I’ve always been a bit of a history buff, (You’ve probably heard that history is lies agreed upon. To which I always respond,” NO, that’s propaganda.”) I want to know what really happened and how people got by. When a country becomes swept up in a war, that means that it is no longer time for business as usual. If the war is a struggle for the very survival of the country, then real, and lasting, sacrifices will be made. For example, my parents used to tell me about the sacrifices people made in the second world war. Men were drafted into the military, trained, and sent to the battle field. They left their jobs in the factories, to join the military, and women took their place. Everyone knew families who had lost loved ones to the struggle. There were stamps for, gas, sugar, flour, and other essentials, because everything was rationed. People plowed up their yards and planted Victory Gardens. You were required to have blackout curtains on your windows. Speed limits, on all roads and highways, were greatly reduced. Everyone was on the lookout for spies and certain things were not talked about. Posters shouted out, “Loose Lips Sink Ships!!!” This huge struggle made it impossible for life to go on as usual.
If you read the reports about dementia, then you know that today one in every five families has someone with dementia. Sadly, this number is growing so rapidly that projections say that in as little as ten to fifteen years the number will become one in every two families. Teepa Snow says, “There is a tsunami of dementia headed this way and we are not prepared for it.” The fact that you are reading this blog indicates that the tidal wave has already hit your house threatening to wash away everything in its path.
My assumption is that you are a Caregiver to someone with dementia. Always keep in mind that dementia will not only kill your partner, but it’s coming after you too. I know you didn’t sign up for caregiver duty, you were drafted. Like the troops in WW II you need to go to boot camp. One reason so many caregivers are dying is they haven’t been trained on how to do the job before them. Thankfully, that is changing. There is a world-wide movement underway to get good, solid, training to as many caregivers as possible. However, unlike the military draft, no one is going to force you to get trained. It’s all up to you. Like it or not, you are on the front lines. Right now, the odds are you will die an early death, because this disease wants two for one. However, your death, because of dementia, is not inevitable, its all up to you. The ball is in your court, what do you plan to do? Do you want to live or die? When the troops were preparing to cross the English Channel, on D day, they were told, “Two out of every three of you will not come back alive.” My dad turned to the guys next to him and said, “I feel sorry for you two.”
Once again, I want to say, “We must fight together against this great evil!! I have a picture, in my mind, of a group of us standing together in defiance against this disease. I want say to FTD,” I know you want to destroy both Harriet and me. Your plan is to see us both dead. I don’t know what lies ahead. I might be bankrupt, out on the street, with no place to call home. But when you have done your worst, and this terrible time comes to an end, I will still be standing. I will be standing because I am not alone.” Will you Stand, and fight, with me?
I have been getting quite a bit of training on You Tube. The other day I downloaded, and printed off, Dr. Natalie Edmonds’ CareBlazer Survival Guide. It’s a free, 27 page, resource which tells you how to proceed in boot camp. (To get your copy, go to CareBlazers, on You Tube or Google, Careblazers Survival Guide.) Some of the chapters are: Prepare for the Journey, Understand, Survival tips, Get Your Mind right, and Practice Self-Care.
If you don’t like to read, You Tube is the way to go, since you can get hours of video training. For specific information on the type of dementia your Loved one has, go to You Tube and type in Alzheimer’s, Frontotemporal Dementia, Vascular Dementia, etc. For training on how to be a better caregiver, type in Teepa Snow, or Careblazers.
If you like to read, there are hundreds of books, articles, web sites, and studies available. Every, type of dementia has websites, and/or studies by universities and hospitals. Just type in the dementia, your loved on is afflicted with, in Google, and you will find all kinds of resources. Two of my favorite Books are: Mayo Clinic on Alzheimer’s Disease. Ronald C. Petersen, Ph.D., M, D. Editor, c. 2013 and The 36-Hour Day, A family guide to caring for persons with Alzheimer’s disease, related dementing illnesses, and memory loss in later life. by Nancy L. Mace, M.A. and Peter V. Rabins, M.D., M.P.H. C. 1999, 3rd edition, Johns Hopkins University Press.
Where do you start? For me the place to start was in coming to an understanding of the particular dementia Harriet has. I found out that many of the things that made me feel like she no longer loved me, were just a part of this disease. I was upset and taking things very personal that she couldn’t help. Learning about FTD has been such a blessing to me because it has reduced my stress, anger, and sadness level. By learning all I could about her illness, I know what to expect, and can get an idea of how far along she is.
In a war the military studies the strengths, weaknesses, weaponry, and tactics of the enemy. These studies are vitally important because to underestimate your enemy will lead to certain defeat. So too with dementia. We need to know what we’re facing so that we will be ready to deal with whatever comes our way. This is a terminal disease for your loved one. It doesn’t have to be for you.
Next Wednesday, I will be writing about the help that is around you. Every community has some kind of resources for dealing with this disease. One model community is found in Southern Alabama. These guys really have it all together. Check it out at, Caregiversunite.org.