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I Have Alzheimer’s or Another Dementia
Planning for the future
Both of my parents had Alzheimer's and/or dementia. I am at a high risk, and would like to develop a detailed care plan for my future, if I do get the disease. I am at the age when they began showing symptoms.
I know what the disease looks like, and how to manage things well enough. I know the good parts and the not so good parts. I've seen a variety of care scenarios, living at home, and in assisted living, and or nursing homes.
I'm married to a physician who is older than I am. So I would need a plan that factors his age into it.
I am not just talking about end of life decisions, but the smaller issues like where I live, who can visit, what kind of clothes are comfortable, etc.
My husband and I have an appointment with an elder care attorney, for all the rest of the paperwork. She a care plan with my wishes should be done now. I have two long term health care insurance policies.
In the mean time, I retired early, bought a condo in Florida, and enjoy the life I have now.
Has anyone done this? Do you know of any templates? I've searched the Internet and can't find anything. I may have to make one up!
Welcome pabrocjb. You are already doing what I call being a Dementia Pioneer. You are being proactive about your care and your future. Keep reading and keep asking questions. Use this time to do whatever might be on your bucket list. Spend quality time with your loved ones.
Many members follow Best Practices, which are lifestyle habits to improve and support memory and cognition. Also, whatever is good for heart health can be good for brain health.
Take medications as prescribed.
Eat a Mediterranean Diet with fruits and vegetables for antioxidants; eat fish and walnuts for omega-3 fats; limit red meat.
Exercise to tolerance.
Keep your brain stimulated with new learning.
Continue to socialize.
Get good restful sleep.
Avoid stress and use stress-relief techniques.
Explore complementary medicine, such as aromatherapy, if you are interested.
PPlease keep us informed of your progress.
Dear Pabro, first of all, i am sorry that you already had to deal with such a hideous disease already. I hope your doctor(s) are going to b as proactive as you are with dealing with ur future!
I applaud you on joining this forum, and you will receive verey good advice and support as u can see from the responses you hav already had. I hope you will continue posting, whether it b to ask a question or to vent your frustrations. No question is too big or too small.
I, myself, am encouraged that you may hav some answers that i may hav, as i was diagnosed with Early Onset Dementia, and you hav experience with the disease with your parents. You are a VALUABLE resource to us "newbies." On the contrary, you hav seen first hand, all the symptoms, progression, and trials of dementia. As my neurologist told me, its actually harder being diagnosed early, as we are MORE AWARE of each new sign of the disease, and are thus more frustrated by each new loss of cognition.
May i ask what type of dementia did ur parents have? I dont know if youve had a genetic test done, but you may want to check into that. I think they are about $180.
You are SO BRAVE to tackle the logistical issues with an attorney. My doc told me i should visit various care facilities to see what care is available, which i was only able to visit one as i got pretty upset by the fact everyone was in their 80s-90s and i was 65. It was a beautiful place, tho, so someday i will go visit the other care places in my city.
Your rite about doing things on your bucket list! Ive been going to a counselor to help deal with all the emtotions and fears i hav about dealing with the disease. He has really helped and encouraged me! Each session he lifts my spirit but also holds me accountable to getting my life in order bfor i can no longer make decisions on my own.
So, what ive been doing (besides all the legal paperwork), is to make a list of things that i would like if i wasnt able to communicate my wishes. Sinc research has shown that music is very beneficial to people with dementia, i hav been gathering a huge array of songs that hav been my favorite from the past 5 decades of my life. I hav grouped them into RELAXING songs, ENLIVENING (faster tempo) songs, and INSPIRATIONAL songs such as hymns. That way, when i cant express my wishes, my caregivers can play music that i ESPECIALLY LIKE and mean the most to me!
Additionally, i am making a list of other things that i like, such as favorite foods, beverages, breakfast foods, snacks, and desserts. From what ive learned so far is that as the disease progresses, we lose our sense of smell, can lose our appetites, and not drink enuff fluids to keep hydrated. So on my beverage list ive also included cranberry juice sinc it helps in preventing urinary tract infections. One of my other medications causes constipation, so ive included on that list, also, prune juice every a.m. with explanatiom to staff that my medication causes constiptation. I truly believe that most staff want to do what is best for the patient, so in whatever ways we can inform them of our desires when we're not able to, will assist them in helping us will make us happier.
Im also making a list of my DEAREST relatives and friends and put that on my REMEMBRANCES List. That way staff can intereact with me on a more personal basis with specific named of people that were especially important to me! Sometimes friends hav been more important to me than some of my relatives (sorry to say), so i believe having the names of our closest friends will also be nice prompts of our memories!
Sinc i was an animal lover, but in later stages of my dementia, i wont b able to care for a pet, i am goi g to get one of those "JOY for ALL" stuffed animals that look, sound, and even move. That way i can pet the realistic looking dog and cat and hav them interact with me. Again, research has shown that animals are GREAT therapy, so i will also ask care places if they hav pet therapy animals come into the facility on a regular basis.
In other words, im gettimg together things, photos, music, and any other thing that brings me enjoyment NOW. Those things will still b important to me and therapeutic when im in the later stages of dementia.
So thats my two cents worth...my last suggestion would b to hav LOTS of humor in ur life---read the comics, watch funny tv shows and movies, and when u go to the store, stop and read at least one funny greeting card. Anything that makes u laff, is especially important now to helping you to remain as upbeat as possible!
Hang in there
and God Bless you to the moon and back!
Pabrocjb, have u seen the movie "The Notebook?" If not, or if its been quite awhile sinc uve seen it, i would like to suggest you watch it (again). I also recommend this song as it is very touching and reaches into the soul of dementia:
Thank you for your welcome and good advice.
I do try to eat well, and get exercise. I've taken up kayaking and love it. I also have dogs that get me out many times a day.
But, my son came back from overseas. We have to "help" him catch up on his Ben and Jerry's intake. I am now on a diet.
Sorry, I'm just learning how this website works.
This is a long story, and this is part one! Good luck reading all this:
First of all, my husband is a smart, well regarded psychiatrist, age 76. He's boarded 1/2 in psychiatry and 1/2 in neurology, and he certainly understands the brain. My internist is a Mass General rock star. When the three of us get together I figure my risk of getting Alzheimer's is 99%, they rank it somewhat lower.
My maternal grandmother, and her mother had Alzheimer's. My mother had Alzheimer's*. She was diagnosed around age 70. She was happy, and enjoyed naps in the sunshine, games on her iPad, visits from family, music, etc. She died of a stroke in her early 80's. Her sister was diagnosed in her early 60's. She actually diagnosed herself in a cross country plane trip to a family wedding. She is still alive, although failing, at 81. Three other of their siblings did not have Alzheimer's.
My mother and aunt were healthy, vibrant, athletic, women.
*Alzheimer's is a best guess diagnosis, they did not have a brain exam after they died. But were diagnosed by experienced docs and staff.
My father had a dementia, and it's unclear if it was Alzheimer's. My husband thinks my father had an "organic brain" type of dementia. Dad had normal pressure hydrocephalus, a shunt, but gradually lost ability think clearly, walk, and died of pneumonia in a nursing home. Dad also drank more alcohol than I was comfortable with. He had plenty of people in his family tree who had Alzheimer's including his maternal grandmother and aunt.
My parents went to a graduated care place, independent living, assisted living, and nursing home care. It was nice, expensive, and when they would have run out of money, they would have been kicked out. Dad died there.
We took my mother out of the facility and my sister cared for her at her home for six months, and I cared for her in my home for six months. Both my sister and I are enormously hardworking, and could not do it. Plus, you have to look at the rest of your own life. If you are caring for someone with Alzheimer's and then develop it, there isn't a lot of time for your bucket list.
We put mom in a not for profit, modest, but nice place where she paid a monthly fee. This place was near my home in Florida. I loved it, because I could visit her every day, and yet go home. She had long term health care insurance, and it helped, and when she died she had a little money left over.
Testing: (This is my opinion. I'm not a scientist or a doctor, although I worked in health care most of my life.) It is unclear if you test positive for all the markers, known today, whether or not you will get Alzheimer's. One doctor said there is no single clear test for Alzheimer's like there is for other diseases. And the most recent studies showing a inflammatory aspect to the disease are interesting.
I look at the testing we have now, as four legs of a stool. One is ApoE, tau in cerebral spinal fluid, and PET scan of the brain, and finally symptoms.
I am 69, and as Mom had symptoms at 70, I have had some testing. I've participated in one Alzheimer's research trial, and I've signed up for another. I am heterozygous for ApoE 4 (I don't know the other, and the research study is doing a test right now), I am positive for tau in my csf, and will probably get a PET scan of my brain. I saw a neurologist recently, and passed the mini mental status exam, with a score of 100%, for the first time. I so suck at math, and have never had good word recall.
I have to go, but will write more later.
Thank you so much for your thoughtful responses. I want to address every question.
Good points, Vik!
I am sorry you've gotten this diagnosis. My mother never knew she had dementia. I'm not sure that is a gift or not. You could maybe answer that question? Would you rather not know?
Don't forget things that make you comfortable, what kind of clothes do you like to wear? Does fabric content matter, if it does, write down what you prefer. And what temperature are you most comfortable? What kind of chair/sofa/bed do you like?
Do you want help with grooming? Mom brushed her hair and put on lipstick before each meal in the dining room. I admired that about her! Her shirt may have been inside out, but she tried.
Do you hope to stay at home, or do you plan to go to assisted living? If you want to go to assisted living, as I do, I'd look for a not for profit place. Unless you have mega-bucks, then go for the swimming pool, the views, etc. afforded by a fancy place.
I have a list from my attorney of places to go and look at, but I really like the place my mother was in, a non-profit, not fancy, place, but people who lived there could go out in the sunshine.
Mom would go out to the patio and take a nap in the sunshine after lunch. Not to shabby!
Welcome to our world pabrocib. I'm so glad you found our site. Wow, you do have a history of AD and I understand your concern. You might want to investigate if you have the familial AD. Even if you have, I think your chances are still 50/50. Although with the other marker you have, your chances may have increased. Being involved in clinical trials is great because you get such good testing.
You might want to consider getting a complete diagnostic work up. From your library check out Doraiswamy and Gwyther. In any event, this will give you a base line if you do begin to see symptoms..
Thanks for responding and being welcoming, Mimi.
My husband is horrible. (He's great.) He's a total workaholic. He retired from his every day in the office practice, but treats people around the world. He has an expertise, and has done research, in a niche diagnosis that is still in demand. He also works with a small theater group and they just put on a production this past weekend. Seeing a "central casting" bald, bearded shrink in stage make up is not something I'm used to.
I was in a local Alzheimer's support group when my mother was alive, but feel this is a little different. I'm going to set up a private Facebook group for my cousins, so that I can share what I learned from the course below.
My husband attended a few years ago, I am going this year:
I do try to stay active, eat well, and am not much of a drinker. But I get a bit angry because my mother and aunt did every.single.thing.right. Genes have a particular way of doing us in.
In other news, I feel it's OK to take more risks, how about a motor scooter?
Hey, in Florida, the scooter sounds great.
And even if we live a perfect Best Practices, if we are destined to get it, we will. Best Practices gives us hope for delaying the onset and then slowing down its progression.
I know with your history, it's hard not to worry, but on that scooter you'll be watchijg where you're going and not what's apt to be in the future.
Mimi is right. Following Best Practices has the potential to allow us time to get our affairs in order, to make plans for the future and to spend quality time with our loved ones. Best Practices is not promoted as a cure.