Earl Onset Alzheimer's ....need advice.

• By craig57
• Reply 2883265
• March 3, 2012 at 9:02 am
• Report post

Hi Erinlynn,
My wife, 56, was diagnosed in July last year. She was confused, depressed, would get lost at times and hallucinated. Since being prescribed Exelon and Namenda, I've noticed some improvement in her condition,I.e., the hallucinations have subsided and her depression has lessened.
I've been reading what I can to educate myself about this. Also would like to find others going through this.....there seem to be support groups for caregivers helping elderly folks afflicted by this horrendous disease but not for those of us dealing with early onset.
Craig

• By missmyma
• Reply 2883508
• March 3, 2012 at 10:29 am
• Report post

Hey there...I am very sorry for both of your losses. My mother was diagnosed in her late fifties, so I feel your pain. We all will experience our parents becoming our children if they live long enough. The unfortunate thing for you is that Alzheimer's expedites this phenomenon. You, now, are the parent(caregiver) They will regress to the point where they need someone to do everything for them, just as they did for you when you were a baby. Because we are not wired to take this responsibility until much later in life, it presents a very emotional and frustrating challenge for us, when it happens out of order, so to speak.
There are many resources which have been developing in the recent past, go to the AFA site and the Alz.org site and spend some time reading up on what to expect and where to get help! It would definitely make sense to find a support group to share and find some commonality with others in the same boat.
You are in for a grueling and emotional time. Know that I have met children in their teens whom have parents in their forties, either diagnosed or passed from Alzheimer's. The effects of Early Onset occur more rapidly than if you start in your later years.
People in their eighties may live for 15 years or more, whereas my mom passed in less than ten years. enjoy the time you have now, while you have it! be patient and do the best you can...most of all, be careful to take care of yourself in the process...advocate for her, make sure you demand the best care for her, hold all of those who care for her accountable to do the best for her...know that there are many millions of folks out there afflicted as we speak...5.5 million to be exact! Best wishes to your family, write back if I can help in any way!!
Sign the petition, contact your reps for funding and help get the word out about this terrible plague on humanity!

• By bud1981
• Reply 2884631
• March 3, 2012 at 8:15 pm
• Report post

My husband was diagnoised when he was fifty six. He is now sixty four. We really had a hard time at first, but as time goes on things really change. One of the pieces of advise I would give you is to read, read, read. Ingore all the outsiders who will tell you what you should be doing with your father. You will know best when you have had time to grieve. This is a loss and you will have to have time to grieve. My husbands Dr. suggested that we write a letter to our family members telling them to be paitence with us and explain that we need time together to really grieve over this. We did that and took a lot of flack from his family. Our children have been great with him. Our son will take him for a couple of days when he gets an extended weekend. This brings such joy to my husband. Please do the best for your father. You maybe the only thing he has to connect to the world.

• By Erinlynn
• Reply 2885625
• March 4, 2012 at 10:29 am
• Report post

Thank you all for your heartfelt responses. I know one thing for sure and that is that I want nothing else than my father to be comfortable through all of this. It really helps to talk to others who are going through or have gone through this. @ bud1981, I couldn't agree with you more about the reading. I have read and learned more about this disease in the last 4 months than I could ever imagined. But the more I read and learn the better I am able to understand and cope with things on a daily basis. I think now that I have accepted what is going on with my father, it scares the hell out of me. With the early onset having such a strong genetic predisposition I'm scared to death it is going to happen to me. And then I feel guilty for thinking of myself at this point. It is a horrible battle, but I'm determined that my father and I are going to win it.

• By bud1981
• Reply 2886145
• March 4, 2012 at 2:41 pm
• Report post

Great attitude! You might want to read the book 36 hour day. It was the first one I read. I have others that might help too if you are interested. I am so glad to hear that you are taking an active roll in caring for your father. Believe me, I understand that you are dealing with so much. I often think of our daughters and their chances of having it. One wants to know and the other doesn't. Our youngest is in the military, so she doesn't want to be tested until her career in the military is over. Our oldest one is a nurse, so she sees the importants of knowing, and what to do to prevent early onset. I don't know how I feel about it. Sometimes I think I want to know about the girls, and then, I don't because that would bring on a whole bunch more of stress. I guess I will leave it in the Lord's hands where it is best handled anyway. I hope that you remember to take time for yourself too, because you are no good to him if you are exhausted. Keep in touch, as I check my mail each day.

• By Erinlynn
• Reply 2891602 · In reply to 2886145 by bud1981
• March 6, 2012 at 6:00 pm
• Report post

I completely understand how your daughters feel. I go back and forth every day about whether I want to get tested and know my fate. But ultimately I feel whatever God has in store for me is going to happen. So getting tested or not, I don't think that changes what's in the cards for me! I'm learning to take some time for myself. My father is still in the early stages so I'm realizing that day to day he is ok, and I'm able to take a day for myself without feeling guilty. I would be very interested in your reading recommendations. I'm reading Still Alice right now. It is fiction, but such a vivid picture of what my dad is going through. Have you read it? I just ordered the 36 hour day, so it should be here soon. I'm so very glad I found this website. It helps so much to be able to talk with others going through this.

• By cd52
• Reply 2891810 · In reply to 2883265 by craig57
• March 6, 2012 at 7:44 pm
• Report post

Craig,
My wife was dx almost 3yr ago at age 55. It has been a roller coaster ride... with emotions and knowing me as her husband one minute and completely hostile against me the next. It has been pretty much the last two year that there has been much more not knowing me than knowing me. Just tonite I was fixing supper and she was ranting about how mad she was and didn't want me around... then switched and was very complimentary about how good the food was.
She is in daycare for adults during the day 5 days a week so I can work and requires me to help her with everything. But is all I can do to keep her happy on the weekends.
I really have no place to vent either but on here.

• By Erinlynn
• Reply 2891919 · In reply to 2891810 by cd52
• March 6, 2012 at 8:24 pm
• Report post

It so shocking to me to hear all of your stories of a loved one going through this at such a young age. It robs these otherwise healthy individuals of their lives. I have been doing so much reading and research and I know the early onset is genetic, but it makes me wonder if there are other factors?

• By missmyma
• Reply 2893221
• March 7, 2012 at 10:27 am
• Report post

It is shocking...it is even more shocking that this situation hasn't gotten more traction in the media and with our government!!!
I am not a big government intervention, kind of guy, but in this case the numbers are catastrophic! 5.5 million diagnosed, that we know of!
13.5 million by 2040...as the baby boomers move into prime time for onset, the numbers are staggering!!! Six leading cause of death in the U.S....no cure, nothing to slow it down, and most folks I talk to don't realize that it causes death! Call your congressman, your Senator...sign the petition!!! Get the word out...ADVOCATE, when you can!! My heart goes out to all of you!!

www.alz.org/petition/

• By jjkk
• Reply 3060243 · In reply to 2893221 by missmyma
• May 12, 2012 at 3:02 pm
• Report post

VERY VERY well SAID!!!!! Its funny how they don't even reconize it at all. Even insur. co's .No support at all or asst. programs for caregivers. If you half to quite your job/ What do you do about money/Just a thought!!

• By amc627
• Reply 3062660
• May 13, 2012 at 9:23 pm
• Report post

My grandma had Alzheimer's in her late 60s, which was terrible, but then my aunt was diagnosed at 48. She died last January at 51. My mother retired last year and I started to notice she was not herself, but after seeing my aunt go through what she did...I ignored it. I wish I hadn't. People in her life outside of us told her that they know she's getting confused lately and now she's going in for testing. I beat myself up every day about not saying something sooner. She is almost 59. I am 26 and just moved home from being away a couple years ago, and I am not coping well. I know we don't know yet what it is for sure, but in my heart, I know what it is. I don't know how to deal with it. Both of my parents retired last June after working their butts off for 30+ years (my mom a police officer and my dad a teacher) and I can't believe this is how they will spend their retirement. She is concerned it's her medication (she's on Crestor and a thyroid medication for underactive thyroid), and though I pray that it is that and it's somehow reversible, but I don't know that it will be. I'm terrified for her and for myself and my sister and my dad. I work with someone whose mother died of early onset without ever having anyone else in her family have it and the only link we've discovered between our mothers is that they both have/had high cholesterol and were on medication for it. My grandma and aunt also had high cholesterol. @Erinlynn I also wonder if it's other factors and if I should get tested. So scary. My heart goes out to your family too (and everyone else who is trying to cope). Not many people understand.

• By Erinlynn
• Reply 3063216 · In reply to 3062660 by amc627
• May 14, 2012 at 7:34 am
• Report post

@ amc627.....we seem to be in same boat, you are the first person I've talked to on here my age who is going through this same battle. I would be more than willing to talk with you at any time, I've been dealing with this since last October, not long but I have done a lot of research and wouldn't mind sharing my findings and feelings! One thing in particular I suggest you look at is the high cholesterol medications your mother is on. There are numerous studies that have shown that statin drugs, the ones used to treat high cholesterol have been linked to dementia and early symptoms of AD. I understand the terror you feel for yourself, I am 31, just starting what is supposed to be the core of my life and here I am faced with this horrible disease that could very well be my fate in the next 20 or so years. It is just terrifying. I've decided at this time not to get tested. That's not to say I won't change my mind in the future, but right now I don't think it is something I could handle. I can tell you my reasons why if you'd like. I will add you and your family to my prayers. Just remember, you are not alone.

• By amc627
• Reply 3063377
• May 14, 2012 at 8:56 am
• Report post

When we read about the studies on the statin medications in February (or whenever it broke on national news), we told her to stop taking it. With it running in our family, we didn't need to risk it. She talked to her doctor and he blew her off saying that she was fine, so that appeased her (I think because she was scared and that made her feel reassured - falsely). My sister and I still harped on her to stop taking it, because I mean - of course he'll say she's fine, he's getting paid. Now that other people have been noticing her memory issues, she's finally admitted to herself that it's a problem and she stopped taking Crestor last week. She wants to see an internist who can look at EVERYTHING she's been on and look at the "whole picture". She's a fit woman, always has been, who eats healthy and exercises (police officer - she was required to be)...but her cholesterol and blood pressure has always been high.
 
Definitely would like to hear your thoughts and feelings about all of this too! I go back and forth in between wanting to be tested and not wanting to be tested. Part of me wants to know, but I also think I would be too stressed all the time if I did know and the outcome was bad. I think, deep down, I know that I have the gene - my grandma, aunt and mother (most likely, anyway) have had it and I am a carbon copy of my mother. We have many of the same medical issues and look identical. I think I already know my fate without needing a test, but I'm pretty bitter right now so it's hard for me to think positively.

• By missmyma
• Reply 3063548
• May 14, 2012 at 10:09 am
• Report post

...amc627...first, my sympathies to you and yours!
Have you taken your mom to a neurologist yet? Does she have a diagnosis? If not, find someone who specializes and do that first. As for you and knowing, you may want to find a neutral party or medical ethics specialist to counsel you through the decision. Just a thought, the brain is an amazing thing, many people believe that you can actually manifest symptoms and or the actual disease if you dwell on the thought too much. Remember, all things begin with a thought! Counseling and maybe a support group are an absolute need for you to stay healthy both physically and maentally....don't be afraid to get out there and get help for you!
Best wishes

• By Erinlynn
• Reply 3063730 · In reply to 3063548 by missmyma
• May 14, 2012 at 11:31 am
• Report post

I couldn't agree more, the brain is an amazing thing, and just as people believe you can manifest the actual disease, you own your genetic predisposal. The choices you make in your life can give your genetics a healthy and positive way to manifest.
@ amc627, i myself am a carbon copy of my father, so I understand completely how you feel. At first I had a very very hard time, but the more I educated myself I was little better at accepting what is going on. I highly recommend a support group in your area. Alz.org is a great resource. I have a few other booksive read that I can recommend.

• By amc627
• Reply 3063859
• May 14, 2012 at 12:19 pm
• Report post

Thanks ladies. Yes Erin, books would be great! Mom just got back from her dr's appt and he's running a bunch of bloodwork and they're ordering a CT scan; she had one last year that looked fine, but the doctor is concerned about strokes. My mom also has always, always sucked down diet coke like it was water and he told her to quit that. He also took her off Crestor and told her to stop taking benadryl, which for some reason she was taking all the time (we didn't know). Hoping we get some sort of good news, but he does believe it is most likely younger onset Alzheimer's.

• By SheriMarie
• Reply 3187667
• July 5, 2012 at 4:30 pm
• Report post

My husband with early onset alzheimers just diagnosed in April, 2012 had been on anticonvulsants for over 30 years which seems to be the culprit of his alzheimers. Never did I read in the small print," may cause dementia, alzheimers or other neurological damage:. Medications are causing risks of all diseases. Question: Some members have said they are having CT scans to determine or diagnosis Alz's but my husband had a lumbar puncture. We were told this was the only and best way to diagnosis. Anyone have a different report from their Dr's?

• By Erinlynn
• Reply 3188115
• July 5, 2012 at 8:32 pm
• Report post

Sheriemarie, I am very sorry for your husbands diagnosis. Always remember there are many of us going through same thing if you ever need to talk. As far as the lumbar puncture, our dr never spoke of that. He has told us the only "true" way to determine if someone has Alzheimer's is with an autopsy : ( The tests they do badically rule out everything else and then they can "diagnose" w Alzheimer's. Not sure if this helps. My fathers diagnosis seems to follow a genetic pattern. His mother was also diagnosed at the young age if 54. This leaves me frightened at times because I feel it's in my future. I can only hope & pray that medicine changes over the next 20 years til I get there.

• By oma123
• Reply 3378101
• September 15, 2012 at 4:19 pm
• Report post

Where are all these support groups? I live in Baltimore and they are few and far between. I cannot get over how we keep hearing how 1 in every 2 are going to be diagnosed with AD and yet it seems like very little is being done about it. Today as like every day was a rough day with my husband. I wished at that time I could grab someone that would help me or do something. This is a hateful nasty disease. You are supposed to sit back and just keep quiet no matter what they say or do Well, I do not know how many people can do this. He will not listen to anything I say. It just leads to upset on my part. I know it is the AD but you have to be crazy to just sit back and let these people do what they want. It makes me sad and I cry which I really try not to.I cannot stand this man anymore after being married for many.many years.I feel like leaving him. but I feel sorry for my 3 children.they would have the problem I GUESS THIS IS NORMAL THINKING They have their own families. It seems like when they visit he gives the impression everything is fine. They only see him once a week, How in the name of God can you do this for a long time? How do you all feel? I try real hard to ignore and work along, but after so many times you cannot keep doing this

• By missmyma
• Reply 3379758
• September 16, 2012 at 10:56 am
• Report post

Just a couple of thoughts....there are support groups all over, sometimes hard to find...look through this link and alz.org...maybe try googling and something in the local papers mite come up.
It sounds like you may need to get outside help and don't be afraid to tell your kids you need help!! If all of that is not working it may be time to enroll him in a out of home location? There is no right way to deal with this thankless scourge, you have to do what is right for you! It is not, unfortunately, going to get any better...godspeed