Today is World Alzheimer's Day. Please log onto the home page - www.thealzheimerspouse.com - and read today's blog. It is an updated version of last year's important information about raising awareness of Alzheimer's Disease. Last year I asked why it is important to raise awareness. This year I am asking you to list ONE, just ONE fact about Alzheimer's Disease that you think the uniformed should know and why. If each person tells their fact to ONE person, and that person tells one person, the word will spread.
I would like people to know that many patients do not have insurance. Most people think that if you have a problem and do not have insurance that you are automatically covered by Medicaid. Young patients do not have insurance and their families are drained finacially.
It is not just forgetting names and where you put your keys. It is forgetting all the most basic functions of life. It is forgetting all your memories and the ones you love. That is 2. Sorry.
The families of Alzheimer patients are under financial and care-giving problems that must be helped by the rest of society. Aides patients and cancer patients receive such support. It is the right of the Alzheimer patient and his care-giving family to have their needs met, too.
As you know, I have many, but if I had to choose just one, it would be - It's not just your grandparent's disease - People in their 50's and younger can and DO get it too.
I have totally turned my facebook purple. I received a message from an old friend this afternoon asking me to tell her all about Alzheimer's. She thought it was just a memory thing, as do many. After reading all the posts from caregivers (and others) on my wall, she realized that she doesn't know anything about this horrific disease. This is an important thread, thank you for starting it Joan. I will wait to respond to her request until I have seen some of our responses. Maybe it will help me better explain.
There is absolutely no remission with this disease. It robs the patient and caregivers of a normal life. Love and patience are the main requirements of the caregiver's job description. Long after the money is gone, the disease remains.
alzheimer is a deadly disease that eventually shuts down all systems in the body -it lasts years leaving the person in constant need of care round the clock.
Great blog Joan.............. I had to think about this, it is too difficult to pick just one thing!!
If I had to though it would be to change peoples perspective on what Alzheimer's really is. To educate them that is isn't just memory loss, and to TRY to get people to understand the total devastation Alzheimers inflict on not just the victim, but the caregiver as well. Can anyone other than another Alzheimer spouse truly understand all that we lose??? I don't think so......
Doing crossword puzzles is NOT a prevention or a cure!!! (why does the Alz Assoc promote/reinforce this one?) Neither is insulin, or running, or vegtables or any other aspect of 'healthy living'. You did nothing to cause it, and you cannot stop it! You cant predict who and you cant predict when. So YES, it is that scary!
FYI- I have given a couple of Dementia 101 classes at a few local senior centers. Through this I was contacted by a social worker from a local senior housing/ALF center. (3 locations) They wanted me to give their residents classes on "brain fitness". Classes about puzzles and brain activty that would "totally prevent" dementia/Alz.
I tried and tried to tell this person that I would be happy to talk to her people, but brain activity is not a prevention/cure. Eventually I was invited to talk to their entire social worker staff and top managers. She thought I was auditioning my 'class' for which they would pay me to teach. I gave them my dementia 101 lecture and included all the different types. (NONE of thes social workers had ever heard of Lewy body) and included the symptoms and spiced up EACH symptom with stories about my wife and daily life.
WOW! They were shocked at how much they did not know and now really want me to teach to their residents. :-) My plan is to give them the dementia 101 material, reassure them of the differecnes between normal aging and dementia and perhaps work my way up to some sort of memory screening using the AFA material.
Wow, this IS a difficult question to answer. I guess I would say that there is no effective means of prevention, treatment or cure. It is SO frustrating to read almost every single day about how brain exercises, diet, exercise, whatever can prevent AD ... or that someone with AD will 'get better' if they just take this or that med. AAARRRGGGHHHHH!!
Even though I understood my husband's brain is sick, it still hurts when he says mean things to me, it still frustrates me when he is not responsive or confused. I feel angry, sad, abandoned, and defeated. And yet, my feelings are not valid, because he can't help what he is saying and doing; it is not his fault. Alzheimer's condems you to an emotional purgatory.
I'd tell them that the "wonderful meds" they've heard about canNOT slow down the progression, but just east the symptoms. I even know spouses of AD victims who believe the meds have stopped the progression or at least slowed it down consideraboly.
I would want to tell others that there are drugs that control the rages, bad behavior, etc. and they will make your life a lot better. Ask your spouses' doctor for these drugs and make them take them.
It's more than memory loss...many people become very violent towards loved ones. I know I'm only supposed to have 1 but....
The family will most likley spend all their savings caring for the LO. It will most likely brankrupt the family and those left behind will have few financial options.