Corcaigh,
My immediate family (Dondra, my son Jason and my daughter in law Susan are the ones who are most important to me and they know to be patient when I freak out, get confused as to the day, what meds I’m supposed to take when and doctor’s appointments.
My extended family (brother, sister in law, niece and nephew) don’t wanna know about it. Is the word “obtuse”?
When I first told my brother about it, his comment was, “Well, you’re headed into uncharted territory. Don’t give up, they’ll find a cure for it.”
For a while, I felt like a pariah, but then I realized that I only see them maybe once a year anyway (we live about 12 miles from each other), so screw 'em. I have called just to check in every other week or so and get told, “We’ll have to go out and eat, I’ll give you a call, etc.”, but it never happens. No invitations for the holidays, nothing.
D’s side of the family is much more understanding and have been to the house several times, and actually ask me how I’m doing with my illness and what my latest symptoms are. A sister in law on that side of the family also has dementia, and I think they like to compare and that is very okay with me.
As I’ve said many times before, my family here is just as important to me as my immediate one, and when we “talk” about this, I like that we share information and anecdotes. I know that many times I have written things here which might be deemed inappropriate (I do this in real life as well:)), goofy, and sometimes I don’t make a whole lot of sense or I’ll freak out. On the “good” days I’ll reread some of the things I’ve written and often I’ll say to myself, “Jesus, Bill. What in the fuck is this shit???!!!”
But I think that most of you understand and don’t hold it against me. I encourage joking and light-heartedness with you because it’s my nature to fight adversity with humor and here is where I feel like I can “let my hair down” and not worry about what you may think of me.
The chances that you may know someone with dementia are increasing all the time, and if you don’t know someone yet, you soon will. I’m not worried about y’all, but if you have family like mine and Corcaigh’s, next time they criticize, offer to let them spend the day with you and your loved one, talk to them about what causes the different dementias and the latest research and show them just what it is they don’t know.
In my case, I am fortunate that for the most part, I can still communicate, but I still find myself asking people on the phone, “Please be patient with me, I’m ‘memory impaired’”.
Know why I say that? Because if I say “I have Alzheimer’s or dementia”, their first inclination is to laugh.
It’s just a matter of time when they won’t find it funny anymore.
Thanks
Bill
