My sister is staying at the patients (Pat's) house and is the primary caregiver until I get up North this weekend. I talked to her last night and she is exhausted. The situation is worse than we ever imagined. You don't really realize how people live until you live with them. The amount of care that a demented adult requires is more than most people would sign up for. In addition to the physical needs that must be cared for, there are the mental issues that make Pat angry, defensive, accusatory, scared and frightened. One of the most troubling problems is the Sundowners Syndrome which make Pat feel unsafe after the sun goes down. The shadows from lights, the lack of sunshine and light and the slow down of activity lead to anxiety, paranoia and frustration. It is draining for the caregiver.
When I offered to help care for Pat, I certainly didn't know I signed up for this. Sis says its a lot of work. There are so many things we take for granted we do every day that Pat can not do anymore without assistance. Did you get out of bed this morning and go pee? Pat can't. Did you take a shower and wash your hair? Pat can't. Did you walk to the kitchen and get a cup or glass and pour your beverage? Pat can't. Did you prepare a nice warm breakfast by measuring food, dispensing and heating it up? Then carrying it to the table to eat? Pat can't. And the day goes on like this where the caregiver must take care of their own needs and those of Pat. In addition, there is the confusion and the resistance to change. Hoarding is a problem and those old magazines, catalogs and piles of mail have to be slyly cleaned up and tossed out. There will have to be a lot of negotiation to get cooperation in trying to clean up the home and remove clutter.
I threw a few extra things in my suitcase that I just might need when I'm there - sanitation masks, hygienic gloves, hand sanitizer and I need to find some Vick's or some product you rub under your nose to block bad smells. This is not my forte. I would never claim to be much of caregiver, ask DH. I expect people to be self sufficient and suck it up and be strong to get through whatever ails them. It's probably why I never minded not having children that required constant care. But I think kids would be ten times easier than caring for a confused adult. At least kids are small and you can lift them and move them around, and generally they are happy and enthusiastic. I think after this little stint of care giving, I'm going to have a lot more respect for those who are caregivers to family members. It will be an enlightening experience, though I'm sure not that enjoyable.
If any of you have suggestions from your experiences, I'm all ears.