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Old 03-15-2012, 02:33 PM   #1
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Man, I'm scared.

My wife's mother died of early onset Alzheimer's at the age of 63. My wife's grandmother also died of the disease (on her father's side and not early onset).

Doctors say my wife has a 50% chance of also being diagnosed with Alzheimer's and should be tested for the disease after age 40. She is close to that age now. We've spoken several times about the possibilities of what could happen, should she take the test, etc. But each time we drift off onto other topics - it's too painful, I guess.

I don't usually watch the show but today a repeat of the Dr. Oz show aired on the topic of "assisted suicide." Having experienced Alzheimer's from beginning to end and being her mom's caretaker, my wife has expressed that she will absolutely not go through what her mother went through and insists she will take her own life before the bulk of the disease consumes her.

Some may feel it is way too early to speculate anything and perhaps she will never have the disease but this is the love of my life we're talking about. I can't even think about it without bursting into tears and want to do everything I possibly can to help prevent her from even getting the disease.

My questions are: How do you plan for something like this? Is there anything we can do to help keep her brain sharp and hopefully stave off this disease? Is anyone here afraid to also fall victim to Alzheimer's? Has anyone here taken the test because of possible genetics and if so, why did you decide to take it?


Thanks ahead of time. Again, I know it may feel too early for some for me to be worrying about this but I don't want to lose my wife any earlier than is necessary.

 
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Old 03-15-2012, 04:24 PM   #2
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Re: Man, I'm scared.

You don't plan something like this ragged. She may have a 50% chance of getting the disease but she also has a 50% change of NOT getting the disease. Right now you need to focus on the 50% positive and live each moment to the fullest. If you spend the next 20 years fearing what might be it will be impossible to enjoy the time yo have between now and then... when then may never come to pass.

Yes, you need to be aware of the possibilities and you need to be aware of what to look for. Don't be consumed with every lost key but be aware.

Question, was Mom tested for the genetic mutation of hereditary EOAD? Has there been any other cases of EOAD? Is there an older sibling that has the disease? Do they want to test your wife for the genetic component or just test for for MCI or EOAD? Is she sure her Mom had an inherited form of EOAD?

I do understand the fear because my grandmother had Late Onset Alzheimer's disease and it was something my Mom feared. She does not have Alzheimer's which she developed in her mid 70's. Her fear caused us to lose many good years with her. She dreaded the disease. She feared the disease. She imagined the disease. Then she denied the disease. Until the disease became so advanced that she no longer knew to fear the disease she was miserable. I regret the loss of those years before and early in the disease when we should have been enjoying life. Knowing that currently there is nothing you can do to dramatically change the course of the disease, I highly recommend putting the concern aside and enjoying the moments that life gives to you. If she does get the disease assure her that you can love her through anything. If she doesn't get the disease you can both celebrate in your old age together.

For all Mom's fears and all the years wasted in fear... now that she is in the later stages of this disease we have found moments of joy together.

Love, deb

 
Old 03-15-2012, 07:33 PM   #3
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Re: Man, I'm scared.

I want to address this issue about Dr Oz. This show is controversial. Some disabled people complained that the show refused to hear the people who are against it. The show only asked people who are for assisted suicide. It was designed to be a propaganda piece in favour of assisted suicide according to Catholics.

In any case, I am not here to argue about right and wrong about this issue. Just want to make sure you understand that this show cannot be taken as serious as a bible or science. Just like the Dr. K. assisted suicide stuff...
Note that people are used when this kind of thing is going political.

Your wife should not worry so much like this. She would have 50% chance to live well. I got my 50% chance when I had chemo and my cancer was gone in 2001.
It is not fatal. I am sorry her Mom died like that but she should not think that she will get it for sure.

To get it tested is to help you to get ready for caregiving. Not to die! I am not 100% against assisted suicide, but I am not 100% for it either. Life is complicated and it is not so simple. The U.S. has not allowed this thing yet. Perhaps Europe is the place to do it...
But don't give up too early. Enjoy your life with your wife while you can.
Indeed the quality of life in severe stage is terrible, but the patient usually has no idea what is going on and acts like a baby. Usually it is bad in late moderate stage. My FIL did think people could kill him like we kill a sick pet. We told him we could not. He thought the hospital tried to do that in 2009. He is still alive now and he is in severe stage. But it is not for us to stop his life or anyone's life. I believe in God, so I cannot go there if I can do everything possible to take care of the patient.

Take care,
Nina

Last edited by ninamarc; 03-16-2012 at 08:21 AM.

 
Old 03-15-2012, 08:58 PM   #4
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Re: Man, I'm scared.

I truly believe that this, as many other complicated question in our lives, is a matter of personal choice and not something anybody else can dictate. There is no right or wrong... just personal choices to be made.

I do prefer to talk of living with Alzheimer's rather than dying from Alzheimer's. It is a terrible disease but it does not have to take all of the joy out of living. It has been 6 years since I first recognized the symptoms in Mom. As I said in my last post we still have moments of joy and make new memories. I will say that in care giving I have developed a much closer relationship. It has been a blessing in so many ways.

How you deal with the disease has a lot to do with how you think. Yep, I have said that before. If you completely surround it in negativity and dread then that is what it will be. If you make up your mind that you will live well with this disease then that can happen as well. That is why I encourage you to not dwell on the negative or what might be but live each day as if it is your last. Yes, she may get Alzheimer's in 10 years but there is no guarantee that she will even be here in 10 years. Let every day be a blessing void of the dread and frustration of what may be.

Love, deb

 
Old 03-16-2012, 11:23 AM   #5
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Re: Man, I'm scared.

Hey Ragged - Welcome to the board. You've found an outstanding place of support and caring in dealing with this awful disease. I recently lost my dear stepdad to a form of dementia in early January. The loss is still so fresh. So I will speak from the perspective of having just lost someone I loved dearly.

As it got near the end, I found myself so extremely grateful that it wasn't "up to me" as to when he would actually pass away. I had done so much in caring for him, taking care of his and my mom's finances, medical decisions, etc etc, but I realized as the end was nearing, I was incredibly grateful that I didn't have to make that decision.

I have said many times to my sister, "If I get that bad, take me out and shoot me" because having witnessed it all, you look at it from the outside and think "I don't ever want to go through that." However, when it comes down to it......I know I couldn't have done it.......in regard to my stepdad. And having had that experience, I don't know if I could put my family through having the responsibility of taking me out if you know what I mean??

That's alot to ask of someone. I'm with Deb. I have lots of sweet memories of the time I spent with my stepdad these past few years of his illness. I wouldn't trade one single MOMENT of that time, and only wish I would have had more. Selfish I know.....but that's how much he meant to me. I am so glad he is no longer suffering. I absolutely believe that we are eternal beings, so I am glad he is free, whole, healthy, and flying around having a great time now. I know I will be reunited with him someday and for that I am also grateful.

I've probably rambled on, but know that I am sharing from the perspective of a recent loss and wanted to let you know how it feels. Yes, we made a decision to bring in hospice and stop the medical interventions when they were no longer effective. That was hard enough. So - enjoy what you have. I know it's much easier said than done, but try to manage the fear. I won't say "don't be scared" because that's silly. But do try to not let it run away with you. As Deb said, you would love your wife through it **IF** it happened. You would. You really, really would.

Wishing you all the best. Post as often as you feel like. It's an amazing group of folks here who truly care.

 
Old 03-16-2012, 03:04 PM   #6
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Re: Man, I'm scared.

You asked about prevention. It is just like anything. Anti-cancer stuff and etc. Take antioxidant stuff. Exercise. Brain exercise. Eat healthy. Healthy lifestyle. All kinds of stuff that you can think of. There is no specific stuff to take. Q10 or whatever... Research in the website and you will see many. If she has the genes, this may not help. But again, she may not get it in 10 years!

I agree with TC, it is selfish to put the burden on the family to "assist" to die. It is a big burden for the person to do it. Not that she should kill herself but she needs to try to be positive. Here in the U.S. and Canada, it is illegal and a crime to "assist suicide". There are many cases in Canada and the "killers" went to jail.
So there is no point to talk about assisted suicide in the U.S. or Canada unless you want to change the law!
However, the program hospice or palliative care is very good and this can bring her the comfort. I understand it is not what she is talking about, but if she is worried about being uncomfortable, hospice is one hope. If one has cancer, it offers morphine so the person can die without pain.

One reason I really don't like to make this a law or universal is that there is always a question: where is the line? When should I die? When I cannot walk? Cannot talk? Cannot work? Cannot get up? Bed-ridden? Forgot about family and friends? How long after I get sick? When? Where is the line? I am sure this line is personal and biased. If assisted suicide becomes a rule or law, there will be lots of biased situations and it will not be fair to the patients.
The other disadvantage is people will always use this to get rid of someone when they want to commit a crime in extreme cases.

Hugs,
Nina

Last edited by ninamarc; 03-16-2012 at 03:08 PM.

 
Old 03-16-2012, 04:15 PM   #7
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Re: Man, I'm scared.

hello and welcome to our little corner of the world, I too have just lost my mom to dementia, it is so fresh in my mind, Feb.12, 9:30 sunday evening, and yes if I am being truthful those thoughts went though my mind as they did my dads. My mothers passing was not an easy one except for the last couple of days. I have to say that as I look back now I would not trade those last months for anything. My mom and I fought the good fight but in the end the disease won as it always does. I think that it is the traveling of that road with someone you love unconditionally and how you do it will be the memories that you have. At the end of the road I have no guilt about anything that we did, I have only the knowlegde that we did everything that we could to make my mom as comfortable as we could Although that sounds like so little it was everything. take care and like the rest of us take one day at a time and if you are prepared for what happens then enjoy the now...

judy

 
Old 03-16-2012, 07:29 PM   #8
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Re: Man, I'm scared.

I'm glad to see Nina & Judy's replies (note to Judy: I felt the loss of your pain right off of the screen......I am so there with you). I realize it probably sounds really strange to you at this point in time - when your beloved isn't even ill - but I guess you'll have to take our collective "word" for it - as difficult as the dementia / Alz road is to walk......when you find yourself walking it with someone you love so much.....you.....walk it......find yourself grateful for the time spent together......super grateful for the lucid moments / sometimes short conversations where they are their old selves.......and believe me.......miss them like crazy when they're gone.

I just want to encourage you and your wife to focus on the now - on what you have - right - now. Enjoy eachother to the fullest. None of us know what tomorrow holds...........wishing you the very, very best

 
Old 03-17-2012, 02:01 PM   #9
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Re: Man, I'm scared.

I agree with everyone else. There's no sense in living in fear of some disease in the future. Heck, we're all going to die of something. Alzheimers might be your particular fear, but your family members might have a pattern of dying from heart disease, diabetis, cancer, or something else.

Let's hope that there will be signficant medical advances and even (possibly) a cure before she would ever be at risk. Don't assume,by the way, when she enters her 50s that every lost key or forgotten phone number equals the commencement of the disease. Menopause can cause fuzzy brain symptoms, among other things like crankiness LOL.

With respect to your question about testing, I can tell you that we chose not to have our children tested when DH was diagnosed in his 50s. We don't know if his disease might be environmental or due to a spontaneous mutation, since DH didn't have any family history of the disease. We were advised that (1) they are still doing research, so discovering that you don't have one gene that might raise your risk doesn't mean that they won't find another gene in six months. Genetic testing just isn't complete enough yet to give certainty. (2) the odds are uncertain enough that there's no reason to change the way you live your life based on them. (3) there's a chance of a cure or signficant medical advances over the next 10, 20 or 30 years. (4) there are still enough uncertainties about medical databases and privacy. Having information that suggests a risk of a future disease could theoretically impair everything from insurability to employability, aside from psychological damage.

I will say that DH was older than me by almost 10 years, so we didn't live our life as if we were going to grow old together. We thought heart disease would get him, and never imagined Alzhimers. We therefore gave some thought to our bucket lists and prioritized them. I think this is a reasonable thing to do whether or not a couple is worried about an incurable disease. (You never know if someone is going to get hit by a meteor or have something else happen. We all know someone who never got to enjoy retirement.) We worked diligently on our bucket lists throughout our marriage. For example, we renewed our vows in a very exotic location, DH went marlin fishing in South America, and we shared a few other dream-events before DH became sick. I find that it helps me now to know that DH got to live his life so fully. We also used to have a lot of fun talking about our bucket lists, and planning the next event.

Another vote for enjoying life today!

 
Old 03-19-2012, 06:24 AM   #10
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Re: Man, I'm scared.

Ragged. Don't live in fear of what MAY happen.

My wife was diagnosed at the age of 51 with a very rare (and Possibly heriditery) form of dementia call Pick's Dementia. She died 3 years ago March 29 when she was only 53. I have two daughters who could possibly get it some day, but we just don't dwell on that. Not that we try to avoid the possibility, but there's just no point in wasting another day in dread.

My wife's brother and twin sister are fine. Show no symptoms. Why do some get it and some don't? who knows.

I would suggest that you take care of legal things now: durable power of attorney, wills, long-term care insurance, etc... probably something everyone should do. Being prepared is always a good thing, then you can concentrate on living every day to the fullest.

k

 
Old 03-20-2012, 10:38 AM   #11
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Re: Man, I'm scared.

I think you two do not need to discuss it now. She could get it, or she could not get it. She shouldn't get tested for it. If she gets tested early on she will know she has it or is getting it. You two need to enjoy your time together. ANYONE can get it regardless of family history. Does that mean you are going to get tested too? Enjoy your wife. Stop stressing over some thing that hasn't happened. We all get forgetful from stress too. So if she starts forgetting things next week or some thing don't suspect its Alzheimers. You need to chill. Go on a vacation.
If it happens it happens. In sickness and in health. Remember?

 
Old 05-01-2012, 06:49 PM   #12
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Re: Man, I'm scared.

My husband has early onset of Alzheimer's and I am facing the same questions now for my seventeen year old. In weighing this out, I will say that one positive aspect to being tested early is that they can begin to treat for symptoms now... prolonging the effects for a significant time.

Peace, friend. You are in my thoughts and prayers. Lyn McLaurine

 
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