Hubby diagnosed in fall of 2013 with possible EOAD , possibly FTD...at that time the thing that was most notable was his frequent inability to find words for things...he was 62 at that time...since then we have gone through several phases such as seeing things that aren't there, continuing decline in language abilities, suspicion, dressing appropriately is always a guessing game, constant cuing for everything from brushing teeth to eating, you name it he needs to be directed...and now we are totally urine incontinent with occaissional bowel incontinence...his last mmse score dropped from 21/30 in december to 9/30 this month...after looking closely at the fisher scale I've seen mentioned on here, I would say he has gone from stage 3 at diagnosis to stage 7a/b now...he is only 64 for heavens sake!!! This seems like a screaming rate of decline, so much so that seeing as I will probably have a 1 - 2 year wait for LTC, I felt it necessary to start proceedings to have him panelled...He is so quiet, docile and agreeable 95% of the time I am having a really difficult time reconciling the apparent stage with the person I see...Anyone else have a progression like this?
In January 2008 my wife was driving and articulate but a touch off here and there In July 2008 my wife was diagnosed. In 2009 she could still converse and fool people who didn't look closely. In 2010 she lost many skills and forgot who I was. This was the year our friends ran away screaming. In 2011 we spent an insane year at home where I had to block areas with furniture and had zero conversation. This was the year our family ran away screaming.
I put her into a longer respite in mid December 2011. She never came home again and I placed her late January 2012.
From driving and articulate with just little touches off here and there to no skills, no memory, and no speech was inside 3 years. We had EOAD and it never once stopped.
We were diagnosed in May of 2012 and I feel the decline has been rapid. Of course by the time she was diagnosed she was already in mid stages and only just had her 56 birthday. Today would say we are strongly entrenched in about level 6. Our last trip to the neurologist we said no more testing it is only upsetting and what does it do for us? Cannot remember her score but she said she could not remember anything and the Dr indicated he was surprised by the speed of her decline. However I am like you she for the most part tries very hard and is very good, dressing issues yes, forgetting to flush or wash hands of course, but luckily no incontinence. No processing skills left and hard to have any sort of conversation I use to be able to figure out what's she was trying to say but now much more difficult. It seems to me that it Is going so fast.
You are right to start the process we are in Canada and I think you are probably in the states as I don't know what panelled is. But went through this in the last few years with both my in laws and getting the process started is very important. If you wait until you need placement then you may be stuck and have very limited options. I know there is guilt thinking but we are not ready well get over it. I say those words but find it very hard to do myself.
29scorpio, we had a very similar situation - an off-the-charts decline. My husband was officially diagnosed in September of 2012 and he just passed away on May 19th. It was like wildfire in his brain - neither of the medications the neurologist tried did anything and he never did get a plateau period which seems so common for some. He was 62 as well at the time of diagnosis. We had been noticing symptoms for at least a year prior; initially, he was in denial and then after seeing his GP in January of 2012 we had to wait months (this is Canada) for a referral to the neurologist at the local AZ clinic - however, I doubt it would have made a difference in the outcome. We were always told it was AZ but I've wondered if there was some FTD as well. He did have a family history of the disease as his mother, grandmother and a couple of aunts had it but none of them was early onset, so it is a bit of a mystery why it struck him at a relatively young age and with the speed it did. I would just say don't wait to start the process of obtaining placement - look after yourself as well.
I found caring for him impossible, then having him in care even more impossible. Today I have realized that I am finally comfortable with my life now but it took newly two years. He is still telling me he went into LTC because I was so sick. That is all in his mind. There is no guessing or trying to figure out stages or how long the decline will take. Each person is affected differently. My DH started showing symptoms in 2000 and is still doing fairly well. His memory is declining and sentances can be mixed up but he is able to dress and eat and he loves to sing. Strange but some pass away three years after dx, others can last 17 to 20. Trying to guess what and when will drive you over the edge. It is going to happen when it is time for them. All you can do is the best for both of you. Looking after you is so important.after you.
I live in Canada as well and getting placement is so very different here.
there have been others whose spouse flew right through the disease. The most recent example I can think of is Coco's husband.
I think those that go fast probably have some variant that goes real fast. They say the younger onset AD goes faster, but some are speed of light, some in between and others just move along. My husband seems to be one just moving along - been 7 + years. Just proof that if you have seen one AD patient you have seen one. There is no predicting.
29scorpio, I echo what the others wrote. My husband was diagnosed in January 2013 at age 58 1/2. I placed him in mid November 2014 on a 2 week respite after he kicked me out of the house. He was a wonderful, calm guy before the disease but something freaked him out that November. Other than a couple of visits to our home, he stayed in the care facility. He had a seizure a week before he died in April of this year. Went into a coma several days after the seizure. I was numb wondering how this could have happend so quickly. Probably had been having quiet seizures for some time. A common description around here is surreal. He probably had the disease longer than I thought but the landslide happened very fast. No early onset in his family BUT his father had dementia late in life and his father's mother too. Interestingly, all three were lefties. His father lost his job in his early 60's and we were told he was downsized but now I am wondering if maybe he had MCI. No one left alive who can provide more info. You must look after yourself. There is no timetable for this disease.
My DH was dx at 58. But I felt something was wrong for many years before that. At the dx he went into the dr working, driving, doing everything a normal person does. After the visit, no more work, driving, mowing, cooking…. I often told the neurologist that he seemed to change every 7 to 10 days. No one seemed to listen. From dx at 58 in Feb of 2010 to end stages early Dec of 2013, passing Dec 16. It went way to fast.
Edit to add, I kept my DH at home to the end. We did have our DD who helped so much, who was 17 when he passed. And Hospice the last 10 months.
I can see by the comments that some progressions are incredibly fast...Such an overwhelming feeling of sadness all the time...some days I can't wait for his placement and in the next breath I am saying it is tooooo soon and I'm not ready...always such a seesaw of emotions, maybe the reality of the situation is just really sinking in now and the sense of loss and staring into the abyss is such a weight sometimes...Thanks so much for all your comments, clearly I do not stand alone on an island...By the way Rona, I am in Canada and panelled is a process we here in Manitoba have to go through in order to get admissions into PCH...the waiting time involved is mostly dependent upon which care facility you choose...I think at this moment in time if things don't really go south with this disease I could have another year or so left in me so I will look at something with a slightly longer window, however if things get real intense I could always change my choice and I believe he would more or less have credit for time spent waiting on the other facility as it seems the panel date ie: the date it's decided by a panel of professionals that he is ready for admission...Somehow I am thinking thats when the fun will really begin!!!