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Alone in this
Brooke Marie Mae
Posted: Thursday, September 3, 2015 5:36 AM
Joined: 10/18/2014
Posts: 32


I know that a lot of others have early onset alzheimers but I don't know anyone that does. Noone seems to "get it". When I try to share about my memory loss and my fears they try to make me feel better by saying they have a bad memiry too. It's not the same and they just don't GET IT. Please talk to me. This is my first time on this board and I just lucked out and found this screen so hopefully I will be able to find your responses as well.
Iris L.
Posted: Thursday, September 3, 2015 7:09 AM
Joined: 12/15/2011
Posts: 18342


I understand completely, Brooke. Unlike some of the other members, I do not disclose anything about my memory loss to the public, because they have proven to me that they do not "get it." I am tired of being put down by them.

I confine my sharing about memory loss to this board.

Iris L.



alz+
Posted: Thursday, September 3, 2015 9:21 AM
Joined: 9/12/2013
Posts: 3608


Brooke - glad you posted about this. Very common.

I was one of those who USED to tell people about having ALZ - maybe I thought they would cut me slack. But I quit after a plumber came and walked off with a great bathroom faucet which I did not understand until he had left drive way.

Yes, talk about your issues here where we ALL get it.

I am married and living alone with it, most people are not cut out for caregiving and their reasons for staying are not helpful.

One other thing I noticed, my short term memory may be cutting out but a lot of other abilities remain. As I went along dealing with problems before diagnosis I learned (unknowingly) how to compensate.

Some of us have wonderful support, others are ignored, marginalized. It is awkward to be put in a position of trying to explain to people, even those you really feel close to, what it feels like, what it means to have dementia.

Right now, or whenever you feel stressed, don't bother with those who don't get it and beware of some who pretend they do.

Please write more. We are here to help each other LIVE WITH dementia. There are no mistakes, no shame. It is very difficult but it is doable esp with support of others who have been through the fires already.


Mimi S.
Posted: Thursday, September 3, 2015 10:32 AM
Joined: 11/29/2011
Posts: 7027


Brooke.
Welcome to our world.

Yes, you have hit on a topic that offends many of us, early onset or not.

Once I was being fed that lie by a friend of mine. I knew she had just recently had er first grand child. So I looked her into eyes and gently asked: Do you gorget your grand child's name. I wish I could describe the look on her face. She got it.

Iris has not had good luck disclosing. I have chosen to go public. We need more of us to go public, so folks can begin to understand that there is a beginning point to all diseases and we, who look and act so "normal" represent the beginning stage.

And Brooke, by taking the meds and being proactive in or care of ourselves, especially by our participation in Best Practices, we can slow our progression down to a slow crawl.

Do contact your local Aliz. Assoc. Chapter (call 1-800-272-3900 for the local #. Call and introduce yourself. Ask if there is a local support group. Also ask if the chapter has a phone support group. Our chapter also will put someone like you in touch with some one like me, so we can chat one-to-one.

Do get involved in your nearest Walk to End Alz. You might even be asked to speak at the Walk.

In the Spring there is a National Forum in DC. Just prior to the official opening there is a meeting just for us folks who have the disease. For me, it was the highlight of the time I was in DC. Just to get to speak with a room full of folks with a similar diagnosis to myself was so wonderful.

Part of the purpose of the Forum is to meet and lobby our congresspeople or their staff about the disease. Do ask your local chapter about it. You have to pay transportation there and the hotel fee. The registration and fees for the forum are waived. Local chapters sometimes can help with the costs by scholarship, sharing rooms and sharing rides if you are close enough.

I do know what you mean by needing to actually meet someone in the flesh who is also diagnosed. Meanwhile, do go on the Younger Onset board and meet more of us.

Brooke Marie Mae
Posted: Thursday, September 3, 2015 12:05 PM
Joined: 10/18/2014
Posts: 32


Thank you for all your responses and support. It helps to know that there are people who"get it".

I am 61 years old with early onset alzheimers. I live in a small northern community in British Columbia, Canada. I have been in contact with the Provincial Branch of the Alzheimers Society. They are very supportive in that they have sent me literature and are there to talk to. There is no local support groups available here.

I am married with a very supportive husband. My sister also lives in the same community but doesn't get it at all and tends to drive me crazy with her "poor me" attitude and comments. I don't share my diagnosis with many people but word seems to get around anyway. Most people don't bring it up though so I don't have to worry about whether they get it or not.

I wonder if I could still connect with a Peer Support person even though I'm Canadian. Thanks again for reaching out to me.



Brooke Marie Mae
Posted: Thursday, September 3, 2015 1:25 PM
Joined: 10/18/2014
Posts: 32


To Claudia TBL

I received your friend request and clicked the "here" button and signed in but don't know what to do from there to accept the request. Please send me instructions.

Thanks!

Mimi S.
Posted: Thursday, September 3, 2015 6:47 PM
Joined: 11/29/2011
Posts: 7027


Hi Again, Brooke Marie,

Call your local chapter again and tell them you want to be put in touch with someone who is i Early Stage and would be willing to talk with you on the phone. Say you would prefer someone in your age bracket, but lacking that, yu do want to connect with someone in Early Stage.
Hopefully that will work.

If it doesn't come back direct a message specifically for me and I'll see what I can do here.

When you receive an invitation to connect, all you have to do is hit agree, or something like that. then it's up to the person who contacted you to follow through. Answering and returning a message are easy.

Iris L.
Posted: Thursday, September 3, 2015 6:54 PM
Joined: 12/15/2011
Posts: 18342


Brooke, the way you are communicating with us is fine. We use the message board to communicate with each other. Just keep posting, and someone will respond.

There are more members posting on the Younger Onset Alzheiemer's board, but this one is okay, too.

Iris L.

The_Sun_Still_Rises
Posted: Friday, September 4, 2015 8:22 PM
Joined: 7/24/2015
Posts: 3020


Hi Brooke,

Yeah, I haven't met anyone that gets it either...and they invariably say dumb things like that they forget things too. It is so invalidating, and sure makes one feel isolated and alone.

I am sorry that the public is still so far behind in understanding dementia. It seems all they know is the end of life scenes...which is likely because that evokes the greatest pity and largest donations. I wish people understood, especially with young onset, that we are still here...still pretty competent...and still able to function (with help)...long before we get to the invalid stage.

Hi, I have young onset...I too wish to meet others who have it.

I just did the math the other day on how many people likely have young onset (they figure 5%-10% of those who have regular Alz. They only count people with actual ALZ (which is only 60%-80%) of dementia...and they only count those 65 and over.

Anyways, in the whole United States, that is 636,000-742,000 people with young onset dementia...and roughly at least 12,000-14,000 people per state. So you, me, and the rest of us - we are NOT alone.

One of the very false misperceptions is that there are not very many of us, that couldn't be more wrong.

So hang in there. There are some really great people on this site. There is also a young onset section on this site too.

Nice to meet you.


abeautifulwaytolive
Posted: Sunday, September 6, 2015 4:35 PM
Joined: 8/17/2015
Posts: 86


Brooke,

I am caring for my mother, and she has versed to me almost exactly the same thing!

I am so sorry that a lot of us can't put ourselves in your shoes. It's really hard to see something that only you can see, and most of the care partners I know (myself included), are trying to convince themselves as much you (i.e. it's not that bad, I get bad memory too, it's normal, etc. etc.)

My mother is very vocal in new symptoms, or struggles, and in her hopes and fears, so I feel like it gives me an insight into her life that I wouldn't have otherwise. In return, I am very vocal as well, as I feel like we have a better bond pwd to cg.

I don't think anyone can really know what someone else is going through, unless they've been living with you for awhile, and even then, the battle is yours alone to face.

The best we can do is to stand by you and hold your hand through out, and keep telling you, no matter what, it's going to be okay.

I hope this helps, and keep fighting!


Tammy T
Posted: Monday, September 7, 2015 8:33 PM
Joined: 9/1/2015
Posts: 2


Hi I am new to this post and last month I had a MRI scan done on my brain because of having headaches and the doctor said that the founding were the blood vessels were small and shrinkage was going on and this is when I ask my doctor if it was a sign of early Alzheimer and he told me he could see a change going on, but he was going to turn it over to a neurology to check it out. Now I am just waiting for next step to come. I have cried cried all I can and have now put it in God's hand which is sometimes hard to do. I begin writing a journey about my day and how I am doing. I just had a strange feeling that something like this may happen to me because my Mom had die at age 75, but she did not go through the stages she had a massive heart attack. Please I need encouragement about this illness. I am 53 years old and been married 34 year coming Sept.11 this year. My husband has been having a hard time dealing with me, He is shocked over it just as much as I am. We told our Son's which we have two ages 33 and 30 years old. When I look at them I just break into tears because I know one day it is going to happen I will forget their names. Please Help Me!!!!
The_Sun_Still_Rises
Posted: Monday, September 7, 2015 10:32 PM
Joined: 7/24/2015
Posts: 3020


Hi Tammy T,

I am so sorry that you are going through this.

Because of the blood vessel issue, it sort of sounds like it might head in the direction of vascular dementia. And your doctor is right, neurologists know much better about these things.

I know that this is all very upsetting, but if you can try to find a way to reduce the stress you are experiencing. Stress makes confusion much, much worse...so anything you can do to get on top of stress will help you to feel better.

When I am scared and facing a tough situation, I try to remember that I will feel differently in 3 days time. That between the moment where I feel like crisis is happening and 3 days...the sun will continue to rise. I think of all the other times I felt like crisis what happening and it always seemed better a few days later. The urgency and crisis feeling usually doesn't last...so just try to ride it out the best you can.

On the good note, if it is dementia...it is a long slow process and you will likely have a long time to prepare. Many here have had it for years and we are still here talking about it.

If you have it, you might one day at the very end forget names...but you will likely not forget them. You wont lose how their love feels. And you don't lose who you are. Also vascular dementia works differently than Alzheimer's. And, it might not be it at all.

Most often when we think of Alzheimer's we see end stages and horror stories, but there is so much life (good life) between now and then...and years. And many do not experience the horrible images the media shows us. Many have wonderful peaceful journeys with it.

You also have family, sounds like a wonderful one, and you have some really supportive wonderful people online here too...and we will all help you through the coming times. You are not alone.

You are also stronger than you know. You are a mom, so you know how they took you to your limits as babies...and somewhere, somehow you found it in you to keep going and keep being there for them? You will do the same now. You are stronger than you know...even when it doesn't seem like it.

If the sadness or anxiety is really getting the better of you and you cannot get on top of it, you might consider seeking help and someone to talk you down through it in person.

You might also consider just giving yourself the space to grieve and be scared. It is a normal human response. Strong emotions usually don't last long. They usually say to think of them like a surfing wave...and you just ride it out until the intensity goes down.

Distractions might help. Finding something to do that is so engrossing and engaging that you can get your mind off things for a while during the time you are waiting for that appointment. I find Lifetime movies and Sunday Afternoon Matinee type movies are usually simple and engrossing enough to draw me in and keep me fixed on what is happening. Marathon watching 7th Heaven or Touched By An Angel might help you pass the time.

Hang in there. We are here if you need to talk too.



Eden Desjardins
Posted: Tuesday, September 8, 2015 8:29 AM
Joined: 5/25/2015
Posts: 48


Hi Brooke,

Welcome to a journey that you did not choose but must unfortunately, walk. I wasn't sure if you have family - a husband, children.. relatives, anyone that you can share with so they would be prepared to lend a helping hand later would be tremendously useful.

If you ever have bottled up feelings, please feel free to talk about your troubles with us and while there is still no true cure for Alzheimer's - there are many things you can learn to do to help you remember things.


Jo C.
Posted: Tuesday, September 8, 2015 8:41 AM
Joined: 12/9/2011
Posts: 13462


A very warm welcome to two new Members.

Brook Marie Mae, I am so glad you have found this wonderfully supportive place. I have spent time in British Columbia and just loved it; beautiful place with warm and welcoming people. I am so glad you have a supportive husband. He too is more than welcome to come and join the Spousal Forum. It is a warm and welcoming place with much support from Spouses who are on similar journeys.

Tammy T.; you too have a very warm welcome. NOTE: It appears you have not yet seen a Neurologist who will be better able to interpret what your MRI results really mean.

Tammy; you may not have Alzheimer's Disease. In some people, the vessels are smaller for one reason or another AND as we age, our brains will show some "shrinkage" as a normal part of aging. That does not mean that any type of dementia is present or even will be in the future.

So; hang tight until you get an absolute diagnosis. The experts need to "rule out" possibilities as well as "rule in" other factors and other causes.

I send a warm hug to each of you and send best wishes your way,

J.



 
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