Today's blog discusses what I think is one of the most important facts the public needs to know during Alzheimer's Awareness month - that mood and personality changes are early signs of AD. Please read the blog on the home page - www.thealzheimerspouse.com - and post your opinions here. Do you agree with me? What ONE fact about AD would you like the public to know.
That this disease is not one you take a pill for and life is better as portrayed on TV, rather it is a slow death sentence that wreaks havoc in the family for years.
That it is a disease that TWO people get and it affects both. That it affects we spouses mentally and emotionally and sometimes physically, and often families are torn apart and divided, finances ruined and in the end one is left to carry on. Mostly that it can happen to anyone, anytime.
I don't think the public understands that for every AD patient, there is at least one Caregiver. Sometimes they are in nursing homes, but most of the time they are cared for by a spouce, a daughter or son. And that care is really a full time jobe, even in the early stages. For every thousand patients, there are at least as many (or more) caregivers. Their life is not very easy or defined as all patients take different types of care.
I think a large part of the ignorance surrounding AD is that it was always considered strickly a disease of the elderly. So when personality change occurred, it was considered a part of aging--getting "grouchy", "cantankerous", "crotchety", etc. For years, it was called senility, and regarded as a normal part of aging. So when the afflicted died, the death was assumed to be the result of "old age" as opposed to dementia. Growing up, I heard the term "second childhood" used regularly, as if it was to be expected. At least now, some of these myths aren't as prevalent, but the general public has a long way to go to understand the full impact of the disease on the patient and caregiver.
It has been a year December 13th when my LO had escalated to the point of hurting me. For several years he had been so ugly towards me. It was awful. I have to say when he finally got the diagnosis of AD rather than several years of MCI - it was a relief.
Since he has been on Depakote last December, he has been his sweel normal self - but those years before have taken their toll on me, our family and certainly our relationship. I can take the forgetting a lot easier than I can take the ongoing verbal abuse.
All of you who have experienced this know the hurt that it brings - I don't harbor a grudge, but it is so sad that we had to experience that in our relationship. And no one seems to understand that except other AD "friends". Thank you for spreading the word.
I agree that personality change should be considered and early warning sign, but we didn't know this until after diagnosis. Once you learn what the problem is symtoms all fall into place. The thing I would like people to be made aware of is that Alzheimers is not contagious so you don't have to avoid your relitives and friend because they have this disease. I also agree that more people should know that this is a fatal disease.
I agree with everyone's comments, and would definitely place personality changes closer to the top of the list of symptoms for AD. I guess making the public aware of the fact that a person with AD is not always aware of his/her diagnosis (due to anosognosia) is another fact that should be brought out. I agree w/ selwynfarmer that the public needs to know it is NOT contagious--so don't avoid your friends or relatives with the disease. Also don't avoid the caregivers--sometimes just asking "How are you" sincerely or a comment such as "I'm praying for you" does wonders in letting me know someone understands.
The public should know it is not just an "old persons" disease - that MANY under 60 have AD or some form of dementia. Personality changes, including uncontrollable anger or difficulty dealing with others should definitely be portrayed. It frustrates me to no end that all the AD ads for Aricept, Exelon portray the person with AD (always elderly) and the caregiver as passive, calm people and that the only issue is the person with AD is confused and sometimes disoriented. I' d love to see an ad with the AD spouse/parent being found by a stranger and beating the he** out of them while screaming they are being abused and abducted. That would be more realisitic.