My name is Mary and my DH was diagnosed last December with EOAD at age 52. I am 39 and our daughter is 8. It was a devastating blow to us but not too surprising. Both his mother and brother passed away at 52 from Alz. We were hoping that it has bypassed him...no such luck. A couple of his doctors think that a serious car accident he was in in 2005 may have triggered the AD because he only really started to show marked AD symptoms about 6mos after the car accident. He is doing well on Exelon and Namenda. He also takes Depakote for his epilepsy that also helps with his paranoia and paxil for depression. So far, nothing for me...who knows how long that will last. Our daughter amazes me everyday with how patient and protective of him she can be. It's a shame she is being forced to grow up so fast and help take care of Daddy. I am looking forward to getting to know all of you and learn from you.
Welcome to my website. I am sorry any of us is facing this disease, but I am especially sorry for younger spouses like you. There are many in your age bracket who come to this website for support. I am sure you will be hearing from them, as well as the rest of us.
On the left side of the website, there is a topic called "Alzheimer's Articles of Interest". Click on that, and then scroll down to the artice - "Help Children and Teens Learn to Live With Alzheimer's". You may find some information in there that will help your daughter.
You can also click on "previous blogs". Scroll down to #14 and #15. The first is a Blog about EOAD, but it has an error in it. It says that Early Onset is before age 50. It should be age 65. #15 has the correction in it.
You may also use this as another resource - "contact Joann Webster at the Tulsa/OK Alzheimer office. She is Early-onset Coordinator and there is a newsletter along with email connections to others in the same boat so to speak. There was an early onset conference in Tulsa in early June. Her Direct Line (918) 481-7746 TOLL FREE 1-800-272-3900 and email joann.webster@alz.org. She is a voice at the National Alzheimer Association and works very hard to get the word out."
Welcome. I'm Diana. My Children are 26, 25, 17, and 15. I think my husbands AD started when my younger ones were around 8 and 9. I feel for you and your daughter as I know the adjustments we and our children have to make. You will find lots of friendly advice and affirmation.
My name is Leighanne. I'm 38 and my husband is 45. He was diagnosed this year with AD. We have a 12 year old son and a 9 year old daughter. My husband also takes Exelon and Namenda. He is on the Exelon patch. He also takes trazadone (an low level anti-depressant) to help him sleep, blood pressure medicine, and cymbalta.
He has always suffered from depression so for almost a year this is what he was being treated for. He had major abdominal surgery in June of 2006 and that is when AD really reared its ugly head. Looking back, he was probably in the early stages prior to the surgery but he was able to cover it up. It became really obvious after the surgery.
He's not working now. There have been so many changes in our household that everything seems to be a blur - but at the same time it seems to have gone by in slow motion.
Welcome to the boards. I hope we can all help each other through this.
I think I talked to you last year on another forum. I kind of lost touch there for a while, I guess I was floating down the river of de-nial. I am 49 and my husband is 61. He was diagnosed last year at this time, but then the neurologist thought it was thyroid related. After alot of tests and drs appts, we are back at square one. Meanwhile, he has gotten a little worse. Cant' work, can't drive. Thank God he is okay at home by himself at this point.
My name is Pat, first time writing in. I have been reading and feel so blessed to find this site. My LO is 61 and I am 56. My LO had been diagnosed w/alz in 2004. He had 8 siblings total and 3 to die already w/alz and his 2 remaining brothers have been diagnosed with alz. Looking back, his parents both seem to have had it. We have been also married for 37 years and I feel like I lost my best friend. My LO is on namenda and aricept, and seems to be in the moderate stage, but at times does things to resemble severe and mild. My heart goes out to these young families because I raised my two children because of his early heart diease and I know ALZ is alot worst . More later, LO is awake. Thanks again Joan for your contributions helping us cope.God Bless You for this.
I am so sorry your husband's family has had to go through such torment. There are many spouses who write on this forum who have experienced "familial Alzheimer's Disease). It does tend to run in families, particularly the Early Onset type. Early Onset is defined as diagnosed before age 65, but there are many who are diagnosed much earlier.
We all relate to "losing our best friend". It is the worst part of this disease, and the part I struggle with every single day. I invite you to check out the "previous blog" section on the left of the website. I know you will find many topics to which you will relate.
As to the "stages" - it seems like the game "hopscotch" to me. One minute there's one foot in one stage; another foot in another stage, and the next minute it changes. It is very dificult to keep up with, and you never know what to expect.
I feel so grateful that you and all these wonderful people are sharing on these discussions. So many topics; useful knowledge and so many similar things I wonder about but not ??? for Drs. All for now; plenty more reading to do.
This is a sharing place as we all are facing this horrible disease. It would be hard dealing with this with a child, Mary. There are several on the board who have children and dealing with Alzhiemer's at the same time. My heart goes out to you.
Pat, my husband was diagnosed at the age 59 with early on-set six years ago. He is the youngest of eight. He has lost three siblings to AD, with the lastest brother only a few weeks ago. His mother did not have AD, but his father died at the age of 55 and do not know if he had AD or not. It does take your best friend and so much more at such a young age. We both felt so cheated and angry. He is in stage 5/6 now (depending on how things are going that day) and is no longer aware of what is happening to him.
Thank you Joan for this wonderful place for sharing.
Welcome to you younger Caregivers. I honestly don't know how you do it when you have young children. You'll learn a lot here and make lots of new friends.
My heart goes out to those of you whose LO's have been diagnosed with EOAD, and especially those with young children. My DH's Dad displayed dementia in his 40's, when S. was a teenager. His Dad died in his 50's; S. was diagnosed at 59. Seeing his Dad/family suffer because of the disease made a distinct imprint on S. and affected him greatly for the rest of his life. He always thought he might inherit the disease and this possibiity affected every decision he made. I can tell you that one of the smartest things my MIL did was to arrange for S. to go out of town during summer vacations, staying with relatives. It removed him from the household during a time when his Dad was really going downhill, which was a good thing. Being a teenager is hard enough, without having to witness the decline of a parent due to AD.
My AD'd wife told me that Woody Allen was sitting with us at yesterdays breakfast. She got that idea because there was a full page picture of woody on a special section of the WSJ Saturday- some of you may have seen it. My wife again told me that she and woody talked for about 1/2 hour. That was probably a better discussion than any she and I have had in the last 9 months.
She started to throw/give away a lot of her old clothes. It helped because when she is moved to a care home, she'll never see or wear them any more.
We haven't been to a restaurant in over 4 months- she can't tolerate a ride longer than 15 minutes- probably less now. When I foolishly told her, and we both observed the same food selections for dinner in our refrigerator, that it's too bad we can't go out to a restaurant for a change, she said why not. It was a circular discussion that we both forgot and ate our humdrum dinner tonight.
I'm awaiting the next radical change in her behavior. She has been on a plateau for about 45 days, excluding the woody allen delusion.