Living With Alzheimer’s Disease

Gary and Diane Shelton Even the best of retirement plans can fall apart when hit with a debilitating illness. Alzheimer’s is a disease that most often develops after the age of 60, in the retirement years. There are 5.2 million Americans currently living with the disease and experts predict that number will grow to 16 million by 2050. While Alzheimer’s is frightening, huge strides have been made in understanding and treating it, as well as providing support for families and caregivers. Learn more about the disease, current research, and the benefits of early diagnosis. Discover the extensive services available to help patients, find out which lifestyle activities may lower your risk, and meet a family that is fighting back against Alzheimer’s.

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11 comments

Comment from Charity
at 09/09/2009 :: 02:34:45 PM

Alzheimer’s runs in the maternal side of my family. My maternal grandmother’s father and sister both suffered from it and now she does too. Thankfully she was diagnosed early and is in a clinical drug trial now that we’re excited about. But things are still very hard. It’s quite horrific to see 10 years of someone’s memory disappear almost overnight, but also then fascinating on what memories she is retaining right now.

As my grandmother’s primary caregiver, I see the awful impact Alzheimer’s has had on her life and it has made me think a lot about the future for my mother and I.

My concern is what can my mother and I do to prevent us from developing Alzheimer’s? (She is in her 60s and I in my 30s.) I’ve also begun the conversation with my mother about what she wants if she is diagnosed with it down the road. Is anyone else thinking to the future too and doing what they can now to prevent it? If so, what plans are you considering for the future or what are you doing now to try to prevent this disease? Are you doing brain games like puzzles or learning a new language to try to “exercise” your brain more?

Comment from judy shaw
at 09/14/2009 :: 04:59:44 PM

My husband was diagnosed 8 yrs. ago at age 65. he now goes to an adult day care while I work. Although this arrangement works for us, if something happened to me, he could not be left alone for any length of time. He still knows faces and my name, but he has no short term memory at all. His neurologist recently put him on 9mg of Exelon twice a day to keep him calm as well as 10mg Namenda twice a day. This is working well. One has to be sooo patient with this desease and ignore more than half of what comes out of their mouths. This is the hard part for me but I keep trying. I try not to even think about the future because I know what is down the road, as I used to work in an Alzheimers unit as a nurse. We have our wills made out as well as a living will. This is about as much as you can do. I try doing puzzles and I like to read. We recently downsized to an in-law apartment attached to our former house now occupied by my daughter and her husband. To simplify as much as possible is the best thing to do and it is sooo much better this way.

Comment from Linda
at 09/14/2009 :: 10:20:55 PM

I am worried too. My Grandmother had alz and my mom has it now.

I am very worried about myself also……. Actually scared!!

Is there a test that will tell us if we are going to get this terrible thing.

My dad is 84 my mom is 85. My poor dad is taking care of my mom. Extreme stress for him….. worried about him also. Not alz. just the stress he is under !!

Linda

Comment from Kathy
at 09/15/2009 :: 12:19:37 AM

Linda, I would worry more about the stress your dad is under. He really does need a tremendous amount of support to help him through this new journey he and your mom are on. It is so important that this disease not take two!

You should read all you can, and get as much support services lined up as possible. Your dad will need to have time away from 24/7 caregiving.

I was a 24/7 caregiver for my husband who had Early Onset Alzheimer’s, and passed away at the age of 59, after having been diagnosed only 2 years before! I know what stress is. I know all the steps one goes through in trying to process why this disease came into our lives.

And what I learned from our experience is that you find out everything you can about the disease, about caregiving, about handling stress, and you then face it head on. Enjoy every single moment of every single day, no matter what. That’s all we can do. Do everything! Be concerned – be compassionate – be caring. You may find that you learn more, cherish more, and will be grateful for more, because you face life and its limitations.

I, too, worry about my kids and their chances of having AD. I’m not certain it’s something you “get”, but more of something you might want to find out if you “have”, and then what you can do to maximize your life, and your future.

Good luck as you travel this new road.

Kathy

Comment from Gary L Shelton
at 09/15/2009 :: 07:55:28 PM

Charity,

• Thank you for your interest and for writing a note. I’m sorry to hear about your family’s experience with Alzheimer’s but applaud your efforts to be proactive with clinical trials.
• While there is currently no cure or guaranteed prevention, we now know there’s a lot you can do to help keep your brain healthier as you age.
• Eating a “heart healthy” diet, and maintaining or increasing participation in moderate physical activity, may help preserve our memory and thinking abilities as we age, according to new research reported at the Alzheimer’s Association International Conference. I like to say, “What’s good for the heart is good for the brain!”
• If you’re interested in puzzles and learning more about brain health, check out the new Big Brain Puzzle Book presented by the Alzheimer’s Association at http://www.four51.com/UI/Customer.aspx?p=Catalog&CatID=bn-pxwI8GWIiX9GafaHRRghLN6VAIWbLgX2cLQLjfx1nTrTncaiyfUA-e-e&CatInteropID=01-7037046-PUZZLE_BOOK&CEI=dd5c8a81-5b5d-4027-892b-eb01336376bb.

Good luck

Gary

Comment from Barbara Outterson
at 09/15/2009 :: 10:07:27 PM

When is this to be shown on PBS Channel XXI. Rochester, NY ?

Comment from Mimi Steffen
at 09/16/2009 :: 03:54:15 PM

Many of you who have a loved one with Alzheimer’s are in various stages of worry about the possibility that you’re next.OK, research says there is some risk. The usual estimates are in the range of 2 to 3% and I have seen one as high as 10%. However, the biggest factor by far is age. Did you hear one of the researchers on the program say that about 50% of adults over 85 have some form of dementia. The usual onset is around 65. However, there are others like Gary, who are striken before then. They are called “early onset.”.

That is why it is so important if, at any age, you feel you are having problems with memory or organizational skills, that you did not notice before this, see a medical professional. DO NOT BE SATISFIED WITH,
“EVERYONE FORGETS AS THEY GET OLDER”. If you doctor blows you off, and unfortunately too many do just that. Be persistent. There is a five minute mimi-mental test that can be used as a screening device. Again, if your doctor tells you you did fine, but you know you had to struggle with some, ask for a further evaluation. look for a memory clinic that you can get to.

Finding the disease early is so important!!! And also follow Gary’s suggestion above as to a Meditterean Diet, omega 3, good physical and mental exercise and socialization. Recent research has shown that each of these independently helps with cognition. Taken together, the effect is compounded!!!

It would be good for all to follow that regime, but if you are at risk because of age or family history, it’s doubly important.

Comment from Betty
at 09/16/2009 :: 08:24:28 PM

My Dad had dementia or alz. I had to put him in a assisted living and a secured unit. He walks all the time He has fell several times went to the hospital. The social worker at the hospital said I needed to get him more care before he broke a hip so now I need to get him more of a care unit, but how can a skilled unit keep him from falling.He is still alert and knows us. He has just short term memory. When his money runs out which is soon I will have to fine a skill nursing home because he makes to much to to get assistance on SA because of his railroad retirement, which there is few very few good ones out their that will take Meicaid and men. I tried to bring him home for a week end so I could see if I could again take care of him at home. He walked the whole time and tried to get out of the door to go to the wood to use the bath room. I finally had to take him back to the home. I feel so guilty for having to put him a home but it is only me to take care of him.

Comment from bonnie
at 09/16/2009 :: 10:13:44 PM

I need to know how many of you have annuities set up by your lawyer to qualify your spouse for Medicaid. How do they work. Would you do it again?

#10

Comment from Gabriella
at 09/19/2009 :: 12:22:19 AM

Yes. I would also like to add, that my mom,has been diagnosed with Alzheimers, and is in the early stages. My dad passed away , in December, and so my sister and I had been caring for her. She is becoming very aggitated, abusive, depressed, suspicious, that my sister and I chose to get respite, care in an assisted living home, and she is so depressed there and very bitter towards us. She wants to go home to her house, alone without asssitance, despite what all doctors , social workers, friends, family , have advised, her. The doctors, have told her repeatedly , her choices are to either live with one of her daughters. get a live in aide, or go to an assisted living facility, She is adamant about living alone. Some ONE PLEASE< PLEASE PLEASE ADVISE!!! We have tried almost a year now , to try and appease her by living with her at her home. but we both have families , and all live in different counties. I want her to be happy , as happy as one can be with this horrible disease, but I feel like I am about to have a nervous breakdown. Everyday is an emotional roller coaster……………..

#11

Comment from kate stoddard
at 09/22/2009 :: 10:39:12 AM

My husband was diagnosed with early onset AD at 49 in 1997. I was 43 and we’d just moved into our “dream house” were approved for an internaitonal adoption, everything we’d hoped for. I cared for him at home for 4.5 years and worked full-time to pay for care providers. He spent the last 18 months of his life in long-term care and died in 2003. He was not eligible for Title 19 because he had a pension and I did everything but sell my house to pay for his care which was well over $100,000 for the 6 years he lived with AD.

They call it “catastrophic illness” because it is indeed a catastrophe in all regards: financially, emotionally, socially and physically for the family care provider, and there were few support resources for me as a 40-year old caregiver.

I have a question for other early onset spouses: have any of you experienced post traumatic stress disease (PTSD) resulting from the stress of being a caregiver over many years? After several years of trying to figure out why I couldn’t get my life back together well after my husband’s death, my sister was reading abook about Vietnam vets and said she felt like she was reading about me on every page! After some research of my own, I found a psychotherapist with extensive experience with PTSD, who confirmed my sister’s non-medical “diagnosis” and I have been working on issues of PTSD for several months, with great improvement.

I’d like to write an article about this since I know it can’t be just me that had this experience.

Any thought from other caregivers?

Living with Alzheimer's

Family Stories

Gary & Diane Shelton

The Sheltons were just starting to build their lives together when they were forced to confront a diagnosis of early onset Alzheimer’s disease.

Expert Interviews

Beth Kallmyer

Kallmyer, Director of Client and Information Services for the Alzheimer’s Association, describes the extensive services available to help patients and caregivers.

Peter Davies

Davies, Scientific Director of the Litwin-Zucker Center for Research on Alzheimer’s, explains the benefits of early diagnosis and activities that may lower your risk

William Thies Ph. D., Chief Medical and Scientific Officer, Alzheimer’s Association

Dr. William Thies, Ph.D.

Dr. Thies, Chief Medical and Scientific Officer for the Alzheimer’s Association, describes the disease, current research, and explains how Alzheimer’s will soon touch every American life.