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February 11, 2008

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Karen Sheridan

Hi, I am 59 my husband is 60 . He was diagnosed with Early onset Alzheimer's
almost 2 years ago now.(1st MCI)@58 It seems to be familiar . He had a brother who died at 63 in a memory community in (2005) and his younger sister was diagnosed about the same time as my husband too @57.. In hindsite we discovered this is the 3rd generation with dementia . So we are praying for a cure
ASAP. We are certainly worried about our children .

Jane Viebrock

I'm looking to connect with people in my same situation. And you seem to fit. My husband, 58 in July, was just dx with EOAD in Febr.I'm 56. I'm an RN. I'm not prepared for this. I know about Alzheimer's, but not about EOAD...how is it different,other than age. And of course, there's the children. We live in central Missouri.Found a support group in Lincoln, Nebraska.Haven't been there yet. We trying not to get lost...and remember Bob has a disease, he is not the disease.Help, please. Anything you can offer...anyone.

Mona Johnson

Jane,

I'm sorry to hear about your husband's diagnosis - I know it must be very stressful for both of you. I have some suggestions for you and will contact you via email.

Mona

Sara Spaulding

Jane,
My husband began showing symptoms at 52 and he was finally diagnosed at 58. I'm 11 years his junior and thank goodness gainfully employed. Would be happy to share things we've done to cope. Tough road for all of us. There are people who can help tho. Are you in touch with your local Alz. Assoc? Not sure how to contact you but you can email me anytime if Mona can share my address. Hang in there.

Jan Schumacher

Began noticing about 10 mos ago my husband who usually could add numbers in his head instantaneously couldn't think what 5 + 8 was in a card game. He lost his job about 9 mos ago and doesn't know why. They said he never sent report on time and didn't learn the computer programs he should have in his seed sales position.
Last nite we were playing cards with friends and he couldn't remember who should lead first in euchre, a game he's played since he was a teenager, and he kept leading out of turn. I had already made an appt with our family Dr. Mon 1/5. Hoping he'll really hear me and know where to begin. I am an RN and feel very unprepared for all of this. We have adopted a child and he is only 9, and waiting to get another from Haiti, with a 16 yr old at home as well I need to help prepare for college this next year. My husband just took a new job in another state and we're preparing to sell our house and move. I am overwhelmed!!
I'm also agraid he'll have trouble with his new job after we've moved already and left our friends of 21 years..............
jan

Mona Johnson

Jan,

I hope the upcoming doctor's appointment is a start on getting a handle on all this. No wonder you're overwhelmed!

I'm sure you know there are many medical conditions that can cause memory loss, and many of them are treatable. Even med interactions can be a problem. Sounds like your family doctor is a good place to start.

Take care,

Mona

Jim

Hello, this is the first time I have come close to talking about my wife's condition (I can't talk to a person without crying but I can't help it). She was fully functioning Judge three years ago and had even won award for her work with kids. Then in August of 2006 she was asked to resign or be fired because they were no longer happy with her performance at her job. We had no idea what she was not doing and nobody would even talk to us. And because as a judge she was appointed there was no appeal. In the beginning of 2008 I started to notice something was wrong because suddenly it would take her 5 minutes or more to look at her watch and tell me the time, she couldn't remember the address of the house we had lived in earlier and started repeating question 5 or 6 times in just a few minutes. I scheduled a physical for us both and when the doctor came in to see me I told him what was happening and he gave her a few small test and then sent us to see a Neurologist who did some more test. He told me what he thought was happening and sent us to see a doctor who did nothing but Neurology test and after testing set down with us and told us that Kathryn had EOAD. That she could no longer drive. And suggested that I read a book called the 36 hour day (for caregivers). I read the book the next day. I don't understand how I could let it go so long without know something was wrong earlier. She is now taking three different medicines which do help. She is doing well socially and loves to go to Lodge with me every chance we get and everybody gives her hugs and kisses and treats her great. What bothers me the most is the unknown? Things like how long we will have to enjoy our time together. How long I will be able to take care of her on my own. I love her and do not want her to have to go to a nursing home until it can't be helped. The things I can't find answers to are the things that bother me the most. I am planning to take 4 or 5 small vacations a year for as long as we can. I no longer worry about retirement because from what I understand at about the same time I planned on retiring and us traveling it will not be a good idea to travel. The doctor says she is in the moderate to severe range at this time.

Mona Johnson

Jim,

I'm sorry to hear about your wife, and understand that it's hard to live with the unknown.

Are there early stage support groups available in your area? Both you and your wife might find them helpful. You also might try online support groups, such as the one run by the Dementia Support and Advocacy Network (http://www.dasninternational.org/).

On the left side of this blog, you'll find links to web sites that might also help (scroll down).

Take care,

Mona

susan

My husband was diagnosed with early-onset alzheimer's disease 8 years ago at age 58. The diagnosis came out of nowhere, but in hindsight, I now realize that my husband had been having trouble remembering things for 3-5 years before his diagnosis. He was having trouble at work but didn't know why. He was lucky enough to be able to retire at 53.
My husband did well for about 4 years. He could still drive, ran our errands, went grocery shopping by himself and went for long walks with our dog. One day, I received a call from a neighbor telling me that my husband had knocked on his door and had told him that he was lost and wasn't sure where he lived. This started happening more and more.
About 4 years ago, I began noticing that my husband's gait was becoming slow - he could no longer walk quickly. He became afraid of elevators and turnstiles because he couldn't figure them out. Colorful carpets, tiled floors would confuse him. He lost his sense of depth perception. When in front of a mirror, he began talking to the person in front of him not realizing that it was his reflection that he was talking to in the mirror. There were many times when I would have to ask a stranger to go into the mensroom to bring my husband out - I;d explain that he was probably the guy in the mensroom talking to himself in the mirror.
Eventually, traveling became impossible - our dreams of traveling around the world together cut short.
Even our outings to the mall or to restaurants were cut out.
About two years ago, my husband could no longer stay home alone while I went to work. I found an adult daycare for him and a caregiver to stay with him while I was at work.
My husband could also no longer care for himself. He could no longer bathe himself, shave, dress or eat.
Last year, he could no longer go to the daycare center, because he could no longer figure out how to get into a car. Sometimes it would take me 1/2 hour to make him understand how to bend his head and legs to get into the car.
Last fall, my husband began losing his ability to walk. I hired someone to help me carry him into the shower. I bought a hospital bed which I set up downstairs in our diningroom.
I have since lost my job because my employer refused my plea to allwo me to work from home. It became too expensive for me to hire full-time help for my husband. At $200 a day, it became more cost efficient for me to stay at home and assume the role of full-time caregiver.
MY husband is now in stage 7 and, statistically, has 2-3 years left. I am happy that I can be at home with him and have the opportunity to care for him. Although he has not been able to speak for over a year, I know that he is content and happy to be at home. He still laughs and tries to whistle. He likes to listen to music and likes to have company. And I am lucky to have my husband in my life. I try not to think of the future and take one day at a time.

dd

I am in the process of being tested and possibly diagnosed- I am in total terror- have been noticing things for 5 years- but now I talked about it to doc who sent me to neurologist- makes it all real. I am PETRIFIED of losing my little life - home, friends I've worked all my life for- i do not have a husband and I am just TERRIFIED about how I would survive- Have you had any experience as a single person trying to survive with this?

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