I was so relieved to find this site...My husband was diagnosed with Dementia/EarlyOnset Alzheimers in November of 2012. He was 53 at the time, turned 54 in February of 2013. Although his diagnosis is Dementia/Early Onset Alzheimers, his doctor's say it is called that because of his age, however, they say his condition is in the latter stages and have informed me that medication is truly not an option, they felt that if it had been caught sooner, medications may have helped, because we all know there is no cure but I feel as Joan does, a widow, for the 2nd time around, my first husband, whom I was married to for many wonderful years, passed away at the age of 48, of a massive coronary, leaving behind myself and 5 children. In the blink of an eye, one's life can forever change, as mine has for a second time.
I met my second husband Colin in October of 2008, had known of him for 30 plus years and we married in June of 2012. Sadly, he does not remember when or where we got married, when asked, he answers sincerely," I think we got married in 2005.
He sits for hours and stares at the televison & just smiles, he probably says 20 words, the entire day, really only speaks, if I start the conversation and then answers in one word replies. He has lost interest in all the things that meant so much to him, he loved music, played bass guitar and electric for years, stamp collecting, etc, etc, etc...
I have cried for hours at a time, not crying for myself, but more for him. In "his mind", he thinks, there isn't really anything wrong with himself, even though he has been told & it has been explained to him by his doctor's what his condition is. It saddens me that this disease could take such a young man so full of life & so vital. All that is left truly, is his beautiful smile and many happy memories for me.
I truly did not have time to grieve at the onset of being told what was happening to my husband because there were to many important things that had to be done. I was advised to immediately get Power of Attorney, medical & financial, living will, etc...by the neurological team. I had to find different housing, I had been living in my place for a number of years but now without an income, we would not be able to stay there. I was not working at the time because I had been taking care of his stepmother who also has Alzheimer's. I know it sounds strange that I cared for a woman with the same disease but I have found through my experience, its affects people differently, she was in a different stage and she is 79. His condition is more advanced than hers in many ways. She still will make her own lunch but Colin would not eat at all, if I didn't make it or remind him that he hasn't eaten.
I feel all alone & isolated in dealing with this...I am so very happy that you started your blog because it has really helped me, I haven't really had anyone to talk with, I talk to my children and they feel bad for Colin and for me but as you said, one truly does not understand, unless it happens to them, also you said, no one wants to be around someone who is always crying, it brings them down and no truer statement was ever made.
Colin was told in one breath by his medical team, you can no longer work, drive, etc...his life, as he knew it and I knew it, ended that day! From a man who work an average of 60 plus hours a week, to nothing at all.
I started noticing subtle changes in Colin's memory about a year ago, never envisioned, what I was seeing in him was indeed Dementia/Alzheimers, just thought he was getting a bit forgetful, due to us both getting older, he was working horrendous hours at the time and was beat!
Welcome colin - sorry you have to join us. Early Onset is before 65. I believe the truest Early Onset AD goe fast - probably within 2-3 years. The drugs do not arrest the disease, they only allow them to stay cognitively functioning longer while the disease continues it course. I get so upset with the ads on TV and articles that give the impression it can halt it or reverse: you know the ad- one day grandma is confused, the next day back to normal!
You had such a short time together but you have known him for years and have those memories. I am glad of that.
There are others here whose spouse has gone quickly through AD and they will be along to share with you.
Welcome colin, Your story sounds so much like mine in so many ways. We are early onset also. DH was dx three years ago at age 58.We are now in Hospice. He also was told of the dx, retired from his job of 30+ years and told he could no longer drive. So many changes. My heart breaks for you. Sadly my DH no longer knows who I am after almost 33 years of marriage. But he depends on me for everything and gets upset if I am not around. I am glad you found us. Sending you many ((((hugs))))
If it helps, we have been on meds (Namenda, he could not tolerate any others) from day one and they did nothing to help us.
I want to thank both of you for your responses, it helps me to be able to share and get your input. I wasn't willing to to just give up on him so I have done a whole lot of researching about the disease, as I am sure both of you did. I did meet a doctor from Poland, who now resides and practices medicine here in the states and we sat for quite a long time discussing Colin's condition, what tests had been done, etc, etc.. and she told me of supplement that has been used in Europe for years & has proven to be very effective, she stated when she was practicing medicine in Europe, the big pharmeceutical companies from the US were pushing Aricept & Namenda to them vigorously, she said she tried both of t them on her patients, with NO positive signs of clarity/ cognitive function improving...she said to me right off the bat, I hope they are not insisting he be put on Aricept, Namenda, she loudly said, "no,don't let them offer him them, they're GARBAGE!!! but she did tell me of a supplement called Vinpocetine. She stated she has seen positive results with it, so far Colin has been on it for almost 2 months and I have seen little changes, she says it takes a full 90 days (10 mg X3 daily). I guess I am grasping at straws but doing nothing isn't helping my piece of mind either. Both his stepmother & Collin are taking it and I honestly HAVE seen changes in his Mom, she use to repeat the same thing, over & over again and doesn't now, she seems to understand what is going on around her and is communicating more.
My DH has early onset also. He was dx at 50 and is now 58. I have to say that Namenda and Razadyne have helped his symptoms. However, he is progressing and has alot of difficulty with language now. My dx is very aware of his deficiencies. But that is not true with everyone.
It must be so hard to be losing a second husband. I think we all have spent time crying for our loved one and ourselves. It can be a long grieving process with so many losses along the way. This group will be a great support to you.
Do any of your loved ones with AD have hot spells, my DH has had it happen several times now...he'll look at me me and ask if it is hot in here, I, in turn will look at him and see the sweat on his face, under his nose, forehead, etc..to be quite honest it frightens me every time it happens?
Colin, Welcome. No, my husband doesn't have hot spells he's cold frequently. Not to alarm you but he could be having cardio problems. Have this checked out immediately please
Hi Colin, and welcome. My DH was diagnosed at 58, we're 9 years in. Glad you found us. This site is a lifesaver! I agree with Lulliebird. This could be cardio, so you might want to have it checked. My DH has heart issues, and is frequently hot (and cold for that matter).
Welcome, and I am glad (considering the context) that you have found this forum.
My husband was dx in his mid 40's. A lot of differing dx; mostly because of his age. Within a year it was defined as FTD. In retrospect it seems to match. He got a lot of medical attention because of his age.
The heartbreak is surreal. He was thought to "do so well" because of his education, career pursuit and other skills measured over the ensuing years.
Nevertheless, he died after 6 years of the dx. He died bewildered, angry, and more than confused. For the three years following this dx he was able to work. When that stopped his delusions started. While I never had help in the house, I consulted so many legal and medical professionals.
He was cheated out of so much. He had prepared so well for the career he lost- not only the tasks of the career itself but the contributions he made to his community.
His meds were (all generic): aricept, keppra, ativan and a couple that just did not work- depakote- which increased delusions and a few more I can't remember.
I don't want to say too much- as Wolf said there is the stage when you are first finding out. He further said (paraphrasing) there is the stage of care at home, the stage of facility care and the stage after death, which is where I am.
As has been said here, it is what it is. I will help you in any way that I can.
My wife got Sx at age 55 was out of work at 57 and now at 62 walks around with a slumping posture and speaks in gibberish. She answers to her name and constantly calls my name but doesn't really know who I am. My 80 y/o parents help and we have paid caregivers so I can work and she calls calls all of them using my name.
Younger (early) onset is SO STUPID a word. I wish the AD community would stamp it out! Does everyone forget that Dr.Alzheimer's original patient was 50 years old?? There have been many people here who have been told that their family CAN NOT possibly have AD because they are younger than 65 . . . sheesh . . . .
We have used Aricept and Namenda and about 2 years ago I could see a big difference if she missed her Aricept dose. This past month I stopped the aricept because of bed wetting and I have not seen any difference. I have continued the namenda cause . . . . ??? I donno why not just keep giving it?
Our problem is crying also. She was ejected from 3 day care settings because she cries continuously and needs one on one attention (constant hand holding). She is on several anti depressants and the Depakote but in reality it seems to come & go in its own time. ESPECIALLY AT SUNSET!!!! OMG, these longer spring/summer days are horrible!!!
As much as I hate to hear her cry I console myself that AT LEAST IT IS NOT VIOLENCE! Uncontrolled tears is much better than uncontrolled rage.
As you are seeing there is a lot of company around here. (sadly) Welcome to the club.
My DH's condition is not that advanced yet, just alot of repeating the same things over & over, forgets where normal items are: like dishes, cups, bowls, etc...still dresses himself, sometimes shirts are buttoned wrong, two different kind of socks are put on, and when brought to his attention, he just smiles and basically doesn't think it is a very big deal. Very quiet, as I stated originally, says very few words throughout the day, pretty lonely world for me however, with no one to talk with-he was always a quiet person by nature but now it seems he is just kinda lost in his head. Very sad! I feel relieved & grateful that I now have this site to go to, to be able to ask questions, get the input of other's and can ask advice if needed, etc...
m-mman, your comment about early onset prompted me to google Dr Alzheimer (I don't know why I haven't done this before now) and it was as you said, the first case that was named after him was indeed, only aged 50 - 51. It was quite interesting to read his life story.
Yes the first identified case of Alzheimer's disease was a younger-spouse situation. Somehow medical researchers had managed to make the (stereotypical) Alzheimer's disease into an over 65, parent/child situation.
The tragedy is that when they redefined it this way they essentially said that it was the ONLY way that AD presented itself. This then resulted in a huge bias on the part of doctors making a diagnosis (it cant happen to younger people) and psychologists defining the caregiver role. (taking care of your elderly parents is 'normal')
When we were first diagnosed, my wife & I went to a program at our local Alz Assoc. to try to learn more about what was coming. The 20 something, recently graduated, social worker who was filing out the paperwork asked about my wife and her statistics and then turned to me and asked if I was her 'caregiver'(!) I firmly told her NO I was her H-U-S-B-A-N-D! She politely said 'Oh, OK' and continued with her form.
She did not get it. I dont think she was herself married and she certainly had no concept of understanding of how AD might affect a marriage. She only knew parent/child AD. This of course was the situation that lead Joan to create this place of refuge and understanding.
Colin---Welcome to Joan's wonderful website, which provides much needed information and a place to vent sadness, anger, whatever. My husband was also diagnosed at age 53, and is now 60. I have been able to keep him at home, but with full time care for the last 2-3 years. He no longer speaks at all, and in the last year or so has developed the "bent over" look so familiar in older people. But, he is still able to take 1-2 walks a day around the block with his caregivers, which I hope can keep him out of the "bedridden" category for a while longer. And while he was on Aricept and Namenda for @5-6 years, I took him off both last year, over the neurologist's objections. I doubted they were helping, and at this point, I have no desire to "prolong" the state my husband is in, nor would he if he knew. My suggestion is that you learn as much as you can from this website and other programs----I am in a "face to face" support group for spouses of dementia patients diagnosed under age 65 through our local Alz Association, and I also attended many seminars in the early years. Very helpful to meet people in our situation also! You are definitely not alone, despite the media and advertisers portrayal of this as an elderly disease.
Colin, quite a few of us on this site have had our spouses diagnosed at a fairly young age. In my case, my wife was officially diagnosed 4 years ago at age 63, but I tried to convince doctors that she was in early stages of AD before he turned 60. Only after 3 years of being (mis)treated for stress/anxiety/depression was she finally correctly diagnosed. As others have said, you have come to the best site on the internet for support, answers to questions, etc. But you should also see if you can find a good weekly support group sponsored by the Alzheimer's Foundation or Alzheimer's Association that is specifically designed solely for spouse caregivers. If you can find such a group as I was lucky enough to do, you will have the opportunity for emotional support and to learn from others who 'get it' ... as well as potential for lasting friendships. As you will discoverif you haven't done so already, a common expression is, "If you know one person with Alzheimer's, you know one person with Alzheimer's." Although most of us find our spouses going through similar declines, those declines are not identical in scope or time. Some deal with heavy duty hallucinations or 'acting out' issues, some don't. Some are dealing with other physical or other health problems. (My wife, for example, also has heavy duty heart issues.) Some decline rapidly, some fall off cliffs and then reach plateaus with their declines, and some decline so fast that they are like snowballs sliding down a mountain. But whatever situation you find yourself in, there are bound to be other visitors to this site who can offer you some advice ... or at least give you their experience dealing with a similar issue. Hang in there, Colin. It's a difficult ride, but this site helps a lot of us.
Hi Colin, I'm so glad you found this site. My husband, Jim, was diagnosed two years ago at 56. It was like a bomb went off in our lives and it took a year before I could speak to anyone without crying.
I'm sorry that this has happened to you both. Like my Jim, your husband seems to be handling the illness well, without much understanding or knowledge that anything is wrong. And I count that as a good thing. As for us, we are the ones who experience all the sadness for them and for ourselves. This site has helped me so much and I hope you find the same help and hope I have.
Hi Colin, glad you've joined this fantastic group but of course I'm sorry you and your husband have to experience this devastating illness. My husband was 58 when he was initially diagnosed with "pre-senile dementia", then with probable FTD a few months later. It has been a bumpy ride for us because he has been very aggressive and physically violent in the early stages. Looking back knowing what I know now, I am sure his dementia began a few years before dx. I agree with Bunnys Lamb, it was like a bomb went off in our lives too-not only because of the dx but the 2 admissions to psychiatric hospitals due to his violent behavior. It was truly a nightmare. I believe the early stages are the worst to deal with due to the emotions associated with learning of the dx and then as the person and you have to adjust to cognitive and behavior changes. Your life gets turned totally upside down. Its been 5 years for us now and although it's still not easy, it's better than it was.