In my experience, the worst part of the early onset part is that physically the person is pretty healthy so this disease drags on for so long until the body starts shutting down due to the person not being able to swallow, etc. it's seemingly no end in sight and no real prediction as to when it will "be over". We knew in general on average people said about 10 years from diagnosis, but when you're sitting at year 8 or even 9 and seeing the state the person is in and what his/her loved ones have already been through and not seeing some light at the end of the tunnel. It's grueling and heartbreaking.
ALL the tears... My MIL just passed from this in August. It was a long 8+ year really difficult battle for our family and I am terrified - TERRIFIED - I may have to see my husband (or anyone else I love) through this.
ALL the tears... My MIL just passed from this in August. It was a long 8+ year really difficult battle for our family and I am terrified - TERRIFIED - I may have to see my husband (or anyone else I love) through this.
I am so sorry for your loss and for your family's struggle, and I wish the best for your HH.
Post by imojoebunny on Nov 4, 2015 10:44:45 GMT -5
We are on our third generation of women with Alzheimers. Each one has had onset younger than the last. My aunt before 60. It is a sucky disease. It bugs me that they always say, stay sharp and fit, as if that is a real prevention. All the women in my family were sharp and fit, active in their communities, and intellectual. My aunt still enjoyed working out, even when she could no longer remember how to dress herself, or her grand kids. She is in deep now, and mostly gone, with only occasional flashes of light, but she is still in pretty good physical shape, and enjoys walking with her caregivers around her farm. She is the least agitated of the group, thanks to better meds for keeping her calm. My great grandmother used to bite people and run away from home, if her care givers fell asleep in the night.
We are on our third generation of women with Alzheimers. Each one has had onset younger than the last. My aunt before 60. It is a sucky disease. It bugs me that they always say, stay sharp and fit, as if that is a real prevention. All the women in my family were sharp and fit, active in their communities, and intellectual. My aunt still enjoyed working out, even when she could no longer remember how to dress herself, or her grand kids. She is in deep now, and mostly gone, with only occasional flashes of light, but she is still in pretty good physical shape, and enjoys walking with her caregivers around her farm. She is the least agitated of the group, thanks to better meds for keeping her calm. My great grandmother used to bite people and run away from home, if her care givers fell asleep in the night.
It is hard all the way around.
Are you hearing people saying to stay sharp and fit specifically in relation to Alzheimer's or for aging generally? If it's the former, then yeah, that sucks because it can strike even the brightest and fittest of people.
But maybe they're just talking about aging generally? I worry about this with regard to my MIL. She's in terrible shape and is already on full-time oxygen therapy at the age of 58. So she seems much older than my own mother, who is 65 but very active. I really worry about what my MIL's life is going to be in her 60s, if she makes it to see them.
I'm sorry about your family members. And everyone else's. It's so terrible.
We are on our third generation of women with Alzheimers. Each one has had onset younger than the last. My aunt before 60. It is a sucky disease. It bugs me that they always say, stay sharp and fit, as if that is a real prevention. All the women in my family were sharp and fit, active in their communities, and intellectual. My aunt still enjoyed working out, even when she could no longer remember how to dress herself, or her grand kids. She is in deep now, and mostly gone, with only occasional flashes of light, but she is still in pretty good physical shape, and enjoys walking with her caregivers around her farm. She is the least agitated of the group, thanks to better meds for keeping her calm. My great grandmother used to bite people and run away from home, if her care givers fell asleep in the night.
It is hard all the way around.
Are you hearing people saying to stay sharp and fit specifically in relation to Alzheimer's or for aging generally? If it's the former, then yeah, that sucks because it can strike even the brightest and fittest of people.
But maybe they're just talking about aging generally? I worry about this with regard to my MIL. She's in terrible shape and is already on full-time oxygen therapy at the age of 58. So she seems much older than my own mother, who is 65 but very active. I really worry about what my MIL's life is going to be in her 60s, if she makes it to see them.
I'm sorry about your family members. And everyone else's. It's so terrible.
It implies that people who get Alzheimers do not do these things, and that is not at all true for any of my family members, or for the guy in this article. My aunt was "woman of the year" for her volunteer and professional efforts in her town a few years before this set in. She was fit and healthy, with loads of friends. Same with my grandmother and great grandmother. I am not saying that being fit and healthy is bad advice, just it implies people who do those things won't get alzheimers, which is not true. I think there are multiple causes of what is labeled alzheimers, and it is misleading and leads to less funding to think, "Fit, active, healthy people won't get it", in the same way that lung cancer is less funded because people think, "only smokers get it."
Post by tacosforlife on Nov 4, 2015 11:29:37 GMT -5
Gotcha. Yeah, I can see how that can be frustrating. You've obviously read a lot more about this than I have. All the stay fit and stay sharp advice I've seen has been in the context of aging generally, which is totally appropriate IMO. I mean, freaking Pat Summit has early onset Alzheimer's - we are not talking about a lazy dumb-dumb here!