I am really finding little information and resources for early onset. I feel like I'm just starting my life. I just finished my first year teaching, I want to have a baby, need to finish my Masters, etc. I am so angry that this happened when my mom is only 56 and I'm 28. Are there others out there my age caring for a single/divorced parent?

Cody:

Sorry you are going through this. There is a lot of informtaion on EOAD. I know it is a difficult situation my husband 53 has EOAD and we have 2 kids 18 & 21 in college. My daughter took it hard for awhile. Now we try to enjoy him as much as possible & because he is in the early stage that is not difficult.

You need to live out your dreams and research information on how to help mom. Did she work? Can she get disability?/ Is she living alone? Feel free to ask questions on this board as it is a help to many.

Hi. My name is Kerri. I was amazed to read your post as my mother has FEOAD. I have NEVER met anyone else who has had to support a parent who suffers from Alzheimer's in their 20's (or 30's, for that matter).

I'm 30 now, but I've been handling my Mom's financial/legal affairs for 8 years and have been her full-time caretaker for the past year (right after earning my MA). One month ago I made the most difficult decision of my life and had to place her in an assisted living facility with a secured Memory-Care Unit. I was devastated.

I understand your being angry. I feel angry a great deal. Angry for my Mom that she cared for her mother who suffered the same fate she faces, angry that her husband was taken from her 8 years ago, angry at presidential vetoes that block more aggressive stem cell research, but most of all I am angry that I watch her slip away a little all the time and can't do anything to stop it or even slow it down. There are other, and equally debilitating, emotions that seem to vie for my attention. There is guilt over decisions I have made (like going away for graduate school when the opportunity presented itself, or, more recently, the decision to have her placed in a facility because I couldn't meet her growing physical and cognitive needs). Frustration is a big one, too. My parents were never in a position to plan financially for their futures so I fight for the benefits my Mom's entitled to pay for her care and have to supplement the rest on my own (I recently had to pass on an offer to attend a really great program for a second MA in a field that is my passion so I can work to ensure her continued care). Then there are days when I just feel overwhelming sad that my Mom has to go through this at all. There many other emotions you will feel and likely already have. This is when you must have a support system in place, whether it be a spouse, siblings, or just a great circle of friends who help keep you grounded and won't let you dwell on those overwhelming emotions.

Also, whoever posted the reply before this one was right. You must live your dreams. Must. For years this disease has been my world (and still is to a great extent). Grad school was so terribly difficult as I was attemtping to be a caretaker and acting with power of attorney from 1,500 miles away while trying to hold down a job...and I'm still glad I went. Pursuing your own goals would be something your Mom would want for you and it certainly doesn't mean you love her any less. Besides, having a Masters degree puts me in a position to get jobs that pay well enough for me to better ensure my Mom's continued quality of care.

As far as sources of information on FEOAD, my collection has growm over the years I've spent poking around on the web and hassling local doctors (my Mom's and all of the local geriatric, genetic counselors, and researchers that I could get in touch with). There is also a wonderful DVD out from PBS about Alzheimer's which highlights a family stricken with familial early onset Alzheimer's (my maternal grandmother had it, my Mom, and I have a 50/50 chance of developing it as well). The DVD is entitled, "The Forgetting: A Portrait of Alzheimer's." You can Google it or go to PBS' online store to find it. It is really informative. Also, if you are/will be the primary caregiver as the disease advances, I would recommend the DVD collection, "The Family Guide to Alzheimer's Disease." There are 5 DVD's in the set and I am still working my way through it (so far no mention on the EOAD variant of the disease). I found it at Leeza Gibbons' website when I requested a card for their touring "Memory Wall." You can Google Leeza Gibbons + Alzheimer's for more information. Most of the articles I have retrieved over the years on the early-onset form of the disease have been from medical journals. I go to websites like PubMed.gov, the JAMA website, the NIH website, and even general internet search engines. Even the AARP newsletter/bulletin has articles from time to time on the early onset variant.

I realize I have given you tons of information. I was just very excited to learn that it's not just me out there trying to figure all of this stuff out (and, of course, very sad to learn I'm not the only one). So, if it helps, you are not alone. I would be happy to email you links or copies of the information I have on FEOAD and hope that I have been of some help.

Stay strong and be good to yourself.
Kerri

Kerri,

Thanks so much for your lengthy reply. It definitely makes me feel less alone knowing that you are dealing with a similar situation. I am curious, how have you managed full-time caring for your mom and making a living? Thank you for all of the information and resources. By the way, was your mom told from the beginning that she had Alzheimer's?

Take care.

Hi Cody,

My Mom was diagnossed with "depression" at age 52. My dad had recently died and Mom started behaving most unlike herself. First diagnosis was depression; second was still depression; third was, "well, not sure, so let's do some cognitive testing." At age 56, she was still declining and consistently failing the tests with worsening scores, her primary physician said there's a good chance it's dementia. She will be 61 soon and now resides in an assisted living facility. Obviously, getting an accurate early diagnosis seems to be part of the problem, even considering that Alzheimer's (dementia) is a diagnosis of exclusion.

How did I make a living while caretaking? Had to sell Mom's house to finance caretaker services while I worked during the day (EXPENSIVE!) and then took care of Mom on my own at night and on weekends. Lost sleep, lost weight, lost some sanity along the way. I had the world's most cool boss who understood my situation ad let me take off o tend to my Mom's affairs when necessary. But a situation like that can never be indefinite (financially, emotionally, or physically), hence my decision to make the move to full-time living at her new facility.

Kerri

Cody,
Below link takes you to a national report about state of affairs in EOAD. Might want to look if you haven't already.

www.alz.org/documents/national/earlyonsetreport_full_report.pdf

I'm in the same boat as you. My mom is 59, I am 32 and I am primary caregiver. It is tough living the winter of one life and the spring of two others (my 2 year old and 4 month year old). Thank God I have them for comic relief. You aren't alone though. I wish I could give advice, I am just trying to figure this all out myself.

Hi. My dad is 49yo has dementia- NPH and FTD and I am 25yo. We are not alone and there are a growing number of us younger caregivers. My mother does not handle my father well and admits she is not a good caregiver, so I am often left with handling the stresses. Similar to you, I am worried about what my future holds for me. I hate thinking that this is my life- I have a parent who will be living with me within the near future. I encourage you to contact your local chapter. I am in continuous contact with my chapter and find them to offer wonderful support and guidance.

Hi, my name is Kelsi. I'm 21 years old, and my mom was diagnosed in February with early onset Alz at the age of 45. My stepdad is the primary care partner, but I am home from college for the summer so I have been trying to help out however possible. I applaud all of you who have posted thus far; the strength and resilience it must take for you to be primary care partners is tremendous. I thank God every day for my stepdad and the love he has for my mom and me. I don't know where we would be without him.

I have started a blog as a way to cope with everything that is going on as my mom's symptoms are becoming more visible. My experiences are spelled out in much detail there, and I would love for any of you to check it out. Knowing we're not alone can make even the hardest situations a little more bearable, especially when it's so hard for people to understand who haven't dealt with the disease. The web address is:
www.elementofblank.blogspot.com

May you find a reason to smile today.

There are indeed more young caregivers than expected! I'm 28 and caring for my grandmother. Hers is not early onset, but I'm still in a unique situation because I'm a grandson in his 20's caring for her.

Our lives have to change and adapt to the situation, but I believe that is true of every relationship we're in. In the earlier stages I think it's very possible to pursue our own lives without sacrificing them or our quality of care. At some point they will become mutually exclusive, but thankfully I'm not to that point yet.

It's too bad we're so spread out! It would me nice to meet. Oh well...

Hi

I am new to the boards and I am so glad I found them! I am 33 and my mother is 64 and has AD and emphysema. I am her only caregiver as I have no siblings and my mother does not want additional help. It has been a difficult year and I can see her failing quickly. I feel I have put my life on hold to care for her and sometimes I feel bitter about it....but I know I really wouldn't have it any other way. I know its exhausting and drainnig but stay strong as you are not alone.

Marie

Hi - just wanted to add another voice to the community of young adults who are caring for loved ones with dementia-

I am 26 and the sole, long-distance caregiver to BOTH my mother (age 50) and grandmother (76) who live together and both suffer from severe, but slightly different, forms of dementia (Mom still not diagnosed fully, but testing leaning toward FTD or EOAD).

Mom and Grandma live in TN - managing to get by due to the generocity of neighbors - but their needs are really not being met. Finances are astray, house is filthy, diets are poor, medications are not administered, hygene for Mom is poor.

I'm currently home to help take care of some stuff, but soon I have to go back to WA knowing that there is SO MUCH more to be done.

I know I need to find long-term care for both of them - soon! I'm afraid of seperating them - both would be devastated - but we do not have financial resources for in-home care and finding a care facility for both of them that accepts Medicaid & people under 60 - seems daunting (though I will do my best!).

Meanwhile, I have my own life (or I did...) and want to go to graduate school and continue my relationships and career in the Pacific Northwest. I may try to find placements for them in WA - so I can see them and monitor their care - but I have no idea how to facilitate the big move - secure placement, sell the house, get rid of all their belongings, etc. Not to mention dragging them into a vehicle and driving them 1,800 miles or so (anyone have spare straitjackets?)

As the newly appointed power of attorney for both of them, I feel so responsible, but I also feel like I'm betraying them by moving them away from their "comfort zone".

Anyhow, those are some of the issues swirling around right now.

Thanks for listening & I wish you strength in your own journey.

I'm 34 and just put my mom in an assisted living facility. My daughter is about 18 months old. This is extremely difficult and I feel very isolated because I am young compared to most caregivers. I noticed while reading this that Kerri lives in Austin, TX. I do, too and would love to talk to you if are interested. Please let me know and I'll post my email. I'm so glad to see this post. I'm not glad for what you all are going through but it's reassuring to know that others live through this.

I'm also new to this forum and I was in the same position. My dad was diagnosed at age 59 and now 6 years later he is gone. He was diagnosed when I was 15. It has been the most difficult experience of my life watching my dad deteriorate so fast, he passed away on September 7,2007. My parents were divorced but when my dad was diagnosed he moved back in with us and my mother and I were his primary caregivers. I can relate to what everyone is going through it is extremely difficult to deal with and if you need someone to talk to I'm here.

I can relate to everyone on here. I am 27 and just put my 60 year old mother in a nursing home today. She was diagnosed about 10 years ago and her condition worsen quickly. She is in the last stage of the disease and it just got too much on my father and I. I'm having a difficult time dealing with the fact that she isn't home and I feel guilty because I feel like I have given up on her. She is so young and I feel like I have been robbed of my mother. She doesn't even know who we are anymore. It's such a terrible disease and it affects everyone that she loves.

I too am 28yrs old and my mother is 53 and has recently been diagnosed. I can understand what everyone here is going through. This whole things is very confusing. I have a husband who is a full time Nursing Student, a 4yr old daughter, and a full time job. Luckily my mother has a husband which she has only recently married but has been with for 16yrs. I don't know what I would do without him. I can't imagine what he is going through having to be with and watch her daily. However he too works full time. My mother is in the very early stages but is going through a bout of depression and poor me state of mind right now. It is honestly enough to suck the life right out of me. There seems to be nothing any of us can say to cheer her up. She saw a specialist about 2 hrs away from our home town last week and got positive news. The doctor tells her that in her current condition, with proper medication, positive mind set, and good social interaction she can stay in this same stage for 7-9 yrs. My step dad and myself found this very uplifting because we thought she would get bad in just a couple of years and then die within 7 or so based on all of the statistics you read on the net. The doctor also talked about getting her stable on razadyne (sp) so that she could become involved in a study of a different type of medication that slows the progression of Alz. She seemed happy the day of the appointment but since has been very depressed. She admits she is feeling sorry for herself. Who wouldn't. But she has got to snap out of it at some point or she is only causing herself to decline faster. We just don't know what to do. Its one thing to spend time trying to cheer someone up and getting somewhere, it is completely different to give of yourself and get nothing in return. It leaves me emotionally bankrupt and then that burdon goes to my husband who is already overworked being a full time student. I guess I just thought I would be able to handle this better than I am. I feel like the doctor gave the family a job, which is to make sure her psychological and social needs are being met just right, and that we are all failing misserably. I don't like to fail so this is very hard on me. I just don't know what to do.
Thanks for listening

Hi everyone! I'm an old lady compared to all of you, but when I first started suspecting my father had dementia I was still in my early 30's. I felt really angry and scared. How could this be happening NOW? It's too soon! But I hate to say, it seems a lot more prevalent than what everyone thinks - or used to think. I haven't married or had kids yet, I hope someday I can, but right now, I'm just taking things one day at a time, getting it all together as best I can, and taking a good look at what's really important right now. I have tremendous respect for anyone who has children and parents to take care of. I can say that after a year or so, the anger subsides and it becomes a real case of what do I need to do to keep things as normal and safe for my parent as possible. The balance is always shifting, but it can be done. And Larissa, you're right about doctors shifting it all of us "non-professionals". It's frustrating and discouraging. Just do the best you possibly can. Hang in there. And please keep posting, it helps us all to know we aren't alone in this, even when others turn their backs or run away. Take care!

Wow...Kuddos...to everyone that has posted on here.My heart is overwhelmed, but after reading everyones postings, I feel thankful that I am not alone. I was 27 when my mom was diagnosed. I work full time and have a very great and understanding husband and a beautiful 19 month old daughter. I have had to tend with my father for my moms affairs for 11 years now. My junior year of high school she was diagnosed with Multiple Scrosis. Now I am technically the sole caregiver due to my moms personality chnages and that has really complicated my parents relationship where she does NOT want my father involved. She is unaware or doesn't want to believe that he does care for her and love her, he keeps me strong and is my "sounding board." It took me a year or two to get her diagnosed. The doctor didn't think she had because of her age...but I kept insisting until on a visit on one of the "bad days" he was able to see it also.

Now I keep a journal of the things that occur and call the doctor every so often to keep him posted and sometimes we have to schedule additional appointments.

My mom is an amazing woman who has not accepted the disease. It makes things very hard for me. I have tried reading up on information where they say "blame the disease, not the person". Well, tried that and because she still hasn't accpeted it, my cell phone got thrown out the window going 70mph. It is amazing how this disease has some many instances that change day to day. I literally dont know what to expect each day. But, I tell you I LOVE those days when she is having a "great day" and tells me how well I am bringing my daughter up, or gives me a hug, or just a simple I LOVE YOU...granted those days a very far and between but I do CHERISH IT...

Currently, my mom is on Aricept. She was doing really great for the past nine months but I have seen a little decline. I had to call for another visit because of the decline I was seeing. He has now order a pysh evaluation and because she is aware and still able to drive this evaluation has upset her. It upsets me too but I have to be the strong one.

I too have put my life on hold and often times my own family. I am thankful my friends often have a "ride at 55 mph with the doors locked" to remind me to take a breath, relax, and spend time with my family.

I have often felt angry and I trully believe that it is because I am still in shock. My mom gets very verbially abusive which is way out of chartacter for her and that is what upsets me. She was never ugly, mean, negative, or used foul language, but now I have a 65 year old sailor on my hands. Then, my guilt settles in because she will call and ask my why she is acting the way she is and if I try to explain she still doesn't understand and I feel like maybe my communication skills aren't good...or maybe I should have done this or that and start to over analyze everything...but I know I am trying to make the best decisions that she would do because she is the one that taught me my morals, values, and how to care and respect people.

I just joined last night and I wish I had done this earlier...thanks everyone...It brings a tear to my eye knowing that I aint alone on this road...Thanks and Kuddos

Hi! My dad had dementia from the time I was about 11 until he died when I was 26. I am now in my (ah - hem) mid thirties and my mom has AD. I feel so sad that so many young people are dealing with this awful disease, but at the same time very proud of all of you who are being so strong and showing such compassion to your loved ones.

Lori K

Hi. Im 32 and my mom is 60. She was diagnosed about 1 year ago. My father is suffering from depression as a result and is a horrible caregiver. I moved back into my parents' home and take care of her now. I am not married and don't have children. I also at times feel bitter because I had just started my career, life, etc.....and then this! None of you guys are alone and I applaud everyone here!