How to educate friends/acquaintances around the holidays?
I was looking for input from other caregivers to draft a "post" for FB that explains to friends why, as a caregiver, casual invitations/suggestions to get together oftentimes fail to materialize. (NOTE: I'm not seeking advice on how to make accepting these invitations possible - all the standard recommendations I've received so far - family, friends, church community - aren't in "our" network.) Thus, I want to create something that enlightens folks regarding all the open invitations we can't act on or have to outright decline. It's not that we aren't interested - it's simply not logistically possible. I don't want to respond to each invitation with a 'woe is me" explanation or come across as a martyr. I would simply like to create a blanket statement that factually explains caregiving is not a casual role. You can't just pick up & leave the person you care for to travel somewhere for a weekend visit. AS MUCH AS I WANT TO, this isn't an option. Mom is not a cat you can leave food out for, be sure the litter box is clean & head our for a quick getaway. Nor is it like having a dog where someone comes by a couple of times a day to let them out, feed them, etc. It's also more complicated than having a child because finding short-term care for a child seems far less complicated than finding short-term care for an elder with Alzheimer's (for me - it's been impossible). Even as a "last resort", taking mom along is not feasible. The change in environment, her mobility issues, her overall care requirements, etc. are not conducive to just bringing her along with me - logistically or socially. Has anyone ever put together something like this? If not, what reasons might you provide for/how might you explain this? Depending on feedback, I can circle back and share what the "end product" is in the event anyone else might find this useful as we roll into the holiday season...Thanks in advance, folks!
If you would welcome sensible and informed visitors, post something like: 'housebound this year, hoping our friends won't be strangers :)'
But if you just want to pull up the drawbridge, put crocodiles in the moat and grab what peace and quiet you can with your mother at home, then try "wishing everyone a very merry Christmas as mother and I celebrate quietly at home."
I really sympathise. People who haven't been through this - and I only have to think of myself talking to my cousin, long before my mother got ill - really don't have any concept of what the day to day reality of dementia and similar disabilities is like, and, as you say, of how the logistics make getting around so near impossible that it's just not worth it.
I wouldn't shy away from telling your best and closest friends what the truth of the situation is, though. One day they might be glad you warned them, for one thing; and for another the truest friends will bring you moral support and a plate of mince pies. Don't isolate yourself even more than the wretched disease does.
The first was being invited by a friend of my sister the first holiday season after her death, when my father had already been in long term care hospitals for 4 months and was currently hemorrhaging at the hospital he was in then. He wasn't even able to stay awake long enough to understand I had visited him.
I recall that was the night that I was so physically and mentally fatigued I wasn't sure I could make it back to my car, and just kept telling myself to move one foot, rest, then move the other foot. That was probably one of the times I slept 14 hours straight once I got home.
I told this friend that I just wasn't up to getting together with all her family (none of whom I knew) and trying to be cheery when I was so worried and so exhausted. When I tried to call her later after Dad had stabilized to ask about her holidays, she ignored my calls. And she never called again.
The second was when an acquaintance invited both of us for holiday get-togethers with her friends. I knew her only through membership in a book club. She was a casual, but not a close friend.
She had a friend who would be bringing her elderly mother. She said they "parked" the mother in front of the fire and then went on to their planned activities.
I never went; I couldn't envision my father being treated like a potted plant, wrapped up in a blanket sitting next to an elderly woman he didn't know while the rest of us engaged in social activities.
Synopsis: some people just aren't going to understand why caregivers don't feel comfortable leaving elders at home or bringing them to holiday functions.
I have a similar concern about driving, for different reasons. First, it's winter and if there are any car problems or breakdowns, I'm stranded until AAA sends road service, and I have an older parent who needs to keep warm. Even though I have several blankets and back-up gear in the car, if a breakdown prevented even starting the car, we'd both be uncomfortable.
Second, it isn't as easy for either of us to travel. I would be taking the portable oxygen concentrator, extra cannulas, and back-up batteries, which together would last about 8 hours. I do have a car charger for the batteries, but if the car were to break down and I couldn't start it, we'd be reliant on the portables, which also aren't supposed to be operated below certain temperatures.
Plus, I have back problems now and need to get out and stretch frequently.
Third, I just don't have any desire to drive in winter any more than I have to, and driving for a few hours to meet friends or family no longer has any interest for me.
Fourth, if there were any kind of accident and we had to get out of the car, maneuvering the rollater, concentrator and batteries out, plus my father and me, would take about 5 minutes. And we'd have no place to keep warm until police vehicles arrived. Just too chancy, especially with all the reckless drivers on the roads.
Sharing my favorite phrase:
"We've made other plans, but thanks for thinking of us."