Welcome to another edition of What I'd Like For You To Know. If you're new here, the idea behind this series is to ask women to share something about a specific life challenge or circumstance, addressing some of the misconceptions and (most importantly) telling us all how we can reach out better.
Today's guest poster is Carol of She Lives, one of the first blog friends I ever met in real life. Carol has--not once, but twice--walked with a parent through the extraordinary difficulty of Alzheimer's disease, and I asked her if she'd share with us some of what she has learned.
January 21st marked the fifth anniversary of my father’s death. He had just turned 65. His was the rare type of Alzheimer’s, the hereditary type, found in less than five percent of cases, marked by early onset, directly traceable from child to parent to grandparent to great-grand.
For the other 95%, Alzheimer’s strikes randomly.
A lot of people mistakenly think of Alzheimer’s as “loss of memory” and leave it at that. Unfortunately, the disease progresses beyond the memory. The victim regresses verbally, mentally and physically to the state of an infant. Eventually, complications end their life. That’s the sugar-coated picture. Each person’s journey through the disease process is different, usually taking years to reach its inevitable and tragic end.
There is no cure. Nothing can prevent it. Nothing can stop it once it starts. There are drugs on the market that can slow down the progression, postponing the inevitable, drawing the entire process out longer than it would otherwise take.
There is no treatment. There is no surgery. There is no prevention. There is no cure. Nobody recovers. Nobody goes into remission. Nobody!
Imagine the shock, the fear and the despair my brother, my sister and I felt this past fall, just a few short years after Dad’s death, when we were told our mother also has Alzheimer’s Disease. What are the odds that we would face the horror twice?
The odds, I’m afraid, are very high that you will have to face Alzheimer’s Disease at least once in your lifetime as well. If not in a loved one, then in yourself.
Here are a few things you should know about Alzheimer’s Disease:
• It is the 6th leading cause of adult death in the United States.
• Someone develops Alzheimer’s every 71 seconds.
• Approximately 5.2 million people in the United States currently live with Alzheimer’s.
• Hereditary Alzheimer’s Disease can develop in persons as young as 30 years old.
• More women develop Alzheimer’s than men.
• By age 65 years, you have a 1 in 10 chance of getting Alzheimer’s.
• By age 80 years, that chance goes up to 50/50.
• More facts here.
Here's what you can do to help NOW:
Learn. When dad was diagnosed, it took us a while to realize what was happening. His doctor told us it wasn’t Alzheimer’s, it was depression. By the time we got an accurate diagnosis and could legally intervene, Dad had been arrested twice on traffic violations (he’d never gotten a single ticket in his pre-Alzheimer’s life!) and was financially ruined (we had to file his bankruptcy papers).
We were better prepared with Mother and obtained Durable Power of Attorney before things spun out of control. Either way, attorneys are going to be involved. Find a good one. If you suspect Alzheimer’s in a loved one, do not settle for one medical opinion. No matter what any doctor says, always get a second opinion, preferably from a good neuro-psychiatrist.
The more you know, the better equipped you will be to deal with the eventuality that someone you know will develop Alzheimer’s. The Alzheimer’s Association is there to educate and support anyone directly or indirectly affected by this horrible disease.
Become a Champion. The Alzheimer’s Association is looking for five million people, one for each person who suffers from the disease, to champion the cause. As of this writing, they were at the 1.7 million mark. See the page of celebrity champions to get more information.
Grab a widget for your blog or other social network. Spread the purple around! Let others know you support the cause to end Alzheimer’s. Everything you do to help moves us all closer to a cure. When Dad got sick, I looked around and saw no purple. Seeing more purple in the world can be so encouraging to those of us feeling isolated in our plight!
Take A Walk. Each fall, there is an Alzheimer’s Memory Walk in a city near you. Contact your chapter of the Alzheimer’s Association to get on board. One year, my small team of six scrapbooking friends raised over $3,000 – more than any other team in our county!
Donate. Everyone has their hand out. Everyone wants your money. But nobody wants Alzheimer’s Disease. Can you set aside a dime each day? Just a dime a day. Involve the kids. By the 2009 Memory Walk, you will have collected over $25.00 It’s tax-deductable and you won’t even miss it. Follow up with a purple party that includes playing the Memory Game to celebrate how good it feels to help!
Create Awareness. This past fall, my rock band, Elixir, played at the local Memory Walk for free and donated our tips and earnings from the gig just prior to the Walk. In the workplace, at school, at church, on your blog, . . . Here are other ideas you can use to keep Alzheimer’s Disease at the forefront of people’s minds. Some of these are actually quite fun!
Adopt a Caregiver
• Visit. Caregivers cannot leave their loved one alone. Ever. They could use a little company from time to time.
• Light shopping. On your way to the grocery store, pharmacy or post office? Call to ask if you can pick anything up for them while you’re out.
• Elder-sitting. Offer to stay with their loved one while they go to the hair salon or run an errand or attend church. This is absolutely the single biggest thing you can do to help.
• Reach out. A card, a note, email, a phone call. They feel so isolated and just need to know someone cares.
• Light housekeeping. Caring for an Alzheimer’s sufferer is physically and mentally exhausting. Housekeeping is low on the priority list. Can you do a few chores to ease the burden?
• Listen. You have to be Job, Mother Theresa and Solomon all rolled into one just to make it through a day with an Alzheimer’s sufferer without wanting to scream. Sometimes all the caregiver needs is someone to listen to them vent.
And please, spread the purple around. It helps us so very much to see it!
To read more of Carol's posts, visit her blog, She Lives.