Hello, my name is Sarah.
This may be a long post but I am desperate for you to read it, I need comfort and advice and anything anyone can offer right now.

I am a twenty-two year old daughter of a 50 year old mother. My life has been very difficult and my mothers has been even more difficult. I can't even begin to describe what we've gone through.

She told me yesterday that she was diagnosed with Alzheimer's disease six months ago. she had been hiding it from everyone and I am the first one she has told...I have a brother and I know she needs to tell him and I've told her she needs to but she refuses to at this time, she says she can't do it yet. She hasn't told her boyfriend of 17 years yet either...

I was so incredibly destroyed when I heard this...I couldn't even believe what I was hearing. I am trying to act strong and not lose it around my mother and so far i've been successful with that and I keep my tears to myself right now.

I keep reading about this disease as much as I can and I can't help but feel even more hopeless as I learn more...I can't think about anything else and I am terrified. I can't lose my mother, not like this.

I don't know how to act or how to feel or what to think, I don't want to think about this every constant moment I'm awake but so far I can't much help it. I feel horrible because I can't imagine how she feels being the one that is going through it.

She forbids me to talk to anyone we know about it so I am resorting to this, she wont even talk about it with me much yet. She says she already regrets telling me because she feels like it's a burden and I feel hurt she didn't tell me immediately.

On top of this news she is also a diabetic, and a severe alcoholic...but I think she tells her doctors otherwise about her drinking...

she has been an alcoholic my whole life, basically. her father and her mother were as well I believe...her father also molested her when she was young, her twin brother killed himself at the age of 19 and that changed her for the rest of her life...she had to have an abortion when she was 16 which she cant seem to forgive herself for even now....then she met my father and well...they both drank a lot and he was abusive towards her, slept around behind her back and barely kept food in the house for her. So finally she had to take my brother and I and get out....I don't remember a lot of my child hood...I blocked a lot of it out. But I remember when she got with her current boyfriend who is also an alcoholic...they would be drunk all the time...and nasty drunks. they'd fight and scream all night and cops would show up at our house.

all i could do is cry and see them like this and wonder why it was happening...it happened all through elementary school and middle school. we'd miss school all the time because some times we'd leave in the night her boyfriend and her were fighting so bad and we'd be up all night and too tired and upset for school the next day. I remember always walking home from school and wondering "will they be drunk already? or will it be okay tonight..." i hated wondering that every day and then dreading to find out.

it was an awful time in my life.
then i started high school and my mom got sick. she was in bed for about a year before she decided to go to a doctor. it hurt me so bad... i needed her so much then. I would often come home and poke my head into her room wanting so bad to talk to her and tell her about my time as a freshmen and what i was going through...but I never wanted to wake her up.

well finally they find out she has a tumor the size of a grapefruit inside of her ovary...and she has a hysterectomy and she stopped drinking for awhile after that and got so much better, those were the best two years of my life.

then she had a relapse when she went to a party and she started drinking again and its just getting worse and worse as time goes on.
these last six or so months its like she drinks almost every single day and gets way drunk.

and of course she has to drink the worst thing, vodka....and she is so sensitive on the subject i dont even know how to talk to her now.

I know she needs to stop drinking and I need to some how convince her but she just says she plans to stop but gradually...and then as she told me that earlier today she is drunk right now as we speak in the living room...

Man...i don't know how much else can go wrong in my life. I have a boyfriend who is in california right now and I'm supposed to join him and when I was talking to her about it she is crying and telling me she cant lose me and needs me and some day may need me to take care of her...and thats when I knew something was up by how she was saying it like she knew already she'd need me before I even knew it...so thats when I got her to break down and tell me about it. and now I feel selfish for thinking about myself and I want to go and be with him but now how can I leave her? I can't. I have dreams of going places with my art and some day some how making a career out of it but i feel like it's just not going to work out for me for some reason...I feel like I don't know if I can leave her ever. This woman is my light and my best friend and my mother that I love with everything I am...I love her even through her alcoholism I've loved her with all of my heart.

tonight i read on a few websites that severe alcoholics are some times misdiagnosed with Alzheimer's disease as drinking excessively can 'cause dementia and personality changes and part of me wants to hope that maybe she was misdiagnosed that if she stops drinking and tells her doctors about her drinking that she can get help with that...maybe someone else could tell me a little more about it?

I just feel so confused and sad and afraid.

I need some kind of hope, please, anyone....advice or information or anything you can offer me would be fantastic.

Also if you could please, please pray for us. Sarah and Nancy Floyd of Virginia...my mom has been through so much in her life. Please, please pray for us.

we could use all the prayer we can get right now.

You have a chance to begin a new life. Your mother chose her life and lived the life she chose. God wants us to be happy and joyful. Anything else, is not of God. Live your life joyfully. You are not meant to live your mother's life. Second chances do not always come. Take your one chance at life and make the best of it. This is what God would want you to do. Do not look back. Look forward to your blessings heavenward and live your life the way God intended it. Be Happy.

Sailor Sarah,
Please find and call your local Alzheimer's Assn. Go to Alz.org. and fill in your zip code. There are lots of people to talk with and visit. They have great counselors there and it's free. As for your Mom, I can't make those decisions for you. Alcoholism is a terrible disease in and of itself. She may have memory loss, dementia and confusion from just the alcohol!! She may not have Alz. Please talk with a counselor ASAP! They can assist you in many ways. Please, live your life for yourself and not your Mom.
I'll be praying for you and your family,

Peace and Hope,

thank you so much lisa for your response.
I really appreciate it and I am going to take your advice...I think speaking with counselor would be extremely helpful for me right now.

I keep wondering if she was misdiagnosed because of her severe alcoholism and the fact that she is only 50 and that we have no family history of the disease.

but I still know not much about it and I am learning more each day. I've only know for a few days now myself.

Sarah, I've responded to two of your posts in the Caregivers forum,
but I didn't realize you were so young. I have a 22 yr. old daughter
named Sarah as well!! I just read this post, and yes, you DO have
alot on your plate.
Your childhood describes much of my own. I grew up never knowing
what a day would bring. Your post was so insightful and mature.
God bless you Sarah; you're a young woman, but seem to have much
insight about whats gone on in your life.
You're a wonderful daughter to be so concerned for your Mom.
I don't want to say too much, because it would only be my
opinion. Since you are my OWN daughter's age, I want to tread
lightly here. Part of me agrees w/ what tjm said: you NEED to
live your own life. Yet, its easy to see how much you love your
mother by what you've written, and running away from these problems
may NOT be whats best right now. I encourage you to learn all you
can right now, and even though this forum is for Alz./dementia,
I also encourage you to seek a group such as Alanon. I grew up
in an alcoholic home, then married a man who had an alcohol
problem. Thank God my husband has been sober for almost 7 years
now. But when my kids were little and we were living in Florida,
I found an Alanon group that was fantastic. I learned so much
about separating MYSELF from the alcoholic person, and how NOT
to be co-dependent. In your search for support w/ the Alzheimers
diagnosis of your Mom, maybe check out the Alanon support too.
God bless you Sarah, and keep having hope!!!

Sarah,

I am already praying for you and your Mom. As I was reading, the thought occurred to me that it could be Alcohol related, not AD. Then, you wrote that you thought that too! You obviously have done a lot of research about this.

You're only 20 -- I am also praying that you get to have some fun now in this wonderful time of your life -- early 20's should be full of fun and adventure -- don't feel guilty about that!

Since you said your Mom doesn't tell the doctors the truth about her drinking, misdiagnosis is very likely. You need to call her doctor and tell them. When dealing with AD, the doctors WANT to talk to the one who will be the caregiver. They expect it, and I think that should be one of your first steps, along with all the other advice. More importantly, I knew two people, well I knew the one and the other was an aquaintance of my sister, who actually died because they didn't tell their doctors about their drinking -- one went in for minor surgery and went into shock (they didn't know it was alcohol related so didn't treat him correctly), and another one who got pnuemonia and had complications which the doctors didn't know was alcohol related. It's very important that she tell them everything, they won't judge, they'll just help.

You shouldn't have to handle this all by yourself. You Mom is not being fair by putting you in that position. I know she put her trust in you...but now she has to trust you even more, and let you do what you think is right. If she does indeed have AD, you will need much support from the family, you have the right to ask for it.

I hope and pray it isn't AD, and that she can stop drinking again.

Felicia

Sarah, regarding the life your mother has led, and the consequences she's suffering, I want you to know 3 things:

1) It's not your fault.
2) It's not your fault.
3) It's not your fault.

Much love and support,
Alan

matnet,


it's cool that you have a 22 year old daughter named Sarah.
and also it's not nice at all to know that you experienced that kind of childhood but it's nice
that i'm not entirely alone and that there are people that can empathize with me on it.
because it has always been really hard and I feel like I've experienced very little in my life so far.
and I've always put myself last and I'm tired of that...
though I love my mother more than anything and though she has her downfalls she is basically the most beautiful person in my life
and I could never trade her for the world.
I care too much and I will forever be there for her and I know right now I need to focus on living my own life
I know I can't 'run away' from this right now and I need to be here for her but eventually I do want to break away
not from her or the problems we're going through really but I just want to break away and find myself
and find my own independence and my own way into this life while also still being there for her.
i think Alanon would be wonderful fo rme because I need to learn how to seperate from my mother...
so much of my life I missed out on doing things with friends and going places because i wanted to stay here
and make sure she was okay all the time. And even though I want to start working up to having my own life and living out my dreams finally...
I feel guilty because after she told me this...I feel like...how can I leave her now?
I don't want to I feel like she needs me but I also feel like I need me...and I need my life to be what I want it to be..
I just want to find my own happiness. I want to feel what it is like for things to go right and for dreams to come true.

And I've always been a very mature person even as a child. I did for myself a lot and I kept to myself a lot and I tried to do everything right all the time because
my brother was always skipping school without my mom knowing and he would do drugs and failed a lot of his classes and such...so I always felt like I had
to be the one that was the 'good' child and the one that was responsible so that I didn't cause anyone any more problems, we had enough already.
I remember times when my mom had a problem with something or someone or was just upset
I'd sit down with her and think about it and then evaluate the situation in my mind
and then i'd just give her my insight and advice on the situation and she's always gets this amazed look on her face and says to me "how do you know so much about life already, how did you get this smart ?" she calls me an old soul. :P

but anyway, I think it's just because I've always been very good at noticing things for the most part. I observe everything and I'm a good listener.
People always come to me when they have problems it seems. some times it makes me feel exhausted because most of what I feel is kept inside.
and I never get to talk about my problems. I just listen and try to help everyone else deal with theirs... I'm a very compassionate person
and I love people. I love getting to know people and I love making people happy and helping them. But some times I get tired of being the listener.

Anyway, thanks so much for your responses, I really do appreciate it.
I know I need to start seperating myself from my mother even though this is going to make it even more difficult now.
I need to worry about me and learn to still care about her as well without letting it consume all of me.

I am going to find out about alanon around my area soon and see if that will be helpful for me because I think it will be.
And this message board is seeming like a great support system to.
and god bless you too. all of you.

Sarah,
you're a doll!! I have always felt in life the way you described your
feelings growing up. For most of my life I have put myself aside
for others in my family. And I was also the "good child." Me and
one of my younger sisters. We're from a family of 8 kids; I'm #5
and she's #6. We actually made a "pact" when we were young, to NOT
get into trouble...we both didn't want to rock the boat or upset
our parents. The older 4 kids went through their share of "trouble,"
and the LAST thing we wanted to do was cause more.
You truly are an "old soul." Not many people would guess your
age by the way you write. (beautifully!!) I don't think I need to
add anything to what you've already said; I do want you to know
that I'm now 44, and I'm just NOW realizing that although I love
helping my family too, that I need to find things in my life that
make ME happy as well. You're just starting your life, and if I
could say just ONE thing to you, it would be: DON'T FORGET YOURSELF.
Its OK to help your family when and where you're able to. In fact,
its a wonderful quality that you have. But sometimes people (me for one)
give up too much of themselves and take on the problems of others.
I used to think it was an admirable quality. Now I think it was foolish
of me. If we aren't true to ourselves, we end up feeling resentful;
resentful of people, resentful of decisions we've made, resentful of
life itself. I'm just now realizing that there were so many choices
I could have made differently, while still being there for my family.
And had I made those different choices, I would have been a more
well rounded person, a more emotionally healthy person. And, my
kids would have had a happier Mom. And thats ALWAYS a good thing.
I think you're heading in the right direction Sarah; I've read
your other posts, and you are so open to learning and growing.
And with your positive outlook, I believe you WILL grow and
learn; and I also believe that you will make the RIGHT choices
for your life. Your Mom is truly blessed to have a daughter like
you. And we're blessed that you've joined this forum. Take care,
and God bless you..sending you a ****hug******

Sara I was diagnosed with Alzheimers when I was 57.i'm now 68.Will be 2 yrs in Nov.when I insited to be retested.The new diagnoses is Vascular Dementia,Dementia none the less.I am on medication for it.Razadyne has greatly helped me.I still can do what I want,drive were I want when i want for now.That will no doubt change at sometime but for now I'm living my life MY WAY.I see my Neurologist twice a year.He thinks I'm doing exxelent,me 2..........

Snowy, that's so wonderful.
I really really hope that something like that will be my moms case. I don't know. I'm just praying hard every day and am trying to not let it consume my every thought.

Matnet,


I feel even though we have an age difference between us we seem to be quite similar.
I really do appreciate all of the responses I've recieved from you.
You seem like you're a very nice woman that I think I could relate a lot to.
And yeah, I am realizing how much I am tired of putting everyone else before me.
It truly is exhausting and I don't want to wake up one day with half of my life being gone
and feel regretful or resentful for not living my life the way I need to, for myself.
It still makes me feel guilty that I am wanting to put me first though.
With everything that is going on...but I feel like it is just time for me to wake up
and find myself. My true self.
I hope that you start doing for yourself more as well so that you can find your own personal happiness that belongs to only you.
You and everyone deserves that and it is never too late for it.
We all make choices we regret but instead of thinking back in regret
I know it is best to look forward into the future with the knowledge of regret
and change things for the better and do things a little bit differently so that I wont regret my future as well as my past.
And the past is the past, we cannot ever change it as we all know so forgive and forget
make mistakes, learn and grow...that's what I live by anyway.
and if we never regretted anything how would we grow and learn to change?
Now I am just rambling on...
but anyway,
it is hard for me to be positive when so much has gone wrong...
but I know being negative right now will just send me into a depression and I'm tired of sinking.
I can't keep doing the same thing and in order to change what I do I need to change how I think as well.
For so long I felt so angry and negative and depressed all the time....
and it pretty much was making me physically ill...no one can live like that.
So I pray hard and I love hard and I feel deeply and I see what I can see
and I learn as much as I can learn
and I hope that in the end I will reach some form of happiness and contentment
I have to be positive and believe that I will find that...
because if I don't then I'll just feel like I'm living for nothing and that there is nothing to look forward to in life...
and I know in reality there are so many things to look forward to and It is my time to explore them. Anyway, hugs to you as well and god bless.

Dear Sarah,
Yes, I do see alot of myself in you too!! Although you seem to have a
much better take on life at 22 than I did. Thank you for your kind
words; I am old enough to be your mother, yet since you have that
"old soul" I feel like I'm talking to someone older.
I wanted to say something about your statement that you feel guilty
when putting yourself first: You can't "give away" what you don't have!
What I mean by that is, unless you DO take care of YOU, and pursue
your dreams, and fulfill what God meant you to be, you won't be able
to do much for anyone else. I know how you feel; I still struggle with
feelings of "selfishness" when doing something for myself. Its not
a conscious thought on my part, but I believe subconsiously I think
I'm not WORTHY of doing things for. For years and years I didn't buy
new clothing (only when I had somewhere special to go) get my hair
done, pursue a hobby. Nothing!! I have attended church every week
for many years, so thats ONE thing I have done that was positive
for me. I don't believe God wanted me to forget myself however.
There IS a difference between taking care of ourselves and being
self centered. I'm still learning this myself, but maybe look at
it this way: since its easy for you to see that others are important,
try to remember that YOU are an important person too, and you have
needs that must be tended to. I've seen other's posts to you, and
I agree with them all: none of this is YOUR fault. Life has a way
of dealing us a hand that we may not be comfortable with. The best
we can do is keep moving forward (as you said) and do the best we
can with what we have. I encourage you to pursue your art. God has
given you many gifts, and this is one of them. Not only will this
fulfill one of your dreams, it will also help your Mom to know that
her daughter is living the life God intended her to. So many trials
that come into our lives are really not OURS to handle. Thats one
thing I've learned for certain. You said you pray each day. Thats
great. Continue to pray that God will guide you in the way He wants
you to go. And ask Him to bring help for your dear Mom. This situation
isn't for you to handle by yourself. Enlist the help of adults in your
life whom you trust. And keep coming back here, as there are many
wise people who can help you. Take care; hope to "talk" to you soon!!

matnet, you are truly a sweetie pie.
reading that made me tear up a bit.
I seriously have been feeling so much better
since I've posted on here and have been reading all these responses and other posts and such....
I feel a lot less alone than I did before and everything you say to me is right. I think you
are a wonderful woman! I don't know if you ever use any messengers but if you do I'd like to chat with you some time.

Sarah,
you are a sweetie-pie yourself!! I don't have
any "instant messengers" but I could ask my
kids about it. This forum has a chat area;
maybe we can "hook up" here. There are 3 chat
rooms I think. Let me know when's good for you.
I'm so glad you are feeling less alone. You are
NOT alone in your struggles; so many of us here
and out in the world have walked in your shoes.
(at least w/ the alcohol-my Mom wasn't diagnosed
w/ AD, so I can't say I understand that part-my
Dad has dementia but is alot older than your Mom)
Talk to you soon, do something GOOD for yourself
today!!

Sarah,

1) Find a counselor who knows about Alzheimer's and Alcohol Dementia.
2) Call your mom's doctor and let him/her know how much and how long she has been drinking.
3) Join your boyfriend in California and find an Al-Anon group out there.
4) Your mom is an alcoholic and you only have her word that she has been diagnosed as having Alzheimer's. Alcoholic's have been known to be manipulative. (Ahem!)
5) If your mom has truly just been diagnosed with Alz she may not need help for years and years. You can't allow yourself to get stuck waiting for that.

My husband was diagnosed last September with EOAD and I read all kinds of books and articles and freaked myself out. The one reality is that you have TODAY. Make the most of it. Live your life for you. If you have to make other decisions in the future, you have that option. But don't delay your happiness today.

Hi Sarah Sailor,

I'm a Staffing Coordinator for caregivers, and everymonth I have to create a test for them. I wanted to test them on Alzheimer's disease and related dementia. I was reading though a list of all types of dementia, when I came across "Korsakoffs Syndrom," and thought of your story.

Korsakoffs Syndrom is primarily caused by alcoholism.

Here is some information I thought you might like to read up on:

Korsakoff's syndrome (Korsakoff's psychosis, amnesic-confabulatory syndrome), is a degenerative brain disorder caused by the lack of thiamine (vitamin B1) in the brain. The syndrome is named after Sergei Korsakoff, the neuropsychiatrist who popularized the theory.

Symptoms
There are six major symptoms of Korsakoff's syndrome:

anterograde amnesia and
retrograde amnesia, severe memory loss
confabulation, that is, invented memories which are then taken as true due to gaps in memory sometimes associated with blackouts
meager content in conversation
lack of insight
apathy - the patients lose interest in things quickly and generally appear indifferent to change.
These symptoms are caused by a deficiency of thiamine (vitamin B1), which is thought to cause damage to the medial thalamus and possibly to the mammillary bodies of the hypothalamus as well as generalized cerebral atrophy.[1]

When Wernicke's encephalopathy accompanies Korsakoff's syndrome, the combination is called the Wernicke-Korsakoff syndrome. Korsakoff's is a continuum of Wernicke's encephalopathy, though a recognised episode of Wernicke's is not always obvious.

Korsakoff's involves neuronal loss, that is, damage to neurons; gliosis which is a result of damage to supporting cells of the central nervous system; and hemorrhage or bleeding in mammillary bodies. Damage to the dorsomedial nucleus of the thalamus is also associated with this disorder.


[edit] Signs
Ataxia
Apathy
Retrograde and anterograde amnesia
Confabulation
Tremors
Paralysis of muscles controlling the eye
Lack of insight to the condition
Coma

[edit] Treatment
Treatment involves replacing the thiamine by intravenous (IV) or intramuscular (IM) injection, and providing proper nutrition and hydration. However, the amnesia and brain damage caused by the disease does not respond to thiamine replacement therapy. In some cases, drug therapy is recommended to the patient. If treatment is successful, signs will show within two years though recovery is slow and often incomplete.


[edit] Causes
Conditions resulting in the vitamin deficiency and its effects include chronic alcoholism, and severe malnutrition. Alcoholism is often an indicator of poor nutrition, which in addition to inflammation of the stomach lining, causes thiamine deficiency.[2] As well as alcohol abuse, causes include dietary deficiencies, prolonged vomiting, eating disorders, or the effects of chemotherapy. It can also occur in pregnant women who have a form of extreme morning sickness known as hyperemesis gravidarum.[3] Mercury poisoning can also cause it. It has also been caused by centipede (mukade) bites in Japan[4].

Due to malnutrition and a lack of Thiamine, the hippocampus begins to decay, leaving holes that disallows one's rehearsed information within short term memory to transfer to long term memory (anterograde amnesia)


[edit] Prevention
The most effective method of preventing Korsakoff's syndrome is to avoid B vitamin/thiamine deficiency. In Western nations the most common cause of such deficiency is alcoholism. Thiamine was introduced to alcoholic beverages in the U.S. for a time, but this does not appear to have an effect on Korsakoff's syndrome, as the cause of Korsakoff's syndrome in chronic alcoholics is not a deficiency of thiamine in the diet, but rather a reduction in the body's ability to absorb thiamine in the intestine.[5] In the U.S., government mandates to adding thiamine to alcoholic beverages have been blocked for this reason and also by political groups asserting that such supplementation would encourage alcohol use.[citation needed]

Also, alcohol is, by itself, neurotoxic. It will cause neural damage taken in excess, especially in the hippocampus. The body responds to alcohol ingestion by releasing cortisol as a neuroprotective mechanism (animals that have been adrenalectomized may be killed by a fraction of the dose of alcohol that an unadrenalectomized animal may tolerate). Cortisol, specifically, has been shown to cause irreversible damage to the hippocampus when present in large amounts for extended periods of time.[6] Alcohol in excess may be causal in and of itself in Korsakoff dementia regardless of thiamine addition to spirits. Alcohol toxicity is cumulative; cessation of its use, or never having used it, will reduce risk of korsakoff and other dementias.


[edit] Case studies
A famous case study is recounted by Oliver Sacks in "The Lost Mariner", which can be found in The Man Who Mistook His Wife for a Hat.

Other cases include that of artist Charles Blackman[7] and entertainer Graham Kennedy.[8]

Hi.Your story really touched me! I cant begin to tell you how sorry I am to hear about all the pain you have been through in your life. I can relate to your SOME of feelings oh so well. Yes I so know what you mean. My mom was diagnosed about 1 year ago and I was devastated....crying and crying. Today I still have my depressive episodes where I cant eat, work, sleep......and I cry and cry. Obsessive thoughts about disease and mom's future. I dont know how to comfort you except to say that others can relate to some of your pain. I definitely agree with contacting Al-Anon and Alz Association. I would also really look into attending therapy sessions as well as anti-depressants for you. Please feel free to email me at Ladanmft@gmail.com if you need to vent or need a stranger to talk to.