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Alzheimers and dementia are all over my family and now that I'm nearing 50, I'm starting to obsess about it and worry. I used to think "oh, there will be a cure by the time I'm old" but now I'm not so sure. I know this is pointless because I'm either going to get it or not or there will be a cure or not, but for those of you also worried or with a family history, are there things you do or do not do? eat or do not eat? And what about putting your desires down in writing - is there some document I can write telling my kids what I want them to do if I get it? I can't stand the thought of them having to go through what so many other people in my family have gone through, including me with my parents and grandparents. I'd like to write something telling them that if I get really bad, I don't care where I live, to not spend a lot of money, I certainly do not want them moving me into their houses, etc. If assisted suicide is available, I'd probably go that route. That's just how I feel about it. I know there are lots of other diseases that are horrible too, but my expereinces have been with long-term Alzheimers and early-onset Alzheimers. And I know my kids might want to do things to help me, or feel guilty if they don't - but I would like to try and head that off.
Alzheimers and dementia are all over my family and now that I'm nearing 50, I'm starting to obsess about it and worry. I used to think "oh, there will be a cure by the time I'm old" but now I'm not so sure. I know this is pointless because I'm either going to get it or not or there will be a cure or not, but for those of you also worried or with a family history, are there things you do or do not do? eat or do not eat? And what about putting your desires down in writing - is there some document I can write telling my kids what I want them to do if I get it? I can't stand the thought of them having to go through what so many other people in my family have gone through, including me with my parents and grandparents. I'd like to write something telling them that if I get really bad, I don't care where I live, to not spend a lot of money, I certainly do not want them moving me into their houses, etc. If assisted suicide is available, I'd probably go that route. That's just how I feel about it. I know there are lots of other diseases that are horrible too, but my expereinces have been with long-term Alzheimers and early-onset Alzheimers. And I know my kids might want to do things to help me, or feel guilty if they don't - but I would like to try and head that off.
You are not alone. Many people worry about this. My father worries about this like crazy.
You know what helped him? He got educated about it. He even saw a Neurologist with expertise in Memory disorders to have an assessment. He learned quite a bit about his risks, whether he had evidence NOW of having Alzheimer's disease (he doesn't), and what he can do to decrease his chances of developing any kind of "dementia".
These days, the best evidence is for getting cardio exercise (2.5hrs total per week is great). A Mediteranean diet is also highly supported. Keep your blood pressure, blood sugars, and cholesterol under good control. Get enough sleep and if you have sleep apnea, get it treated. If you are depressed/anxious (which I worry you are, from your post), it is also essential for you to get it treated.
And yes - there is a "document" that you can write to tell your children about your preferences. Every state has a slightly different name for it. Living wills, advanced directives are some common names for this document. It is good for everyone at your age to have a traditional will, living will, powers of attorney in place because honestly... any of us could be struck by cancer or a car and have our life changed in an instant.
In an "advanced directive", you can indicate any preferences you have about end of life if you have a serious, life limiting disease. Some states have pre-written forms where you can check off preferences, while others you just write them in. Ask your primary care doctor for the forms, or look for them by searching online for your state's forms.
It would also be wonderful of you to think about what's important to you, and sit down with your children one day and just tell them. If you trust them to follow your wishes, then they will make sure the doctors do it. It is always WONDERFUL if you are thoughtful enough to let your children know of any wishes you have about the end of life.... how you want to live, how you want to be remembered/buried etc... These are hard conversations, but important ones.
What state are you in? If you are near a major medical school /research hospital, you could look to see if their Neurology department to see if they have an Alzheimer's/Memory disorders clinic. They are often look for people from families like yours and may be doing studies/research/clinical trials that might benefit you .... and society. Go for it!
In addition to sfcambridge's excellent post, there is some evidence that an active mind slows if not stops the progress of alzheimers. Learning new things, working out difficult puzzles, that sort of thing. It's worth looking into.
Learn a new language and use it. Studies have shown that the more languages you speak, the less chance you have of developing dementia. I suspect that reading/playing music counts, but it wasn't included in the study.
You may want to read Grain Brain by Dr. Perlmutter. Has some interesting ideas and I have reduced my gluten intake as a result.
LoL...I was thinking that you are older than I, but I will be 48 next month, so I"d better get back to spanish class!
The idea that keeping your mind active can slow or even stop Alzheimer's hasn't been borne out very well by research and experience. There are plenty of brilliant, active people who have gotten Alzheimer's. That said, it couldn't hurt to do things like learn a new language, or learn to play a musical instrument, etc. sfcambridge gave you some good advice. My Mom had Alzheimer's, and it runs on her side of the family. I try not to obsess about it too much. If I DO get it, I want to know about it early, when I can take steps to end my life. The thought of ending up in a nursing home like my Mom, unaware of who was there, screaming all the time... well, that thought horrifies me.
I remember reading this brilliant woman's journal articles and books years ago. This story in the NY Times about how she dealt with the Alzheimer's diagnosis gave me much to think about (caution: suicide content in article):
Alzheimers and dementia are all over my family and now that I'm nearing 50, I'm starting to obsess about it and worry. I used to think "oh, there will be a cure by the time I'm old" but now I'm not so sure. I know this is pointless because I'm either going to get it or not or there will be a cure or not, but for those of you also worried or with a family history, are there things you do or do not do? eat or do not eat? And what about putting your desires down in writing - is there some document I can write telling my kids what I want them to do if I get it? I can't stand the thought of them having to go through what so many other people in my family have gone through, including me with my parents and grandparents. I'd like to write something telling them that if I get really bad, I don't care where I live, to not spend a lot of money, I certainly do not want them moving me into their houses, etc. If assisted suicide is available, I'd probably go that route. That's just how I feel about it. I know there are lots of other diseases that are horrible too, but my expereinces have been with long-term Alzheimers and early-onset Alzheimers. And I know my kids might want to do things to help me, or feel guilty if they don't - but I would like to try and head that off.
I know how you feel, I am pretty sure I'm going to have it, and my poor memory is already the joke of the family...I keep saying "what exactly is the dividing line between dementia and ADD?". You can't obsess. Control what you can, which is keep your brain sharp (apps like Lumosity or crosswords, take a language class, etc), eat healthy and exercise. I also take vitamin E and other supplements. You can even find studies to take part in if you want, there are drug companies who seek people with familial risk to try different preventative measures. You can find them online.
In regard to making wishes known, I have a checklist I got in a seminar book (I'm an occupational therapist) that you fill in when early stages. It covers everything in your daily life, like "I like to take baths, not showers", "I am never hungry when I first get up" "I like to go to sleep with the TV on" so if you are ever in a position where you can't make your needs known, people will know your preferences. I will try to find it online if I can.
Also I haven't done this yet, but I want to...I want to get tested to get a baseline of my cognitive status now, so I can objectively measure if it is declining, and if it's normal decline or not.
After you do all you can do, you have to just let it go. Obsessing and worrying is only going to accelerate cognitive decline (stress definitely affects memory) and waste the precious time you have now. You could get hit by a bus while you're walking along lost in fearful thoughts of Alzheimers, then wouldn't you feel foolish? Enjoy now and live each day to the fullest, it is all any of us can do.
I've read that maintaining socially activity will help slow down dementia because you use and retain your verbal skills. A lot of people start shutting themselves in when they get old and their friends and kids move away. I take my mom out to interact with other people, get her newspapers and magazines, and make a point of having discussions with her about things she sees in print or on TV. I think it's important to regularly introduce new things so she's stimulated.
The standard medical advice I've read is to exercise regularly, keep blood pressure and blood sugar levels under control, and to get rid of inflammation as measured by CRP levels. Address disease which can raise inflammation. UTIs, arthritis, and dental infections. Personal hygiene is going to play a big role in two of the three.
I'd look into giving him Omega 3 fish oil, vitamins D3 and K2, and vitamin B complex. The first is to reduce the buildup of plaque in arteries in the brain. Vitamins D3 and K2 are taken together to reduce inflammation in the arteries. Vitamin B complex is taken for the nervous system and the brain.
The idea that keeping your mind active can slow or even stop Alzheimer's hasn't been borne out very well by research and experience. There are plenty of brilliant, active people who have gotten Alzheimer's. That said, it couldn't hurt to do things like learn a new language, or learn to play a musical instrument, etc. sfcambridge gave you some good advice. My Mom had Alzheimer's, and it runs on her side of the family. I try not to obsess about it too much. If I DO get it, I want to know about it early, when I can take steps to end my life. The thought of ending up in a nursing home like my Mom, unaware of who was there, screaming all the time... well, that thought horrifies me.
I remember reading this brilliant woman's journal articles and books years ago. This story in the NY Times about how she dealt with the Alzheimer's diagnosis gave me much to think about (caution: suicide content in article):
I discovered that my best friend, also a University professor, had been diagnosed with early onset Alzheimer's the day that I asked her to write "Happy Birthday" in Russian to one of my students. She sadly told me that she was unable to read or write in Russian anymore (she had been fluent in several languages) and told me that that she had just received the diagnosis. In less than two years she was dead at age 54. Although, it was never confirmed by her family I strongly suspect that it was suicide.
This was almost a decade ago and I still miss her very, very much and think about her often
Post #2 has some really excellent suggestions. In addition, I would suggest reading the chapter on reducing one's risk for dementia inHow Not To Die by Dr. Michael Greger. FWIW, the book is a 5 Star Best Seller on Amazon. All proceeds from the sell of the book, audio-book and DVD go to charity.
Here's just one tidbit from it. Although Nigerians have a high frequency of a gene thought to be related to Alzheimer's, few of them actually get it.
Dr. Greger believes it is due to their plant-based diet.
Last edited by pacific2; 12-28-2015 at 07:24 PM..
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