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Karen Garner, who blogs at Missing Jim about being the caregiver for husband with Younger Onset Alzheimer’s disease, sent us this special post for #Blog4Care.
Alzheimer’s Disease. Specifically Younger Onset Alzheimer’s Disease. Most people have never heard of this hideous disease. I wish I never had either.
It affects about 10% of all Alzheimer’s Disease patients. My husband is one of the lucky ones. One of the 10%. One of the ones that face a frustratingly long, slow battle that he isn’t given any ammunition to fight back with to even have a chance of winning. He is turning 52 on April 7th. His brother was 52 when he passed away from Younger Onset Alzheimer’s Disease. His Mom also passed away from it.
When we were going through the very arduous, long process of trying to figure out why my husband, Jim, was just “not himself” and why he was saying some weird things and doing some weird things, I had no clue what was about to happen. I had no clue that our young children were going to become subject to a childhood none of their friends will face.
Finally, we were told that he has Mild Cognitive Impairment with the strong possibility of turning into Alzheimer’s Disease based on his family history.
It took a very long time for this to sink in. I had to get in front of a computer and start searching for answers and desperately hoping to find something that would promise a light at the end of what was quickly becoming a very dark tunnel. Nope. No hope. No remote chance of any kind of help. A few possibilities of staving off the disease for a short time before it would eventually end up at the same place.
Then it hit me like a freight train smashing into a brick wall. My breath left my body. My life, my journey, my destiny was changed the instant I realized that this atrocious malady runs in my husbands family. Our two children are likely to one day face the same awful news and the same awful war with no battle plan.
Our world was suddenly full of a sense of purpose. We must fight for them NOW so they can live LATER. If we wait until they show symptoms, it will be much too late.
That was nearly 5 years ago.
Our daughter is now 13. Our son is 10. She remembers Dad before. He does not.
In 5 years we are no closer to having a good treatment to help patients live longer. We are no closer to a cure, or a preventative vaccine. We are offered no more help with hospice care, in home care or assisted living care than what was available 5 years ago. We have more tools for quicker and easier diagnosis, but they are not implemented widely and they are costly or painful. 5 years closer to losing my husband and 5 years closer to the magic age that it seems to strike in his family. There are a few drugs that we have tried (and he still takes) to try to lesson the symptoms and to help manage the disease somewhat. Honestly, how can you tell? They don’t promise a cure or even to get better. How do you know how much quicker they would be declining? You don’t. You just see the slow progression of the illness.
You are given no help to figure out what to do next. Support groups? Find them on your own (through the Alzheimer’s Association). Literature? Google is your friend. Next steps? Find someone that will tell you to seek out a good elder care attorney right away.
Jim and I have decided to do what we can to not only help our children, but to help others that face this problem. We want to be part of the solution and the change that is needed for millions of people going through our same plight.
Our love story began nearly 18 years ago. Jim was in the Air Force and I was a GS employee working at Nellis Air Force Base. We knew right away we were meant for each other. Jim retired as a Senior Master Sergeant and went on to work as a government contractor. I soon became a stay at home Mom, volunteering at schools and community organizations.
Now he is unable to multi task, make decisions or focus on anything for any length of time. Sometimes he has trouble finding the right words. He is no longer driving. Recently we were filling out some paperwork and I asked him his mothers’ birthdate and he could not remember. He is aloof and at times, unemotional. He seems to be unaware of how all of this affects our family. It breaks my heart because he always was a very hands -on father, a loving and romantic husband and very involved in our community. Charity work, yard work and playing with the kids were all things he loved to do. Our world was a better place because of him. He still shows us the meaning of the word courage. He gets up each day and does his best to be the man he is today. He helps however he can. He asks what he can do next. He tries so very hard to stay “him” when deep down inside he must be very scared.
I work full time and at the same time try to keep track of him and the kids. It is sometimes completely overwhelming, but I am not sure sitting around with nothing else to do is a better alternative.
Every person that hears our story and decides to help our cause makes our efforts worthwhile. Every person who is struggling just the same as we are and feels a little less lonely and a little braver because we have shared our journey with them makes it all worthwhile. It is time for all of us to help each other and help those that don’t even know yet they will need help. Please, stand up and have your voice, your story, your heartbreak heard.