My husband is 58 years old - he was diagnosed at 53 and started showing symptoms at 51 - he has shown a decline in many areas - but he is still physically healthy - I have do everything for him helping dress, fixing food, bathroom etc. He is unable to understand how to do any household chores without my help - and he is unable to speak - only one or two simple words -he can not process what I say to him as well- all very tiring - does anyone have any idea how much longer this will go on- Thank you
Dear Katie, I'm so sorry for you. I wish I could tell you how much longer, but unfortunately no one can really answer that with any certainty. My husband is 75, diagnosed several years ago, but I'm sure one of the other members of this site with an EOAD spouse will be along shortly to tell you of their experience with this dreadful disease. If you are a new member there is a wealth of information here. We are all in the same position, no matter what type of dementia they are suffering from. It is very tiring. Hang on. My heart goes out to you.
Hi Katie, My husband was diagnosed at 49 years old...and just passed away in January at age 56. The way in which you described your husband sounds all so familiar. I have two friends in my town who also had/have husbands with EOAD. One husband passed away after 7 years...the other man is still at home...7 years into it. You just never know...and that part really is difficult to accept...it sure was for me. I so feel for you and understand the extreme frustration of it all. Hugs and love to you. Leigh*
We are three and a half years in. I feel like DH had this for many years before the dx. He is on Hospice now and it is just a matter of time now. He has had massive weight loss over the past 5 and a half years. It is just a matter of time now for us. My DH is at the stage your DH is at. So sorry it is so hard for you. Sending you (((hugs)))
Katie, welcome to the site. I am sorry you have to become a member due to your husband's dementia, but you will find several other members whose spouse has early onset dementia as well as a wealth of information about caregiving for a spouse with dementia.
Unfortunately none of us knows how long the journey will be and when it will end. Many are several years into caregiving and others lost spouses after a few years. I think the not knowing what's ahead and when is very emotionally trying on those of us caring for a spouse, but there's just no way of knowing. My hb is now 63 and was diagnosed at 58 with FTD (frontal temporal dementia). He is physically quite healthy, has a good appetite, but needs assistance with all ADL's and is losing his speech. According to the statistics the average length a person has dementia before death is 8 years after the diagnosis. Of course since that is an average, many live fewer years and many live longer.
So sorry you're going through this struggle, but you will always have support here and someone to give advice when you need it or just listen when you think you can no longer be a caregiver.
There are a few rules of thumb about life span and dementia. But they vary so much that they may or may not apply to your husband.
I have heard from different sources that younger people see faster progression than older people.
FTD is faster than Alzheimer's. however, phenotype FTD is slower and more like Alzheimer's in that way.
Estimates are from time of dx to death. People get dx'd at different stages so it is hard to from from the dx date. FTD is estimated to be 2 to 10 years but I've seen other estimates and know people beyond the 10 year mark. Also, people with FTD tend to be younger than those with Alzheimer's. And since a dx may prove to be the wrong type of dementia on death estimates are even harder to make.
Well, my late husband was diagnosed with AD at the age of 49, but looking back I can see signs before that. He died at the age of 61....so he lasted for well over 12 years. He was as healthy as a horse so there were no other diseases that would have taken him sooner.
Ahhhh, Sandi* we sound very similar. My husband was as healthy as a horse too. He had terrific blood pressure, etc... The damn, crazy disease called AD or FTD or whatever was just to flipping strong...they are no longer here in the physical presence...but they are still with us all the other ways around. Love, Leigh*
My husband first developed frontal temporal dementia (FTD) in his late 50s. Only recently (within a year) he was "officially" diagnosed with Alzheimer's disease. I have also wondered what the progression is for future financial planning. In so many words I was told by his neurologist it "varies from individual to individual"
I am seeing a very quick decline since our move across country 10 months ago. At that time my husband was doing much physical volunteer work....reading 2-3 books per week, hiking etc. Today he can no longer operate a motor vehicle, has problems walking, and only flips though magazines. The decline is rapid.
I am sorry that you are struggling. However, you are at the right place for support, love, and a wealth of information.
I noticed things were starting to be not right when my husband was still in his 40's. Because of his general health, educational and career background he was considered somewhat a medical mystery. His dx was FTD in 2006 and he died in 2012. Six years almost to the day.
lullie- thank you for your kind comments on another thread- I should have thanked you sooner, but I appreciate it very much.
Welcome Katie I have always wondered how long this will last. My DH started showing signs at 52-53 years old. He is now 61. We had a diagnosis of MCI in 2005 and alzheiners the beginning of 2007. So it has been 8 years. I would say my DH is stage 6a,6b,6c at different times. I was told that it goes faster when they are younger, but do not believe it. I am very tired. I am so sorry you had to cone here, but this is a great place for friends and information. I am 51, so feel like my life has been cut short too.
Welcome Katie---I agree there is no way to know how long this will last---my husband diagnosed @ 53, showed signs earlier, and is now 61. He is at home with full time caregivers, but I plan to move him into a nursing home in the fall, in conjunction with selling my house now that my youngest graduated from college. I feel lucky to have able to keep the house and him at home, but it is time. FYI, he is definitely stage 6, and too advanced for any dementia specific facility with activities, yet he is not bedridden, in fact, he and his caregivers usually walk in the neighborhood twice daily, but not in this Texas summer heat. He has not spoken in over a year. But healthy appetite and no major medical issues, other than the dementia, which is either Alzheimers, FTD, or a combination. The neurologist finally admitted they were not sure in his case. Best of luck to you---horrible horrible disease!
Thank you all for your care and concern. Your words help me know that I am not alone - I was only 48 when this all began - I am now 54 - I am very lucky to have family who help at times but I am the one who is living this - you do not know what it is like unless you are actually living it - There are many times that I lose my patience and feel bad about that - I am sure you all understand this feeling - I feel for all of you and truly understand what you are all going through -
Welcome to my website. I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
You and Julie, another new member have the same double whammy in that your husband is so young. He would come under the category of EOAD ( Early Onset Alzheimer's Disease), which is now often called Younger Onset Alzheimer's Disease. This comes with its own set of challenges - loss of work, insurance, difficulty finding correct diagnosis, etc. On the home page - www.thealzheimerspouse.com - on the left side, there are sections on EOAD, including an excellent guide to Early Dementia.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience".
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
As for how long this will go on, no one knows. Evidence does point to Early Onset progressing faster than late onset, but as with everything connected to this disease, it is variable.
Hi Katie welcome to our site. You will find just an answer to just about anything here. And remember that no one will judge or scold you when you need to just come on and cry. There were times in the middle of the night when I could not stop crying, I posted, and right away some one would come on to comfort me.
My husband is also early onset, though, not as young as yours.! He was 60 when diagnosed, and is 64 now. His progression has been very fast and I was basically forced to place him in a good Adult Foster home, 6 months now.
Many of us here know that in the beginning can be one of the hardest times, having to digest it all, and accept it. Yes, no one can truly get it, unless you are in it. The pain of taking care of ANY ill person is a huge challenge and heartbreak, and taking care of an Alzheimer spouse is unique and so deeply hurtful. Somehow we get through the bumps though.
You are right I did access this sight in 2009 and have not been here for a while - Sometimes I feel like talking about it so much is too over whelming - I am surprised that some of you remember me - Thank you for your helpful advice -
The length of time someone "normally" lives with AD (or another dementia) is complicated by the fact that it is a disease of aging. Statistics tell us that the 'average' age of onset is 73 (however since their is no standardized Dx criteria I have no idea wher that comes from)
People arrive at old age with many other diseases and conditions and when somebody dies it is not well documented whether they died WITH dementia or FROM dementia and this affects life expectency. (recent study - AD people dont have cancer and cancer people dont get AD . . . ?)
Younger folks have younger lungs and hearts and livers etc. so they might be expected to live longer. . . . ?
My wife was always "obese" (over 300 lbs) she had mild HTN and had a few polyps removed. (her dad had cancer) She was constantly told to reduce her weight to avoid early death.
Afther her AD Dx I stopped all BP meds and deffered all PAPS and mamagrams. I gave her as much sweets and ice cream as she wanted. Her weight stabilized (maybe went down?) Her BP became normal and on autopsy she had NO HEART DISEASE. She died at 63 and physically she cuodda lived another decade(!)
Moral of the story: Ya never know and ya can never predict in this crazy disease.