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TrickB
Posted: Saturday, December 27, 2014 8:24 PM
Joined: 12/24/2014
Posts: 9


My husband has been diagnosis with Alzheimer's.  He is 55 years old We have been going to doctors for several years trying to figure out what was wrong with him.  I am in search of any advice or information.  Our world has been turned upside down. I don't know where to begin.

Thanks!

 


timshell
Posted: Saturday, December 27, 2014 9:58 PM
Joined: 10/30/2012
Posts: 1


Hello TrickB, my name is Steve, I live in Northern California.

I can't offer any answers but can identify with the upside down part.

Mine is different, it's my sister two years older that me at 64 who I have taken in because it was the best of the choices for now. She has early onset and it has been nothing like what I expected a year ago when she arrived.

Feel free to write back about anything, my experience is that support groups for this really do not exist, every instance is so unique.

But if you just want to describe what is going on or write about any thing at all, I am here, sometimes that's really all one can do...

your friend,

Steve O.

 


File Attachment(s):
sis and me at walk.jpg (98486 bytes)

Iris L.
Posted: Sunday, December 28, 2014 1:04 AM
Joined: 12/15/2011
Posts: 16569


This link will give you information on the steps to a diagnosis:


Guide to diagnosing and treating dementia: What your doctor should do: http://dementia.americangeriatrics.org/ 


Iris L.




alz+
Posted: Sunday, December 28, 2014 3:21 AM
Joined: 9/12/2013
Posts: 3560


My advice as a former caregiver to my Father and now as a patient is focus on quality of life.

 

Each person travels this path differently. The illness has a horrific mystique around it and in my world that sets up everyone for stress, panic, anger and depression.

 

So far the world wide count on dying for humans is still maintaining at 100%. Although it is a shock to learn someone is going through this as a younger age if you start out with a good philosophy and intention to make this as pleasant as possible for all concerned you will all enjoy lots of good years ahead.

 

 Alzheimer's is a disease where communication between the affected person and loved ones (or any one) becomes altered. People living with ALZ do not become less intelligent or disappear. It is a condition which progresses towards death, but for a long time it is just about not being able to store memory of immediate actions and other cognitive changes which may or may not be explained in words others can understand - such as visual distortions, hearing loss/changes, sleep disturbance, unpleasant reactions to drugs, and so on.

 

The living environment that accommodates the growing losses with peace and happiness gives the patient the best life possible. There are books on learning to communicate (Learning To Speak Alzheimer's helped us most), online videos, tons of information out there - but each journey is unique. Money and outside help available alter the way each deals with their care giving conditions.

 

Please set your course of action to assist your loved one towards simply  having good days. The way to that may seem obscure right now but without a destination heading of love and courage the path can be extremely unpleasant. Every "bad day" is a chance to learn what went wrong and improve. Start Fresh over and over, forgive quickly, do not get involved with people who do help achieve pleasant days.

 

There will be new treatments soon. Expect to be overwhelmed and expect to recover from that often. The final stages can be helped with Hospice. Little difference at end between ALZ and any other condition which ends our lives.

 

I do not believe we lose our conscious awareness ever. The ability to find the right words goes, but we patients become more attuned to the emotional energy of those around us. We need more time to do things, we get mixed up, we get overwhelmed by rapid speech, questioning us, scolding, too much noise, and often suffer from boredom.

 

Resolve early on to do your best but not expect perfection. It is a chance to learn to calm your own worries, to be an escort not a warden. Lots of information at Alzheimer's Reading Room blog.

 

Try not to be overly influenced by people who are miserable. You do not owe troublemakers any space in your lives.

 

love and courage


storycrafter`
Posted: Sunday, December 28, 2014 8:04 AM
Joined: 12/17/2014
Posts: 1123


Welcome to the new people. I found this group a couple weeks ago or so, and found it invaluable right away.

 

I'm hoping this overwhelmed phase will be less intense as I educate myself about the situation and as we get all the appointments in that lead to a definite diagnosis, which will lead to the steps needed for treatment and coping.

 

Iris and Altz+, thank you for all the good info. I'm sure you are right about the attitude with which we approach things.

 


TrickB
Posted: Sunday, December 28, 2014 3:32 PM
Joined: 12/24/2014
Posts: 9


Thank you.  I guess it's the initial shock of the diagnosis. I have so may questions. Hopefully, the doctor will be able to give us some additional information next month. I just want to be sure that I do everything possible to make sure he is taken care of. I'm learning to make the most of everyday and to live one day at a time.
TrickB
Posted: Sunday, December 28, 2014 3:33 PM
Joined: 12/24/2014
Posts: 9


Thank you
Iris L.
Posted: Sunday, December 28, 2014 3:39 PM
Joined: 12/15/2011
Posts: 16569


Trick, if you visit the Spouse/Partner board, you will find others in your situation.  They will help you.  If your husband can use the computer, please invite him to join us patients on our board. 

 

Iris L 


lynne6
Posted: Monday, December 29, 2014 1:29 PM
Joined: 12/29/2014
Posts: 1


my husband was diagnosed at 55. It seems each day is a realization of how horrible this disease is. It is pervasive, infiltrating every corner of our lives. I feel his every step is an obstacle course. One hard part is that there is no hope, we can go for second opinions etc, but the answer is the same and the outcome is the same.

Have you noticed that his behavior is like a young boy sometimes, insecure, odd questions?

I am overwhelmed and each day brings a different set of questions and issues.


Iris L.
Posted: Monday, December 29, 2014 2:21 PM
Joined: 12/15/2011
Posts: 16569


Welcome, Lynne.  We patients on this board with early stage Alzheimer's disease, early stage FTD or other early stage dementia or cognitive impairment, don't feel like there is no hope.   

 

We want to be treated with dignity and respect.  Dealing with our changes and family members is difficult for us.  We both have a lot to learn and a lot of adjustments to make. 

 

If your husband can use the computer, please invite him to join us patients on our board.  We want to meet and support him. 

 

Iris L. 

 

 


Athos3m
Posted: Monday, December 29, 2014 6:33 PM
Joined: 12/7/2014
Posts: 49


alz+ wrote:

My advice as a former caregiver to my Father and now as a patient is focus on quality of life. 

  

Each person travels this path differently. The illness has a horrific mystique around it and in my world that sets up everyone for stress, panic, anger and depression. 

  

So far the world wide count on dying for humans is still maintaining at 100%. Although it is a shock to learn someone is going through this as a younger age if you start out with a good philosophy and intention to make this as pleasant as possible for all concerned you will all enjoy lots of good years ahead. 

  

 Alzheimer's is a disease where communication between the affected person and loved ones (or any one) becomes altered. People living with ALZ do not become less intelligent or disappear. It is a condition which progresses towards death, but for a long time it is just about not being able to store memory of immediate actions and other cognitive changes which may or may not be explained in words others can understand - such as visual distortions, hearing loss/changes, sleep disturbance, unpleasant reactions to drugs, and so on. 

  

The living environment that accommodates the growing losses with peace and happiness gives the patient the best life possible. There are books on learning to communicate (Learning To Speak Alzheimer's helped us most), online videos, tons of information out there - but each journey is unique. Money and outside help available alter the way each deals with their care giving conditions.
 

  

Please set your course of action to assist your loved one towards simply  having good days. The way to that may seem obscure right now but without a destination heading of love and courage the path can be extremely unpleasant. Every "bad day" is a chance to learn what went wrong and improve. Start Fresh over and over, forgive quickly, do not get involved with people who do help achieve pleasant days. 

  

There will be new treatments soon. Expect to be overwhelmed and expect to recover from that often. The final stages can be helped with Hospice. Little difference at end between ALZ and any other condition which ends our lives.
 

  

I do not believe we lose our conscious awareness ever. The ability to find the right words goes, but we patients become more attuned to the emotional energy of those around us. We need more time to do things, we get mixed up, we get overwhelmed by rapid speech, questioning us, scolding, too much noise, and often suffer from boredom. 

  

Resolve early on to do your best but not expect perfection. It is a chance to learn to calm your own worries, to be an escort not a warden. Lots of information at Alzheimer's Reading Room blog. 

  

Try not to be overly influenced by people who are miserable. You do not owe troublemakers any space in your lives.  

  

love and courage 



Athos3m
Posted: Monday, December 29, 2014 6:48 PM
Joined: 12/7/2014
Posts: 49


Sorry I messed up the previous post trying to transfer a quote.  I found some clarity with the passage from Alz+ regarding setting our course of action towards helping our loves ones towards having good days and consciously deciding to start fresh over and over (paraphrase due to my poor tech skills).  

This is why I read through these boards… for clarity, inspiration, focus.  It helps me be a better husband and partner.  It gives me insight into potential ways to offer help and support and possibly avoid potential pitfalls along an already difficult path.  Thank you Alz+ and Iris for sharing your thoughts and experiences.  


Amy R
Posted: Monday, December 29, 2014 7:56 PM
Joined: 12/11/2014
Posts: 34


I understand how you feel first hand. My husband is 51 and I am 42. We have a young child and I work full time. My husband was diagnosed last year but having symptoms for several years now. We just thought it was stress from losing his job at first. After seeing 2 Neurologists, neuropsychologist, endocrinologist and having an MRI done, he was diagnosed with Early onset/younger onset Alzheimer's. He has Dementia now and does ok on a daily basis but often says strange things and his personality has changed some. He believes the things he says makes perfect sense and they may in his mind but when they come out they don't. He no longer drives per the advisement of his Dr. He gets overly emotional at the most trivial things. Some of the time he can be reasoned with and other times not so much. He doesn't have the capability to understand many things. He does take Aricept and Namenda. Drs usually won't talk about the benefits of vitamins but I've read a lot about how they do help Dementia patients. I have my husband take higher doses of Vitamin E, D3, B12, and a multivitamin. I could tell a difference when he didn't take the for a few months. He also goes to the gym with me 3 times a week and is involved in everything our son does. Being around people helps. This whole situation sucks but I figure it could always be worse .

 


Amy R
Posted: Monday, December 29, 2014 8:12 PM
Joined: 12/11/2014
Posts: 34


Yes, my husband acts the same way. you are not alone!  There is a caregiver message board also.