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Old 08-14-2012, 12:32 PM   #1
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Younger Onset Alzheimer's - Seeking Support and Advice

Hello,

I am very new to this forum, and this is my first post. My father first started complaining of memory problems in his mid-to-late fifties; although he was not diagnosed with Alzheimer's Disease until last year, when he was sixty-four and it became clear that he could no longer do his job.

He has always been a sharp, active, intellectually curious, and good-humored person, as well as a loving father. I am proud of him, and throughout my life, I have always been proud of myself for all the ways in which I resemble him. I think like him, I speak like him, and I write like him.

It has been very difficult watching him struggle to come to terms with this disease. Every change that we note in his cognitive abilities is a new heartbreak, and every time I try to search for hope-- positive examples of people living with Alzheimer's, encouraging new research-- instead, I find myself overcome with a sense of despair and hopelessness.

It has been a relentless struggle, and the proactive and optimistic approach that I have always tried to adopt towards most of life's other challenges is not really working for me. My father and I have taken trips together and have had some wonderful times since his diagnosis, but between moments of gratitude for the time we have together, I am often riding waves of grief, anger, and sadness.

Furthermore, if my father's Alzheimer's is, indeed, of the younger-onset hereditary variety, it my understanding that there is a 50/50 chance that I will inherit this disease from him.

I, myself, am thirty years old, and I am in a very loving relationship with a wonderful man. Early in our relationship, my boyfriend had mentioned to me that having children was a very important goal for him. Until recently, this was something that I wanted as well. However, those 50/50 odds are hard to ignore, and I don't know how to make such important decisions knowing there is such a considerable chance that I could become his dependent just as our children would be entering adulthood. I love my boyfriend very much, and I can't imagine willfully putting him in that position someday.

My own brain feels like a liability, and I don't know how to proceed. If I were to undergo genetic testing, and I found that I did, in fact, carry this gene, this knowledge would profoundly affect my relationships, my life plans, my career, and not to mention, my health insurance.

Although I have read that Younger-Onset Alzheimer's is rather rare, I know that I am not alone in this struggle. There may not be a cure or a clear answer to my own predicament, but I believe I can find hope in the strength and wisdom of other caretakers and people afflicted with this awful disease. I have found a support group for the adult children of people with Younger Onset Alzheimer's, and I plan to attend their next meeting in October.

In the meantime, it would be a comfort to hear some advice and the personal stories of others who have faced this predicament as well.

Thank you very much for your input,and for taking the time to read my post.

Last edited by KTCasey; 08-14-2012 at 01:01 PM.

 
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Old 08-14-2012, 01:05 PM   #2
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Re: Younger Onset Alzheimer's - Seeking Support and Advice

Dear KT,

I think there are 2 issues here. I am sorry your Dad has early onset AD (if diagnosed as early onset) and that must be hard to see that he declines at such young age and fast...
It sounds like right now you still can have some good time with Dad. However as you know, you need to think of a plan to take care of him. Is he living alone? Should he live with you? Would he consider the NH's locked unit one day? He will continue to decline and I am sure it is hard to see. You need to get all the POA documents ready so you can be his POA and help him. Get his financial stuff in order so you can do it for him.

The other issue is about this genetic issue. Well, lots of members here have family members who have AD or dementia. So genes is one factor for sure. However, I know for regular onset AD, it is only about 5% chance to get it, but for early onset AD, it is more possible to get it. But it does not mean you will get it. You should ask the doctor about it. But remember, you may not get it. Also everyone has different reasons to get AD, so you may not get the gene factor. Don't panic yet until it is proven. It may not happen. My husband may not get AD just because his late Dad died from regular onset AD.
There are other factors for getting AD. Please talk to the neurologist if you are really worried about it.

Please feel free to vent here. My late FIL and my husband were from the Chicago area too.

Hugs,
Nina

 
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Old 08-14-2012, 01:26 PM   #3
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Re: Younger Onset Alzheimer's - Seeking Support and Advice

(Sorry I must have pressed enter twice.)

 
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Old 08-14-2012, 02:36 PM   #4
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Re: Younger Onset Alzheimer's - Seeking Support and Advice

First, early onset is not always genetic or Familial. Only about 50% is Familial and it can be traced back... did one of his parents have early onset Alzheimer's? If you do have the gene that still does not assure you that you will get the disease. The genetics testing has still not arrived at a point where they can tell you with 100% certainty that you will or will not have this disease. They just have markers that seem to play a part in the disease. If you are tested and you don't have the gene... you can still get the disease. Half of the early onset have no familial connection at all. So unless you can trace back in your Dad's family tree to generations of this early onset Alzheimer's, your changes are about as good as mine Wait... My Mom has late onset but her mother and her grandmother also had it... as did several half sisters and aunts. For me, and I am now 61, I feel that what comes will come and we will deal with it then. I will not let what might happen in the future take the joy of living out of my life. I have a daughter. I live well grabbing every moment of joy I can out of life. Fear of what might be can take that joy away. I might get Alzheimer's.... Mom did. I might get heart disease and vascular dementia.... Dad did. But I am now 4 years older then he was when he had his first heart attack. I might get breast cancer... Mom did. I might get hit by a truck on my way to pick up take out tonight! What I know for sure is that we all live until we die... when and where that date is we don't have control over. So why worry ourselves into a dark hole?

As for as Alzheimer's disease, at this time, there is no good news on the horizon. There is no cure, no effective treatment, and it is terminal. These are the facts. Again we have a choice. We can spend the time we have left focused on the end or we can take it one day at a time and enjoy what we have. When you look at the big picture it's scary, depressing, and can break us down. But if we take it one day at a time it's manageable. Yes, you do need a plan for the future. You need the necessary legal paperwork done. You need to understand the needs of your father in the future and have a realistic view of the disease and where he is in that disease. But do not get funnel focused on the negative. If there are moment of joy then focus on those. My Dad was diagnosed with Vascular dementia in 1998. Mom was diagnosed with Alzheimer's in 2006. We lost Dad March of 2010 but I still have many moments of joy with Mom. I could not imagine spending the last 14 years taking care of them if I had stayed in the darkness this disease can create. I can't eat the elephant but I can nibble away every day until it is over and actually enjoy it

I will say that I was the poster child for a Daddy's girl. He was my rock, my hero, and the one that grounded me. A glance in the mirror and I see his face looking back at me. He was the one that gave me the answer I needed to go forward. One afternoon in frustration I ask "WHY!?" His answer back to me, with a smile, was "Why not!?" It is what it is and we deal with it. It is not because of anything we did... it is just something we were given to handle. We can let it crush us or we can let it make us stronger. We can let it tear us down or build us up. It is not what we are give to deal with but how we deal with it that matters!! So hang on to those moments of joy and try to not focus on the negative. Hopefully we will get good news one day soon... but until then we have to make this the best it can be.

Love, deb

 
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Old 08-15-2012, 02:14 PM   #5
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Re: Younger Onset Alzheimer's - Seeking Support and Advice

hi and welcome. i am sorry to hear about your dad. this disease will only get worse. you are young and we dont know answers about the future. we dont know when and if this disease will strike. go on with your life and live it to the fullest. if you want to marry and have children that is wonderful.

 
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Old 08-15-2012, 02:19 PM   #6
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Re: Younger Onset Alzheimer's - Seeking Support and Advice

KT,

Go ahead marry him and have kids. You will never know. You may not even get it. Please don't worry so much - there are many factors for getting AD.

Hugs,
Nina

 
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Old 08-17-2012, 04:59 AM   #7
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Re: Younger Onset Alzheimer's - Seeking Support and Advice

Early Alzheimer's if that's what your father has is a heartbreaking occurence, but you can make better or worse out of it. I read a book by a woman named Joanne Koenig Coste, "Learning to Speak Alzheimers". You can't "rehabilitate" the disease since it is by definition degenerative. But you can make the path easier for your father and yourself and do positive things. I highly recommend her attitude. It was very humane and encouraging.

There are a lot of things you can do for yourself to prevent the onset of dementia in yourself. I know that my MIL was very concerned about this for herself, given the history of it in her family. She did somersaults in the pool that were supposed to help. She died in her eighties without a hint of Alzheimers.

 
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Old 08-20-2012, 01:41 PM   #8
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Re: Younger Onset Alzheimer's - Seeking Support and Advice

Thank you so much to everyone who has replied to my post. I'm sorry I'm a little late with my response. I was traveling, and I didn't have access to a keyboard.

I am very sorry to hear that each of you have been touched by this disease. I am still adjusting to my father's diagnosis, and it has been a very difficult process, so I really appreciate your advice.

In response to your questions, Nina, I do not live in the same city as my father. This presents a different set of challenges for me, but he is lucky to have my mother and my three adult siblings back at home to help him. Also, my mother is a nurse who has many years of experience working with Alzheimer's patients in a retirement community.

I live about five hours away from my family, so I am trying to do as much as I can to be helpful. I recently took a wonderful trip with him to one of the places he used to love to visit before I was born, and I have tried to go home as often as I can. I have also tried to attend a few of his doctors' appointments with him, and honestly, it has been a bit of a welcome distraction to focus on more practical matters like making sure he pays the bills on time. Nonetheless, sometimes I feel very frustrated wondering what more I can do to help.

Also, Deb, I particularly appreciate your optimistic approach toward the future. I don't know enough about my father's family history to know whether Early-Onset Alzheimer's runs in his family, so I don't know the likelihood that I would inherit such a gene myself. I guess that my father's Alzheimer's is trouble enough, and I shouldn't waste so much energy thinking about problems that I don't have yet.

Anyway, thank you all for your thoughts. You have really helped me to calm down. Nonetheless, I don't expect this to get any easier, so you will probably see me on here again before too long.

Thanks again, and best of luck to you all.

 
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Old 08-20-2012, 07:23 PM   #9
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Re: Younger Onset Alzheimer's - Seeking Support and Advice

KTCasey, I do hope we see your typing here before too long It does help to hold beneficial discussions with others in the same situation. A burden shared is truly lighter.

I did the long distance caring for a while and I truly believe, in some ways, it is more difficult. It has a completely different set of problems. It is good that you are trying to visit as often as possible to spend time with your Dad and to do things that are helpful to your Mom. Yes, it is helpful to focus on the practical things. That gets your mind off the emotional roller coaster you can find yourself on. Practical things are in the moment and if you can keep your mind in the moment it will help.

Acceptance of this disease absolutely has a learning curve. It takes time to come to terms with the slowly losing a loved one. Just remember to find the joy and humor in the moment and leave the future to the future. If you try to grasp the whole situation at one it will overwhelm you. Yes, the disease will get worse but your ability to deal with each moment will get better. Even though I have lost my Dad and my Mom is in the later stages of this disease, I am better equipped to deal with the personal emotional aspect of this disease. Hang in there

Love, deb

 
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