Sooooo... I am being re-reminded out a lot of people think of themselves as "experts" about other people's health issues. I was just told the other day from an acquaintance about how our aging family member was "just like" her grandfather who had only two years left to live (this was after I opened up to her about our concerns about our family—keep in mind I really didn't give her details). Then she told me we should move our aging family members in with us and care for them both (FIL has hallucinations and memory problems and does not want to even leave his home—and we have a small child so no....). I am trying to keep in mind she meant well and was trying to be helpful, but when people say these kind of things (no matter how good their intentions are) I am reminded why older family members can have strong justification for keeping their declining health a secret.
Not so much now - that he is 24 and I have payed "companions" who take him out five days a week - but when he was younger I took him with me everywhere I went.
Although my son is always very well behaved when out in the community- it is pretty obvious that he is disabled and exhibits some of the more well know autistic ticks. People always felt free to approach me and tell me their experiences with autism and/or "tips" on what and how I should be doing in raising, socializing, behavior etc.
But my favorite would be the people who would ask me what he could "do". Meaning - what was his extraordinary skill or talent. The assumption that all individuals with autism were also savants.
Yep - lots of reminding myself that people were just trying to be helpful and encouraging. Grrr!
I hear you. It is very hard to be graceful with certain people and their so called helpful comments, when sometimes I all I want to do is scream. I find this especially so since my dad's passing. A colleague told me to go on vacation and I would feel better! My father has died, I don't think a vacation is going to cut it. But no, most times I just keep silent and just try to avoid these people.
The "why haven't you done....a, b, c, through z" questions really irk me. These people know nothing about caregiving, but think they know everything, yet when specific issues are discussed, they're clueless.
I try to remind myself that I haven't always been the most graceful support person—especially when I was about 15-20 years younger and had been blessed not to experience very much illness or aging in my family as my parents had us when they were young (and their parents had been young as well), and we had moved away from our extended family to boot.
I gently asked her what her grandfather had and pointed out that there are 40 types of dementia and told that there was a good chance our family member had something different than her granddad. I did not get into telling her that Alzheimers—which is what her granddad had—can progress very differently from person-to-person (I was tired and trying to be polite). Then she tried to cheer me up by saying that other forms of dementia didn't decline, and I gently told her that wasn't always the case and changed the conversation. We were at a kid's event and my husband was gone for the weekend and I was so tired...
But who knows? Maybe someday she'll be thankful if she undergoes it with another family member she's close to or knows someone closer than me who is touched by it.
I was tired and a bit annoyed, but I don't hold it against her. She's really a sweet woman, and dementia is a very misunderstood topic—especially given it can be so different or each person and many families try to shield their children and grandchildren from it (even when they are all adults).
Perhaps this woman said what she said because she wished her grandfather had moved in with her parents or she had spent more time with her grandfather before his death.
Maybe she didn't want you to have any regrets in whatever is your care plan for your aging loved one.
I can't stand it when people give me unsolicited advice and whenever they do, I leave the conversation more empowered in my decision (to care for my mother in my home). Interestingly, whenever I have moments of "I can't do this anymore...When will she die so I can get on with my life...?!", I always receive an unsolicited comment from a random stranger and then I relax, knowing it's all going to be okay and I'm just having another bad day. I like to think these unsolicited comments are spiritual messages of support coming from my deceased father who I miss very, very much. He's letting me know he's always with me. :-)