My mom was diagnosed with early onset when I was 13, and she was 50. I'm now 27 and I was so happy to see this discussion board started. A support group or discussion board really would have helped my siblings and I to feel less alone. At the time we didn't know that young people could develop dementia, and it was very difficult to explain to peers what was going on at home. I'd be happy to talk to any children who currently have a parent with early onset.

Hi Kelly!

I'm 30 and my dad was diagnosed with early onset about 5 years ago, around age 60. I can't even imagine how difficult going through this was when you were only 13 and there was much less understanding of the disease than there is now. How are things with your mom now?

My family and I are finding that dealing with this disease is so much more complicated than we ever imagined. A man with the stregnth and legal rights of an adult, who appears to strangers to be healthy and fully functional, but has the reasoning ability of an adolescent and very little short-term memory - it makes for difficult issues. For instance, he's had a few minor surgeries over the past few years, but when it comes to taking the medication he's supposed to or not performing strenuous tasks, my mom is not always able to get him to do it. He feels fine, so he mows the lawn even though he just had hernia surgery. People who haven't had to deal with this on a daily basis don't get it - why can't my mom make him take his meds and get some rest. But we know you can't make a man who's bigger and stronger than you do anything, and sometimes it's better just to prevent the explosive situations that arise when he feels threatened or confronted. Ugh!

And now we're realizing that he may have a secret relationship - but that's another story for another day.

But when we're not dealing with those things, he's just my dad and I love him dearly.

Sorry so long - my first ability to really vent! Maybe you (or some other children of EOA patients out there) have dealt with similarly complex issues?

wow, i really thought i would be the youngest here but i guess not. well not YOUNGEST but age when first dealing with AD. my dad recently lost his job and they believe it's EOAD. my uncle likely has it as well. it's rough because i know it's hereditary. my grandmother died of EOAD. i sometimes feel like they've forgotten her...makes me really sad. i don't want anyone to forget my uncle or my dad. my uncle is definitely worse off...has been for a long time now. he doesn't really talk much these days. just sits there in a daze. breaks my heart. my dad, i've noticed is getting more and more quiet these days. i couldn't figure out why it was so hard to talk to him everytime i come home from college...but i guess it is making a lot of sense. i think he's falling into a depression about everything. he's still really great and is normal right now...what i mean is we caught it (if anything) VERY early on.

i feel lost. a part of me had all of this positive strength when i found out they're so close to finding a cure. (might i add that every year we give money to charity and ironically enough i said to myself "i NEED to give it to AD research, just have to")

and i really am happy about that...but now i read all of these comments about medication only "slowing" not reversing the process. i thought there were some meds that reverse it. can EOAD be reversed? i really hope so. because if that's the case i can take a break from this petty crying and enjoy every second of life.

Emily -- right now there are not any drugs out there that can "reverse" EOAD. But, the drugs are getting better to help slow things down. There are several that are in late stage clinical trials now that are promising for symptoms. The Georgia Alzheimer's office www.alzga.org has some information on these drugs and you can call for some more information as well.

I too have a son in college and hope that when he is at the "early onset" age that there will be a cure -- we can only hope. And, it is important to stress that money is needed for research.

Some doctors now are hoping that those with EOAD can be treated with drugs and lead somewhat of a normal life and die from something else.

Kris B. Athens, Georgia

My mother was just diagnosed with Early onset Alzneimers. I keep hearing everyone talk about Familial Alzheimer’s Disease (FAD)is all early onset Alzheimer's FAD or can it just be a fluke.

Hi,
I'm not sure if familial Alzheimer's Disease (FAD)is all early onset Alzheimer's. I would ask a neurologist or look in the research. I will ask some of my contacts and let you know!
Kelly

My mom is 64 and has had AD for about 12 years; I am 32. We are at end stage now.

I can't describe what it's been like to watch my mother go thru this horrible disease. She is a very brave woman.

She is now on hospice.

My Mom had early onset Alzheimers and I worry that I might get it. I think about it everyday. My Mom and I are so much alike. I've never had a good memory and have trouble learning. Now every time I can't remember something or have trouble learning I think I might be coming down with this horrible disease. And I heard with early onset it could be genic.

My mom was just found out that she is in the EARLY STAGES OF ALZHEIMERS OCT 15TH,She is still in the hospital,Because she has been falling,And they started her on the medicine and she is alot better today Oct 16th than she was last week

Hi,
Sorry its taken me so long to get back to you. My Mom actually passed away a little over five years ago. She lived with the disease for ten years since her diagnosis. There were times when we didn't know what to do and where we felt lost and isolated as a family. I think humor got us through a lot of the hard times. We also got very involved in the Memory Walk through the Alzheimer's Association and every year our team has gotten bigger. I feel it is a good way to honor the memory of my Mom and to give back to other families who are fighting this terrible disease. In regards to behavioral issues the Alzheimer's Association has a great library and resources. We were lucky enough to be able to keep my Mom at home, but we did eventually get some help in the home so that we could take a break if we needed it. Do you have any help?

Kelly

Hello,

I know it's a scary thing to be faced with, and it's hard not to think about it everyday. I too find myself forgetting things and then questioning myself. What has helped is learning more about the disease and way's to help. Here is a link on the alzheimer's association webpage that you can go to http://www.alz.org/resources/factsheets.asp and look for early onset fact sheet. I also think talking about it with others helps.

Kelly

Hi Snoopy,
Sorry to hear about your Mom. How are you doing?
Kelly

Regarding Familial AD: It basicly means that there are distorted genes that cause the AD. This is rare considering all the cases, but when there are these distorted genes then each person in the next generation has a 50% chance of also having EOAD.

Not all EOAD are Familial. The other term that is used sometimes is Sparodic. That simply means no one currently knows what causes that incident of EOAD but it is not caused by the Familial AD distorted genes.

Hope that helps some. We researched this when my wife was diagnosed with EOAD beginning at age 54. I found it comforting that it did not mean automatically that our children were high risk.

Blessings and Peace,
Bill

My father was diagnosed with EOAD at 56 just about a year ago. (Ironically on the 1 year anniversary of my mom's death.) Since I'm the only one here to take care of him (brother lives in WA), I'm feeling very alone in this whole process. I would love to talk to someone who is has gone through this or is going through this. I'm just getting ready to have to take his license away. How do I be the good daughter without being the evil daughter who is taking his last bit of independence away?!?


Thanks, this is my first time actually talking to someone about this.

When my husband was diagnosed, we "donated" his car. There are Boys and Girls clubs and other agencies that accept cars as donations to help people make a new start. My husband felt good about donating his car to help someone, instead of getting himself upset about the loss of his independance.

There is no way my father would "donate" his car. At least not right now, considering that he just bought it a year ago. He prides his car so much and is already living at an assisted living facility, so he really doesn't need it at all. Can't do the "disabling" of the car either, he'll call Triple A and have it towed someplace to have it fixed. His memory is slipping...but boy, the issues around his car are very clear!!

HI My name is Jonathan and my father was diagnosed in 1982 with Alzheimer’s. He was 50, I was 20. This was long before web sites and chat rooms and support groups. He passed away in 1994 after a very long battle. I am just now beginning to heal some the scars that I have been dealing with since his illness was diagnosed. As I am actor and playwright I wrote a play about early onset over 10 years ago and am now is the process of getting it produced as a film.
To those dealing with the disease on a daily basis, get help and support. And know that you are not alone.

Jonathan

Jonathan -- thank you for your comments and your work. What is the name of your play? As an EOAD person I know this will help our children come to grips with what they have to deal with. Thank you for sharing.

Kris B. Athens, GA

Hi everyone,
I'm just now posting after reading through a lot of the messages. My father was diagnosed at the age of 54 when I was 19. I'm 23 now and we've been dealing with the disease as best we can. My mother has taken caretaking duties which is stressful for her. I wish that I could be closer but I've found a job three hours away and know that I won't be able to find something that would bring in money to help offset future living costs. My mother can't work because she's taking care of my father full time.
We had to take away his car in April and it was a very difficult time. It was the first time that I really saw how devestated Dad was. We sold the car to friends of my uncle's and I'm still not sure we handled it as well as we could. One thing that was suggested in a support group I was in was to put the car in terms of cost. Tell him that you just can't afford to keep the car and think that selling the car would be a reasonable thing to do to help with the budget. It's never going to be easy, especially with EOAD people. They know what's being taken away from them and they can vocalize it.
If anyone ever wants to talk, feel free to email me at kathrynelspeth@gmail.com I'll try and check the boards. I'm so happy to see that they have been established and I too wish they had existed when my brother and I began this journey. I've been trying to write a book about our experiences in hopes of getting more resources for young adults out there but I'm glad to see that more and more people are acknowledging that this form of the disease is different from AD.

HI,
My play is called "Stay Human" and it was written about 10 years ago and before my father passed away. It deals with a young man who removes his father from a nursing home to try and have a conversation with him before he dies. however, the father is in the final stages and can not speak. But they communicate on a much higher level. I have given the play to several friends/co-workers and people with knowledge of the disease. They have encouraged me to get it produced so I am in the process of putting a budget together to film it.

I find the support and communication on the site here amazing. I never have seen such honesty and sharing. Thank you all for your participation and support.

Jonathan

quote:

Originally posted by Kris B.:
Jonathan -- thank you for your comments and your work. What is the name of your play?

Kris B. Athens, GA

Dear Kathryn,
I noticed that you are dealing with the same situation that I was. My father was diagnosed at 50 while I was 20. It was very difficult for me as I was in college and trying my best to get through the very difficult situation of growing into adulthood while faced with something so terminal as AD in my family. Not many friends could relate, but you have an amzing resource in this forum. There are so many people that understand exactly what you are going through, you never have to feel alone in what you are going through.
Best to you and I look forward to hearing more and sharing more about this journey.

Jonathan


I'm just now posting after reading through a lot of the messages. My father was diagnosed at the age of 54 when I was 19. I'm 23 now

Dear Jonathan- I would love to get inside the mind of my loved one with EOAD, just for a day.......maybe they are communicating with us, just in another way, I think next time I rush past my Mother, instead I will hold her hand and encourage her to just be, not talk or ask for a quick answer but to just BE.....maybe with Gods grace, I will understand her without even speaking...Good Luch with the "STAY HUMAN" play, thx Friend.............ZOEY M


"ENCOURAGE ONE ANOTHER, WHILE IT IS STILL TODAY"
says Jesus

Hi LVK,
I remember when my Dad had to take my Mom's keys away from her. I was a freshman in high school and I was driving with my mom, when she almost went off the road trying to exit off of the highway. I had to come home and tell my Dad how scared I was to drive with my Mom. My Dad said throughout the ten years of my Mom's illness that was one of the hardest things he had to do. At the time she was able to understand why, but was still very upset. In our case I think it was good that my Dad talked to her about it. Do you have any help?

Hey Zoey,
Some of my fondest memories spent with my Mom, especially during the later stages of the disease when she couldn't talk, was just sitting with her. I found that touch was a good way to connect with her. I use to rub lotion on her hands and feet and just sit and talk to her. It was a good way to just "be" together and enjoy each other's company. I loved those moments.
Kelly

Hi,
Just stumbled across this topic and thought, wow...theres other people out there going through this too.
My dad was diagnosed with EOAD 4 years ago, when I was 28. He's now in the mid-stages.
He lives in another state, and I feel helpless. My mom (his ex-wife) and my brother live with him and do the best they can, they work full time and don't see him much. Basically, he sits in a chair and watches TV all day. He doesn't go out or socialize at all. I am pursuing getting him into Adult Day Care for a few months, and eventually move him into an Assisted Living Home out here in CA. I feel very frustrated. Theres much resistance from my mom and brother, they complain about the situation but resist my suggestions and help. I don't understand it. I want to help, but whenever I try, they get very defensive and argumentative. I know that is is very hard on them and I'm only doing my best to try to allieve everyones stress.
My husband is very supportive and I don't know how I could do it without him.
Anyway, sorry about the extended vent session...I just needed to get it off my chest.

Klingster,
I'm sorry to hear about your situation. I live a few hours away from my parents and what I have discovered is that sometimes the people who are closest to the situation (i.e. your mother and brother) don't see the situation for what it is. My father too sits at home because he didn't have many friends before he was diagnosed but he at least has my mother who stays with him full time. One idea is to get him working on a charity project. Someone in my support group talked about giving unsanded blocks of wood to the Alzheimer's patient. He can sand them down and make them smooth for local school. That will give him something to work on and still contribute. He could go with your mother or brother to the school and give the blocks to a class. That would get him out of the house and give him something to do.
Since your mother and brother are out of the house often, what about bringing in someone to sit with him for a few hours each week? That way he could socialize and be looked after.
I wish you all the luck and feel free to vent at any time.

I am so touched by all the young people dealing with this disease. My husband just passed away on Nov 5, 2006, he was 44 and he had EOAD, only diagnosed a little over a year ago. He had the familial genetic form of EOAD, it runs in his family. I just want to encourage all of you, I know how hard it is to accept this disease and to deal with it. There are so many wonderful positive posts here about just spending quality time together, how I wish I still had my husband just to be with him no matter what his mental status was. So enjoy these precious loved ones while you can, love them well. I am so glad to see a special group on the board for EOAD, it certainly has it's own set of difficult issues.
Mary

I was twelve when my father was diagnosed with early onset -- but, they predicted he had had it for years, since he was in a later stage than we though... so I was probably around eight when he first started getting symptoms. It was really difficult for me, because I felt completely alone. Most people who have parents with early onset are adults ... sometimes the same age as my mother! I was terrified that I was the only person my age going through this. I soon realised that I wasn't -- there were others out there, although rare.

It brought me great comfort to read your post, KellyTJU ... It's nice to know that you aren't the only one.

Hi Garnet62,
You're the first person I've talked to who was young like me when my Mom was diagnosed. My Mom passed away five years ago, but it's still hard. Although talking to others and participating in the memory walk helps. The most difficult thing for me is trying to remember my Mom before she was diagnosed with dementia. It angers me that I can't remember her and I feel guilty about it. I know I was young and that dealing with the disease is very overwhelming, but still I wish I was left wtih some memories of my own and not just the ones I see on our home movies. Thank you for responding to me. Again, it always helps to speak to others.
Kelly

MaryKF

I am so sorry to hear about your husband. I dread the day that I will be in your position and I savor EVERY moment that I have with my husband.

Our lives are very similar. My husband was diagnosed at the age of 36, he is now 41 and I'm happy to say still at home with me and my children (ages 13 and 15). His brother just passed from the disease last month at the age of 44 (he was only diagnosed 3 years ago) and their mom passed from it back in 1992 at the age of 52 (she was 45 when diagnosed).

I have become quite an advocate for awareness and raising funds to help find a cure, so I know in my heart I have done all I could to make sure my children do not suffer the same fate as my husband.

Your words are so heartfelt and I hope that all the readers understand how important it is to love and appreciate our loved ones every day, no matter what their "awareness" is. I wish you and your family strength as you cope with your loss. You know your husband will always be with you and I'm sure he knew all that you did for him while he was here.

Stay strong and God Bless you-
Karen

It's amazing to see how much of a bond we, as adult children with parents who have Early Onset Alzheimer's Disease, have. I have been working with my local chapter of the Alzheimer's Association to develop a support group for adult children of EOAD loved ones in our age group (I am 35). I have attended other support groups, and found that although we are all there because we have loved ones with Alzheimer's Disease, we have completely different issues that we are dealing with.

I do hope that this topic continues to be one that is posted on. I think it's important to develop these bonds and potentially develop some friendships with people who know what the other person is really, truly going through.

meangie@aol.comHi all,
This is my first time on this site. After reading many of the previous messages posted I now realize I'm not alone. My Mom was diagnosed EOAD in 2004 at age 53. After 2 1/2 years my Mom has lost nearly all of her ability to communicate in an understandable dialect. This has been hard for her since she was a teacher's aide for many years. I try to encourage her to find the right words and to not give up when she is trying to speak, but I am slowly seeing her shy away from our conversations. She recently had another set back when she experienced a Bells Palsy episode. So now half of her face is paralyzed. She is rapidly losing weight and she has begun needing care at night because she is like a scared child,(my Dad still works a nightshift full time job away from home.) I have 2 siblings, ages 23, 31 and I am 35. We all have children and spouses of our own and live at least an hour away from our parents. The exhausting nights are starting to take its toll on us. We can't afford a caretaker so it is up to us kids to care for Mom. We are eagerly waiting for our January 31st court date to hopefully get her some disability income. It's amazing how our whole world revolves around this disease. I pray each day that the Lord will give me strength as I watch my Mom fade away...

Hi,
I too am new to this board. My mother was diagnosed in June and I don't think that I have been able to really accept it yet. It seemed to have leveled off for a while, but now again it is getting worse. She was 56 when she was diagnosed and I am 31. She doesn't seem to know she has AD. IShe was in the office of the neurologist when he diagnosed it, but after that she calls it her "short term memory problem". It is really frustrating because I want her to realize how little time she has with us or to do things that she has always wanted to do. Does it make any sense to reiterate to her that it is AD or should I just let her go on thinking as she does? She has never seemed upset or depressed, I think it is because she doesn't comprehend the diagnosis. There is so much I am confused about and have so many questions. Did anyone get genetic testing when their parent was diagnosed? I am obviously concerned about the results.

Hi Kiki, I read your post and really don't think its a good idea to reiterate the fact that she has AD to your mother. If she is not comprehending what the neurologist said or is calling it her "short term memory problem" you will probably end up repeating it to her constantly and only end up frustrated because she either does not comprehend or doesn't want to accept the diagnosis. My grandmother died of complications of AD and my mother was diagnosed in 2002, she currently lives with me. I personally do not want to get any genetic tests done because there is nothing that can be done if I do carry the gene that might predispose Alzheimers. What I have done is made all the health care arrangements I feel necessary so if I am diagnosed my children do not have to make decisions that I have had to make. I have written them all (I have 5) letters explaining my wishes and the fact that I absolutely want to go to an Alzheimers unit and not live with any of them. I know this is not a popular decision and we all want to take care of our loved ones (me included) at home but that is my choice. Keep strong and keep posting, this is a great support site.

quote:

Originally posted by klingster:
Hi,
Just stumbled across this topic and thought, wow...theres other people out there going through this too.
My dad was diagnosed with EOAD 4 years ago, when I was 28. He's now in the mid-stages.
He lives in another state, and I feel helpless. My mom (his ex-wife) and my brother live with him and do the best they can, they work full time and don't see him much. Basically, he sits in a chair and watches TV all day. He doesn't go out or socialize at all. I am pursuing getting him into Adult Day Care for a few months, and eventually move him into an Assisted Living Home out here in CA. I feel very frustrated. Theres much resistance from my mom and brother, they complain about the situation but resist my suggestions and help. I don't understand it. I want to help, but whenever I try, they get very defensive and argumentative. I know that is is very hard on them and I'm only doing my best to try to allieve everyones stress.
My husband is very supportive and I don't know how I could do it without him.
Anyway, sorry about the extended vent session...I just needed to get it off my chest.

i know just how you feel. my case is my mother in law though. i have tried everything to help and releive the pressure off of the daughter. we were spending everyother weekend over there and i was watching her during the week 2 days. then my sister in law says i dont need you any more and now she is mad we dont help more.

it just makes you head spin. my mil was told she had alz about 6 years ago. but i noticed a differece in her 9 years ago. then she was only 61 now she is 70. she is still doing good. she remembers a lot and walks and stuff.

the first sign i noticed was we saw her at the store and my kids wanted to go home with gram so we let the girls go the boy was only 6 months old. when we picked up the girls some hours later i was telling the girls what their brother was doing and gram said well what did the girls do that whole time.

i told her you had gram. she said i did. need less to say no more babysitting.

My dad is 58 and was diagnosed with EOAD two years ago. He is very aware & very frustrated of what the disease is doing to him. He has had an overall positive attitude, and has been determined to enjoy the good years he has left. In the past couple of months, his behavior has been increasingly erratic. I haven't sought a support group for myself because I live a few hours a way, and I am not his primary caregiver. Not to say the disease isn't affecting me. Oh, it does. I've been witness to a few of these erratic episodes in the past months. But what led me to finally post here & seek some support (i.e. get out of denial-land) is that he pushed my step-mother down the garage steps last night & pulled a knife on my step-brother. He has been having rages once a week, and rants more often than that. And that's just what I know about. After the incident, he was found lying down outside & then started acting like nothing had happened. He is in the hospital now. I don't know what's coming next. Where do we go from here? What can I do? Sometimes he is so much his old self that you can forget about the disease. I am in my thirties, and have found it to be the best/ worst time. I'm raising my children and experiencing life through them...while seeing my dad experience this horrible disease. I'm glad you all are here.

Hi All,
I just came across this board. Part of me is glad to see that others are in my situation, but the other part of me feels terrible that anyone would have to go through this. My mother was diagnosed with early onset when I was 16 and she was 39. I am an only child and my mother was divorced. At the time, it was just her and me. Needless to say, that was the worst time of my life. I am now 30 and my mother is still hanging on. The disease progressed very quickly. By the time she was 43 (4 years after being diagnosed), she was in a completely comotose state (not sure if I spelled that correctly). She has been that way ever since. I didn't think of it much when I was in my 20's. Now I think about it almost every day. My husband and I want to have a baby and after what i've read about this disease, I'm starting to think that it would be wrong of me to knowingly pass the gene on to my child.

I would love to hear from anyone in my situation. I'm wondering if I should get tested..I really wouldn't even know where to start. I imagine that since this is such a rare disease, not all doctors are aware of it.

Thanks for letting me express something I haven't talked about it many many years...

Welcome MMM...

There is genetic testing available to determine if you are at risk for getting this disease. I don't think at this point, that you are 'knowingly' passing this on to a future child, because you may not even carry the gene.

Not all Alzheimer's is heriditary, so I would encourage you to speak to your doctor, and discuss with him/her the possibility of genetic testing.

Incidentally, my Mom is the first one in our entire family history that we know of, to ever have Alzheimer's...especially Early Onset.

I hope this helps. Good luck to you!

MMM-

I struggled with this too. My dad was in his forties when he showed signs and I was 13. Around age 21 I started thinking about getting tested for the gene. I decided not to find out. It is a very personal choice that only you can make. In my case, I decided if I knew I was going to get Alzheimer's, I would make upsetting life choices. I may not get married. I may not have children. Perhaps I would do some good things too, like travel and "enjoy life" but when I really thought about it, I think it would feel like a death sentence. I did talk to a genetic counselor (which I would highly recommend) and she said many people feel very differently. They feel like a door has been opened. They aren't worried about the future because they know the truth and they can make positive choices accordingly. This huge difference in possible reactions is why this is not something anyone else could answer for you.

Some other things to consider: If you are shown to have the hereditary type of Alzheiemer's, there could be insurance ramifications. You could get dumped from current policies and ineligible for long-term care insurance. It will also raise premiums. If you have any siblings you will want to check with them, because they may not want to know the results and it could cause some tension.

One thing I considered doing with my dad was having his genes tested for the familial type of alz. I haven't done it yet, but here is the logic: if I test him and he does that the familial gene, I will have to make the decision whether or not I wish to be tested. If he does not have the familial type of alz I will not have to face the decision at all, and can rest easier. I still think about doing that, although it is scary to think of that as well.

Anyway, this is long and I'm rambling quite a bit, but the bottom line is: do what you feel would bring you the most peace. Imagine what your reaction would be to either outcome before making your decision. In my case, the outcome of me having the gene would be me deciding not to have children. This was too grave an outcome to take that step of testing. After all, my dad had kids and loved us and taught us so much before he began to lose himself. Would I have wanted him to make a different decision even if I had the familial gene? Absolutely not.

Keep in touch. Let us know how you are doing. I'm very sorry to hear about your mom. It is such a young age. I'll be thinking about you.

Rachel

Cat-Kansas & Rachel Kay,

Thank you both for your responses. I'm not quite sure if I'm ready to know if I am carrying the gene. My mother is the third person in our family to have this that we know of. However, she is the first with the official diagnosis. The other family members lived in another country where they were labled with "dementia" and died at very young ages.

I'm definatley going to discuss this with my husband to see what he thinks about me getting tested.

Thanks again for your support.

Kiki,

Where in Wisconsin are you? I am in Milwaukee. I am 28, my mom is 56 and was diagnosed with posterier cerebral atrophy in June that her doctor says will become Alzheimers. Based on my observations and reading, she seems to me to already be in the early middle stage of Alz. She moved in with me and my husband last weekend.

It's really great (although sad) to hear others experiences. I have thought about attending some support group, but am kind of reluctant because I think most people will be caring for older people and there probably will not be anyone in the stage of life I'm in.

I completely hear what you're saying about support groups. That's the reason I don't join a support group myself, (as horrible as it sounds), I don't want to listen to stories about others caring for an elderly parent...I'm only 29 and my Dad is hardly "elderly"! I'm taking care of my Dad who is only 57 with EOAD. He's in the middle stages as well and is currently living in an Alz. facility. My mom passed away 2 years ago, so it's just me.

So frustrating to hear people assuming the "sandwich generation" are all folks in their 40-50's!!

Ivk and I'monly28,

I feel your pain. I am 21 and my mom with EOAD is 45. We attended a support group together and were both thoroughly frustrated b/c everyone there was a caregiver and they were almost without exception OLDER than my mom, who has the disease! And they talked about things that are completely to foreign to our situation, with her being so young. I wish there were a group in my area of early onset families...the message board is nice, but for me there's nothing like face to face communication and a hug.

I am 32 and my mother was diagnosed with Dementia and Alzheimers when she was 48 (in 2000), she will be 55 on Aug 27, not even a 'Senior' yet. My father and I recently had her admitted to the hospital to have her observed and her medications adjusted. As of late she has been refusing to take her meds, urinating in places other than the toilet, picking things up off the floor and putting them in her mouth, etc. She was exceedingly ticked off when we left her there Friday! She kicked a wheel chair, wanted to punch us and the nurse (but thankfully didn't), and said she was not staying. It is so hard to watch her go through this because she knows what is going on but cannot do anything about it. She gets so frustrated! She used to be so smart, independent, strong willed, and headstrong. And now she is like a child, almost a toddler. She and my father have been together for 35 yrs, and my dad just doesn't know what to do without her there. I too worry 'what if it happens to me'. I also have a horrible short term memory (always have).

Do not forget to take care of and take time for yourself, it will make you better able to care for your loved one.

I have writter a couple of poems about my mother and would like to share. I thought you all may be able to relate.

***********************************************
THERE ONCE WAS

Where I see Frustration and Sorrow;
There once was Simplicity and Joy.
Where I see Confusion and Weakness;
There once was Knowledge and Strength.
Where I see Doubt and Despair;
There once was Courage and Hope.
Where I see Aggravation and Fatigue;
There once was Compassion and Vitality.
Where I see Indecision and Heartache;
There once was Direction and Ease.

Where you see Agitation and Intolerance;
There is always Patience and Understanding.
Where you see Scorn and Rejection;
There is always Respect and Love.

By: Kelly
10/11/06

© Copyright 2006 Kelly Einkorn - All Rights Reserved

***********************************************

DEAR MOM

I know you dont remember all the things you've said and done
This Disease thats taken over is hurting everyone
To see you struggle day by day
Not knowing just what to say
To ask for simple pleasures
The right words would be a treasure
I cry myself to sleep at night wishing I could help
To erase the pain I see in your eyes and the frustrations that youve felt
The pills the doctors have given you dont seem to do much good
Your thoughts are so scrambled they dont work the way they should
Simple things become quite a chore
Tying your own shoelaces spelling the word door
I wish I had the answers to make you whole again
To free you from your prison where the walls are closing in

By: Kelly

© Copyright 2006 Kelly Einkorn - All Rights Reserved


***********************************************

Dear DragonStar,

That is a beautiful poem. I understand what you are going through. When I was still taking care of my mother in my home, she would do crazy things and act violently. Her entire personality changed. It actually became unsafe for her to be in my care and I had to place her in a home. She screamed when I put her there. She was so young and she asked me how could I put her in a place with all the old people and how could I do this to her. She threw a tantrum and I felt horrible. Unfortunately, I could not give her the round-the-clock care that she needed. It was also easier because the doctors visited her there instead of me driving her to the doctors, which was becoming increasingly difficult. I did feel like my mother had become my child and she acted like a toddler in their "terrible two's". It's a very difficult position to be in when a parent is so young. I think you expect it when your parents are elderly, but not when they should be in the prime of their lives.

My heart goes out to all of you.

My Mom is 62 and is in advanced stages of EOAD. It started around six almost seven years ago, and I knew something was happening with her, but couldn't get a diagnosis. About 2 and a half years ago she was finally diagnosed. I am 33 and I have a 2 year old daughter, and I am also taking care of my Mom. Lately it has been very hard for me, my Mom is combative and just mean sometimes. She won't let me help her with anything, nor will she let outside help in. I feel I am losing control and it's a no win situation and it's affecting me and my health, as well as my daughter. I have two brothers, one who will not get involved, and the other who trys. I just feel I need more help somehow, it's getting to be too much. I wish I had more strength to help my Mom better. Any advice is welcome.... Thanks

I'm new to this board too. I checked out this link on behalf of my kids who are 17 and 13. My husband/their dad was diagnosed 6 years ago when they were 11 and 7. It breaks my heart that they don't remember him any other way.

He has become aggressive, combative, and volatile in the past few weeks after years of holding his own and actually doing quite well. I'm almost afraid to be at home with him, and he has threatened our son to the point that I won't let him be home alone with his dad anymore.

We live in a small town, and it's been very hard on the kids as their peers have found out about their dad. Our 13 year old (girl) is mortified any time he goes with us anywhere. Our 17 year old son is his biggest fan and has an incredible amount of patience with him, yet he treats our son the worst.

We have a lot of help from family and many friends, but I'm afraid he's becoming too volatile to keep him at home much longer. How do you know when it's time????

Hi Kim, I am so sorry for what you kids have been going through. In our case it is me that has the disease. Would your daughter be interested in chatting during the week? My son just turned 13 and is having a hard time dealing with this as well as his hormones. Putting both hormones and AD together is as close to hell as it can get. Also we are starting a summer camp for 2008 for ages 10-15, would your daughter be interested? Send me an e-mail if so and we can chat alittle more.

I was dx at age 57 with EOAD,I'm 67 now but was rediagnosed last Dec.with Vascular Dementia.I will progress in time........