I have Alzheimer's

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I have Alzheimer's


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Old 01-12-2012, 18:22   #1
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Default I have Alzheimer's

I was diagnosed with Alzheimer's. It is easier just to call it AD.

I have found out that it is "still in the closet." Once I was diagnosed, I am now incompetent in legal terms. It is a good thing that I made out my Advance Directive several years ago. I have named my husband to make any medical decisions when I cannot.

Everyone should have an Advance Directive. You never know when you are unconscious or something will happen that you cannot make medical decisions for yourself.

I am in the early stage of AD. My neurologist is trying medications to find one that will slow it down. Sometimes, it can be kept in the early stage for years. There is no cure.

People do not like to talk about it. They do not want other people knowing that they have AD. All of my friends know that I have it. I am not going to stay "in the closet."

That is why I have been away. I forget a lot, including how to find my email address.

I hope you understand and will remain my friends.

Please give me your feedback about how to remember to test for my blood sugar. I keep forgetting to do that.

Ruth

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Old 01-12-2012, 18:41   #2
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I am so sorry to hear that!

Some of the BG monitors can remind you to test your sugar by beeping at a set time. You may want to keep a logbook so you can see when you've tested in the past. *hugs*

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Old 01-12-2012, 18:49   #3
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I am extremely sorry about your diagnosis ... but I'm also inspired by your decision to keep "out of the closet."

Thanks for the great advice about the Advance Directive!

Please know that we're all here for you.

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Old 01-12-2012, 19:16   #4
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I hope your husband can help you remember to test often!

You are bold and brave to not keep "in the closet!" More power to you.

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Old 01-12-2012, 20:04   #5
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Ruth, I'm very sorry to hear of your diagnosis. My mom has alzheimer's and with medication stayed in the early stage for years. She's now middle stage, but has a very positive attitude and enjoys her life.

I moderate a mailing list that is for people with dementia (all types), and will send you information about it in case you're interested. There's also a wonderful organization with a mailing list DASNI: Dementia Advocacy and Support Network International that is for people with early stage dementia. A very close friend of mine was diagnosed with early-onset when she was 50, is now 65 and also enjoying her life. I'm so glad you realize life doesn't end because you have Alzheimers!

A man who was on a list I frequent has been inspirational to so many. He has had Alzheimer's for about 10 years, and is still writing his blog. You can read some of his past newsletters here - Newsletters | Richard Taylor Ph.D. | My Story: Alzheimer's From the Inside Out - and sign up for them if you'd like.

Sending hugs across the wires.

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Old 01-12-2012, 21:46   #6
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My heart goes out to you, Ruth; you are very brave and I admire your courage in telling all your friends. I am sure those who are your 'real life' friends will be just as supportive as those on this forum are proving to be.

 
Old 01-12-2012, 22:51   #7
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Ruth, thanks for your openness. I feel I speak for most of us when I say we're here for you and wish you all the best. If there's anything I can do to help, let me know. You are a real example of courage and spirit to the rest of us in telling us and being so open.

Thank you!




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Old 01-12-2012, 23:46   #8
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Quote:
Originally Posted by AnnC View Post
My heart goes out to you, Ruth; you are very brave and I admire your courage in telling all your friends. I am sure those who are your 'real life' friends will be just as supportive as those on this forum are proving to be.
Hi Everyone,

I do not feel brave or have courage in telling my friends. When I was diagnosed with epilepsy at the age of 6, it was still "in the closet." Now, it is not. I told everyone.

I remember when my grandfather had diabetes, it was "in the closet", then. He remained "in the closet."

You are right, this is when you find out who your real friends and what support groups want you. Three support groups have dropped me.

My real life friends are very supportive and have not left my side. I am glad that you all are very supportive.

I have gone to two support groups for Alzheimer's and I have found out that the caregivers want nothing to do with the clients. Only a nurse or a moderator will talk to me. The caregiver's main problem is the legal matters. They did not take care of it when the loved one was in the early stage. They should have talked to their loved one and found out what their wishes were, when the last stages happen. That would be when they would no longer be able to tell their wishes.

Everyone should have an Advance Directive even if they have no health problem. You never know when something unforeseen will happen. Then you are in a hospital and cannot express your wishes. Without it, the hospital does what they think is in your best wishes.

My husband is healthy and refuses to have one. No one in his family will be able to help him if something happens. I am now legally incompenet (sp?) to have any say.

Here is an important link:

http://www.ahaf.org/alzheimers/livin...almatters.html

I just looked up my "likes" and found out that I had put this thread in last July. I am sorry, I really do not remember. I hope you will overlook my repeats, confusion and forgetfulness. I do appreciate your support here.

Ruth

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Last edited by fiesta; 01-13-2012 at 01:17. Reason: repeating myself
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Old 01-13-2012, 08:04   #9
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Hi Ruth, glad to see you around again. Post things as many times as you like, we don't mind.

as for remembering to test your blood sugar, maybe set an alarm? that works for me

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Old 01-13-2012, 10:51   #10
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Welcome back Ruth. I'm sorry to hear of your extra burden but hope you'll continue to visit here regularly.
Best wishes for 2012, John

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