work, and especially quick notes about
symptoms and behavior. It will come in very handy the next time a medical
professional has questions. It will also keep you from second-guessing yourself
or minimizing how significant something really was when you look back.
When we did our best to sum up the gist of everyone's comments, it seemed to
come down to basic organization and planning. As one woman with four grown
children put it, "I had to have a system for managing the kids, and now that
they're up and out, I have to be even more organized to take care of just one
elderly person. With the kids, they would take the one time I slipped and they
would try to make it a habit. My mother is the same way, so I have to watch that
I don't give in just because it might be easier that particular day. Blow the
routine just one time and the system it took you six months to get working, will
take you another six months to get working again."