Oh, Kerrie...here's a lame internet hug right back at you. This is such an incredibly hard thing to go through. I think dealing with dementia is in many ways much harder than dealing with cancer or serious heart disease (since we've had all three in my very small immediate family, I feel qualified to make that assertion!). It's so much harder to diagnose and certainly harder to treat. And the "life implications" are more complicated as well. It's hard not to get frustrated with the person who has dementia, even though you know good and well they can't help it any more than they could help it if they had a heart attack.
And people seem to withdraw from friends/family with dementia much more than they would from someone with another illness. When I had breast cancer, nobody was reluctant to be around me, but my mom's friends--and these are lifelong, extremely close friends--are disappearing. She hasn't seen her best friend since high school (50-plus years of friendship) in months, and they live in the same small town.
It just sucks. I interviewed someone the other day and one of the questions was which disease they would eradicate if they could choose just one. The interviewee said cancer, and my first response would have been that too...but honestly, I think I'd choose dementia (if I could eliminate all forms). It may not "kill" people directly, but it destroys lives in a much more insidious way. Cancer is an enemy you can fight, but right now there's precious little you can do about dementia.
anyone still around here? My dad (61) was just diagnosed today. My mom was pretty much a mess when I talked to her earlier.
My dad's mom and all 5 of her sisters had AD and my dad's sister was diagnosed with AD when she was 60. He's been concerned about it for over a year now and he's the one who initiated being tested. unfortunately it took them a year to come to a conclusive diagnosis.
I'm not really in shock right now, because it's something I feel like I've expected, but I don't know how to deal with my mom. she's very non-emotional and completely indirect, so you can't just talk to her about things, but she's obviously very upset, though she keeps saying it's great they have a diagnosis, then proceeds to plan his disability retirement and his last years of caretaking as if he's not still the same guy he was yesterday.
I realize it must be earth-shattering for her, knowing how it'll end and that it'll be much sooner than either of them would like. I just want her to get control of herself and help my dad rather than plan his funeral.
I don't know. He just got his diagnosis this morning. he spent the rest of the day at work. my mom went to my brother's tonight to tell him, but my dad didn't want to go. I don't think he's ready to talk about it yet.
they started him on aricept, but I really don't know much more than that. he sees another Dr. tomorrow.
I hate thinking about what he (and the rest of us) all have to face in the years ahead. it's been hard to have grandparents go through it, but I can't imagine seeing my dad fade away.
I'm so sorry about your grandma. I know she was so very important to you. a special lady.
I am going through this too. My Mom has been declining for a number of years but it has escalated over the past year. She refuses to take aricept as she tried it once (literally one dose) had a huge panic attack about it and now won't try it again.
She wants to still live on her own, but she is really borderline at being able to manage it. She calls seven or eight times a day with panic issues, and the more she panics the worse her thinking patterns become. It's pretty much hell.
We are looking at ways to get her some in home help, but I fear that a controlled living environment is not too far off.
This is a hellacious disease, and I so empathize with anyone who is having to deal with it. Lastly, I also recommend the book The 36 Hour Day, it;s been invaluable as we are walking through this.
"If you don't pray in my schools, I won't think in your church."
i just want to pass this along for everyone who's dealing with this. my aunt (my mom's sister) started showing signs of dementia/ alzheimers in 2001/2002. she was given a cognitive test and a basic scan and they diagnosed her with alzheimers in 2003 and she was treated as such. she was in her mid 50's at the time. years passed and her motor function, depth perception, confusion, sight, etc all got much worse.
this last year she started having problems walking. she saw a new doctor in houston's medical center and he did a more thorough/ expensive scan. turns out she never had alzheimers. she had fluid accumulating on her brain. a relative simple fix was a shunt. had she gotten the proper diagnosis initially, she would have suffered no long term effects. as it stands, while she's regained some of her neuro functions, she does have permanent brain damage from the pressure of the fluid for such a long period that she will never recover from.
about 6 months after this, they had a guy on grey's anatomy with something similar... izzy's teacher i think.
anyway, all of this is to say make sure you have the proper diagnosis and that your dr's have checked for fluid on the brain. they don't know why the fluid collects there, but we have learned it's a pretty common mis-diagnosis.
Bumping this up to see if anyone can recommend a good online community for dementia support? Specifically for people whose parents have it but they aren't the caregivers. My father has dementia and has had it for some time now, but as it's getting worse I'm feeling the desire to connect with others who can relate. My OL and IRL friends are great, but they can't relate. They may have a great-aunt or grandparent with Alzheimers or dementia, but not a parent. I feel angry sometimes that I have a parent with dementia and I'm only 34. It doesn't seem fair. Also, this started when I was in my 20's, so I can't help but wonder if my own girls will be dealing with my dementia when they are young too.
Anyway, I plan on ordering the book a few PP mentioned but if anyone can recommend a online support network I'd appreciate it.
Honeygirl - I'm sorry to hear you're going through this. My MIL was diagnosed almost 6 years ago and she moved in with DH, DS and I about 2 years ago. A couple months ago we had to move her to an assisted living center as we could no longer manage/monitor her wandering at home. The anger and frustration you mention at the unfairness of it all is something my DH has struggled with as well. He, too was in his twenties when she was diagnosed and is 34 now. Although we didn't seek out support groups, we did get a wealth of information from our local chapter of the Alzheimer's Association. They even offered local groups, we just didn't partake. Anyway, I'd encourage you to contact them. The overall organization's website is www.alz.org and they should be able to direct you to your nearest chapter.
Thanks macgirl, sorry to hear that you understand. I can't imagine what it must have been like to be a caregiver. My mother takes care of my dad and they live in another state, so although it's difficult I don't have the day-to-day stresses. They still visit me and although there are many challenges that go along with that it is temporary. Of course, we don't know how much longer those visits will be possible. This last time they came dad got lost in a Denny's bathroom.
I've looked at the alz site before but it didn't seem that the local groups were appropriate, since I'm a child of a parent with dementia but not the caregiver. Well that and I'm younger than the other people whose parents are in their 80's & 90's, mine is in his 70's now. I will look again though, at least for information.
I'm going to be reading along-my mother was diagnosed in October with multi-infarct dementia. It's been a hellatious 6 months (she had a stroke mid-August that brought this all on) and although she's stable now in an assisted living home near us, it's overwhelming at times. I need to read through PP and see what others recommend. I'm sorry for those of you who know what I am dealing with. My friends IRL have no idea how to relate as I'm only 38, and pretty much every "child" I've met through the group where Mom lives is over 50....
I hear you busybee, that's why I'm hoping there is an online community somewhere that is a better fit. I'm usually able to find what I want online but not this time.
I talked to my mom today about dad's dx and asked if he'd had a MRI in case what amygrrl posted before could be his issue. She knew exactly what I was talking about and said that he didn't fit the profile.
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