Alzheimer's hits when you're only 50 years old

2/26/2011

This story comes to us from Sandy Gillaume. We normally solicit stories of human triumph that allows us to smile, but I realize fully that before one can claim victory and find peace to smile about, one usually goes through turmoil and struggle. Sandy, our prayers and thoughts go out to you and your husband. Keep strong and let us know how you are doing.
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My story begins back at the end of January 2010. That is when my husband was diagnosed with early onset dementia. He is only 50 years old. The doctors that diagnosed him said it was related to his alcoholism and hypertension. I had a really hard time dealing with this diagnosis, but I knew that Don was not the same man I had married 22 years prior. I knew that he had been having TIA's for several months. I could see the effects of them. I knew there was something wrong, but could not get him to go to the hospital or doctor. His excuse for many years was he did not have any insurance and he flat out refused to go. When I finally got him to the ER his blood presssure was off the charts and he was a very sick man. He spent 6 weeks in the hospital, detoxing and going thru some real changes. He was totally incontinent and just a completely different person. He was out of control. He kept trying to break out of the hospital. The kept him in a bed with a locked net over the bed. When the hospital figured he was ready to be released, they placed him in a healthcare facility. His Dad, sister and I had been checking out facilities, but then one morning came and they called and said, "He is being moved today." We had no choice. He is now in a different facility because the first one was horrible. They didn't even take care of him. I will not and cannot elaborate on it. Since he has been in this one, he is 100% better. He is no longer incontinent and he thinks he is ready to come home. I am just totally baffled and don't know what to do now. I am so confused on where do we go from here. All I have read tells me that dementia gets worse, but he just doesn't seem too bad. I sure could use some advise. Is there anyone out there that can help me????

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upon email correspondence, this is what I received from Sandy.
Hi Sharon,
Thank you for replying to me. I appreciate your acknowledging me.
I would appreciate it very much if you posted my story in the proper place. I would never be able to write it again. I, too have brain damage, due to an AVM bleed back in 2001, so my short term memory is horrible.
Please let me know when you post it and how to find it.
thank you so much,Sandy Guillaume
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2nd email exchange with Sandy after I informed her that her story was posted on the website.
This is a reply from Sandy.

thank you so much.

I look forward to hearing from anyone.
I need support desperately. Hopefully people will contact me.
thanx again,Sandy
Sdartz@aol.com this is Sandy's email address if you want to send her a direct email.

5 Comments

karen

2/27/2011 06:30:08 am

It is without a doubt one of the most difficult things to deal with in life at any age. This disease is devastating to everyone involved. That being said. I would advise that if it gives you peace within and you can financially afford to keep your loved one with you.. please do so.. if you can honestly say that you will KNOW when it is time to go into a facility.. After working closely in the Nursing Home industry for 16+ years, I have found that this is the decision that is most neglected. Well, two things, using and reaching out to all of the resources that are available in most towns and cities that are so very important in keeping yourself and your loved-one as healthy as you can while still at home. And the most important one.. NOT letting that important decision of having them settled into a better setting before you and they are at your wits end. Unfortunately the caregivers are the ones who are most at risk if they do not realize and act upon this soon enough. Alzheimer's Disease robs us of precious time with our loved-ones .. but when those afflicted with it enter into the level of their disease that affects most memory loss.. let this be what gives you the freedom that you have done the most you can and loved them as much as you could.. after this they DO NOT know.. it is the person that you look at.. but they are not.. Stress, fatigue, ignorance and acceptance .. We as a society are still trying to catch up to the finality of this disease.. we are told someone has cancer and have neat little check lists that we go through the disease process with.. we even know where we are going in the event that all that was done isn't enough.. with Alzhiemer's there is still the idea that it is not happening.. it JUST cannot BE.. because often, the person's body is the same for years and years.. the eyes.. the hair.. the very way they smile.. and yet... THEY... are already gone.. Do what you can and give yourself the gift that when it is time.. you'll accept that that is all you can do.. at this time unless you are very well to do or have unlimited access to help and assistance.. the average family is not equipped to handle this disease to the end stages.. GOOD LUCK to you... and take care.

Diane

2/27/2011 07:12:05 am

Sandy,
My first question would be what do the Doctors say. Do they feel he can go home. I ask because after reading your story I went online and was reading about Alcohol dementia and the cause and treatment and they do say it can be reversed in some cases.
If I was you I would talk to the Doctors and see what they think and second if you take him home can you care for him and what kinda care will he need. Make a list of question you need answers for and also how does your family feel about it. Remember you are never alone. If you need to talk you can email me me cleve1d@verizon.net
I know I was not much help but have Faith and you will do the right thing.

Diane

JANE

2/27/2011 07:26:25 am

HEY SANDY,
MY HEART GOES OUT TO YOU! I AM A NURSE IN A LTC FACILITY. MY OPINION IS...UNLESS YOU WANT (AND ARE ABLE) TO GIVE 100% OF YOUR TIME TO YOUR HUSBAND, IT IS PROBABLY BEST TO LET HIM LIVE AT THE FACILITY! VISIT OFTEN!!!
WHAT YOU HEARD ABOUT THE DEMENTIA GETTING WORSE IF VERY TRUE...IT NEVER GETS BETTER! HE MAY HAVE SOME BETTER DAYS THAN OTHERS, BUT...
I WISH I HAD BETTER NEWS TO SHARE WITH YOU! JANE

Sandy Guillaume

2/27/2011 10:24:42 pm

Thank you all for your replies. I am unemployed right now, but am actively looking for a job. I have always worked, at least part time throughout our entire marriage, so devoting myself fulltime to Don is the main reason the hospital placed him in a facility to begin with. (I was employed back then) Our financial situation, with both of us on SSDI deems it necessary for me to work!! We still have one child living at home full time and our daughter and granddaughter are here until she has her baby, which is any day now. I have been helping them out since September. I lost my job in October when I broke my shoulder. (but that's another story)
Why does my life have to be "Murphy's Law" ???
Again, thank you all for your input. I appreciate it so very much.
hugs-Sandy

Sandy

4/7/2011 12:53:02 pm

We are going to the Neuro doc tomorrow..4/8. It has been a month since Don has had his MRI. We will find out exactly what the doctor thinks is wrong and how he feels what really caused the dementia and if he should be allowed to come home or not.
I, finally had a conversation with the nursing home doctor and he does not think Don should come home. He had all kinds of reasons. I am so totally confused on the whole issue.
I started college a couple weeks ago and I am trying to better myself to get a better job at this stage of my life. (I am 62 and it's a real adventure)

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Author - Sharon Kim

My mother was recently diagnosed with Alzheimer's. It took our family 3 years to get proper diagnosis. My sister and my father who are the primary caregivers for my mom are going through extreme challenges dealing with the impact of this disease. This is what inspired me to create and dedicate 4URLOVE to all the caregivers of Alzheimer's patients in the world for their commitment, love, sacrifice and unfathomable patience.

Alzheimer's hits when you're only 50 years old

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