Hi everyone! My mother, who is 54, has been diagnosed this past week with Alz. She is in denial most days. She just moved to Florida to stay with my sister until we can figure out what to do and that's just it - What do we do? Where do we start? Where should she live? The Doctor & social worker said she cannot live alone. I feel so badly for her and for our families. I don't like feeling like this - out of control and overwhelmed.

Thanks for reading and any intial advice is much appreciated

concordjake,

My dad was 55 when he was diagnosed. It is so difficult when they are so young. There are so many people facing these difficult situations and you will hopefully find some help on this board. Most people read posts on the caregiver's forum, and I would recommend reposting this there. You will get a lot more responses.

I don't have advice, except to say that you and your family are not alone. There are options and I would encourage you to explore all of them and ask for help and support along the way. My family could not have gotten through this without tons of help and support from others and each other.

Keep us updated...

Jake-I suggest you read up on Alzheimer disease. Check out the alz.org webpage. There are sections covering the various legal, and medical aspects. The more you know, the more prepared you are. Also, try reposting on the caregivers forum--it is much more active, and you will find many people with experiences like yours. There is a way to move the post, but I haven't figured it out yet.

Welcome, though I am sorry you have to be here. I am a secondary caregiver to my mom, who has EOAD and is currently 61 yrs old and in stage 6. She lives with my dad and he provides her with adequate care, but it is taking a huge toll on him. A couple of thoughts for you, in no particular order:
1. See if she is eligible for Social Security Disability. If she's been officially diagnosed, you should not have a problem. That will help offset some of the financial burden.
2. Look into alternative care options now. Before your sister gets burned out. Caring for someone with AD is exhausting and thankless most of the time, so having access to adult daycare or respite care will be a huge help. If your sister works, it will be absolutely necessary.
3. Go to the caregivers forum, it gets more traffic and you will see there are a lot of other people in similar circumstances, unfortunately.
Good luck.

Thank you everyone!

I have you all in my prayers

Jake,
Whenever I read your words - "I don't like feeling like this - out of control and overwhelmed" - my heart went out to you. I know those feelings all too well. My mom was diagnosed this year at the age of 45. I hardly knew emotions could be so intense. I can't offer much help in practical matters as my stepdad has dealt with all of that for my mom, but I do have some advice for you personally.

I encourage you to focus on what you do have control over: loving your mom and supporting your family. I have found that sometimes my instinct is to withdraw b/c it's just so hard to deal with, but you all need each other now more than ever. As far as feeling overwhelmed, follow others' advice on this thread by doing research. Being knowledgable can take away some of the unknowns, which eases feelings of being overwhelmed. And as horribly difficult as it is, try to take each day one at a time.

I promise you that now and in the coming days you will be amazed to find strength you didn't know you had.

www.elementofblank.blogspot.com

concordjake,

I'm sorry to hear about your mom's diagnosis.
My husband, 51, was just diagnosed. I feel like you do - overwhelmed and out of control.

The one piece of advice that I was given that actually has been excellent, was to keep a 3-ring binder of dr visits, phone calls made, copies of EVERYTHING. It has really been helpful to have everything I need in one place.

One day at a time....and a deep breath.

Hugs to you!

Like several of you, my mother has EOAD and was diagnosed last year at age 57. I have tried to do some research into the topic and am finding it difficult to get good information of the different stages. From what I have gathered, she is in mild to moderate category. Do any of you have links to great information that is not a pharm companies ploy to get you to use their drugs? Also, the first drug they tried, Aricept, made her very sick. Any suggestions as to what other drugs may be beneficial? I am beginning to think these drugs are aimed at AD baby boomers who have the means to purchase these drugs and they may be useless in the short or long term. Any advice and practical experience from caregivers is appreciated.

quote:

Originally posted by unagrad:
Like several of you, my mother has EOAD and was diagnosed last year at age 57. I have tried to do some research into the topic and am finding it difficult to get good information of the different stages. From what I have gathered, she is in mild to moderate category. Do any of you have links to great information that is not a pharm companies ploy to get you to use their drugs? Also, the first drug they tried, Aricept, made her very sick. Any suggestions as to what other drugs may be beneficial? I am beginning to think these drugs are aimed at AD baby boomers who have the means to purchase these drugs and they may be useless in the short or long term. Any advice and practical experience from caregivers is appreciated.

Unagrad, I am not a caregiver but rather a patient, hopefully I can still give you some advice from our experience.

As for the Stages, you can read those out of any book and off of any site and they will be bascially the same. Each person is different in the stages of the disease, especially us babyboomers. We may show symptoms of many of the stages at the same time, really depending on the day we are having or even the time of day.

As for the medications, I was allergic to Reminyl also know as Razadyne but many do well on it. Then there is Exelon, one I did well on for over 3 years before having to change to Aricept. Namenda is the "booster" so to speak that goes with these meds so please be sure to ask your doctor if she isn't on it already. Just as the stages, we all react differently to the meds. No one person will be the same. The drugs are more benegit to the patient in the EARLY stages than the late stages. That is why getting on them when diagnosed early is so important.

What actually causes this disease? Can it be prevented? No where in our family does anyone have EOAD except my 44 year old sister. Will I get it also?

Darkepoetess -- There is no known cause for AD. And, there is no known cure. I was diagnosed at the age of 46 and no one in my family has the disease either.....or at least we know of. There is no way of knowing whether you will get this disease or not. I know it is frustrating, but try to find out all you can about it and ask lots of questions. It will help you understand a little better.

Kris B.
www.creatingmemories.blogspot.com

concordjake.... I was about your mother's age when I was diagnosed.I too went into denial for a while.a long while.

And if you don't like feeling like this- out of control and overwhelmed, then just imagine how we feel..... it is just like that scene from Fried Green Tomatoes where Mrs. Threadgood goes home after living in the NH with her friend. She is sitting in the road on her little suitcase looking at where her home use to be........(Dang I hate when stuff flies out of my mind-)-- well the other character's name face and everything is gone but I will try to get my point to you......Mrs. Threadgood says. " Evelen, ( after a mere 5 minutes it came back lol) Somebody stole my house, now why would anybody want to steal an old woman's house?" Jake, that is how we feel........

My hubby and I use as much humor as we possibly can to handle this nightmare.

One thing my family doesn't do is smother me with " O' wo is poor Mama." They allow me to be as independent as I can and to do as much for myself as I can do. I like it that way. Taking baby steps helps me a lot... no big moves or sudden changes .....calmness.....and giving me space to try to accept this in my own mind. So far they have gone on about their lives and we have all tried to keep everything on an even keel.

I have my good days and then I have some nightmare days.... these last two days, I have been present and in the now....It feels great to be home.

Jake, take baby step. And take a deep breath!!!!

Be Blessed,

Carolyn

Jake,

I'm so sorry. I don't know if it helps you, but it helps me to know I am not alone. My mother, who is 56, was diagnosed in June. So far I have found that there is much to learn, but really there are no easy answers for what to do. I feel like I am being asked to make decisions I am completely unqualified to make. Sure, there are social workers and others to help, but ultimately she's your mother and you know her better than her doctors or the social workers. No one has ever said "this is what you should do" to me. (Although I sometimes I have wished they would.)

At this point I don't have much advice to give. I have held on to the idea of living in the present and enjoying my mom's company instead of worrying about what is going to happen. But, I've also remembered the quote, "Expect the best, but prepare for the worst." (some Alz. book) OK, I thought of a little advice. Don't put your life on hold and be sure you have a strong social support network. Having great friends certainly helped me get through these last 3 months.

scodys@yahoo.com