While I know that hundreds, if not thousands, of new “probable” diagnoses of “Early Onset Alzheimer’s” are given to families all around the world, it still knocks me down to my knees when I hear of another case.
Recently, a friend of mine (thinking I could offer some comforting words) introduced me to a friend of his (via the internet) saying that his wife has some form of dementia, in all likelihood, Alzheimer’s. She’s only 58 years old. He, George (not his real name), gave me a brief history of what his wife has been through the last few months. Depression, erratic behavior and forgetfulness to name a few. All terms my husband is so familiar with. His late wife, Gaye, exhibited all these behaviors before her heinous diagnosis.
Some of the words I had for George, besides sorrow, were that Gaye had the same symptoms. That it took a neurologist and a battery of tests to give them a clear picture of the cause of her issues. George then assured me that his wife is now undergoing an array of tests to determine the cause of her symptoms. Being in the medical field himself, he is painfully aware of what the diagnosis will, more than likely, be.
I shared with him that while I know the true victim is the Alzheimer’s patient, that I feel Alzheimer’s takes many victims. That while his wife is suffering now, it wouldn’t be long before she slips away into a world we don’t truly understand. But a world, as the medical field assures us, where she is unaware. Being unaware of one’s surroundings can be a blessing when you are 58 and subjected to living in a locked down facility away from family and friends until your untimely death. While she becomes unaware, he, George, would not be.
I then told George that he was the next victim in line of the nefarious disease that was taking over his wife, and left it at that. I didn’t have the heart to spell it all out for him. I couldn’t tell him of the heart break he will experience every time she forgets who he is. Of the decisions he will have to make for her care, decisions that no one wants to make for their loved ones. Decisions that, hopefully, he and his wife have discussed long before now. That even if he has children who support his decisions, that they are some of the most emotionally charged decisions he could ever make…and he will feel alone.
I didn’t dare tell him of what disease will do to him. That, at some point, he will go home to an empty house, day after day, once his wife is in a locked facility. That while he will visit her, he will always return to a lonely and empty house. The house that they once filled with their love. A house that no longer sings of his wife, but only of her absence. That he will facing this loneliness and emotionally charged decisions all alone.
That’s where my book comes in. I wrote “Bleeding Hearts” to let others know that the time spent in the shadow of Alzheimer’s, as it ravages a loved one’s body, doesn’t have to be spent alone. It’s controversial, I know. But having lived it with my husband; loving him through the most difficult time in his life, loving his children the best way I could, and even loving his wife, whom I never knew before I met my husband, is something I feel blessed to have been a part of, every day of my life. And because of my experience its my opinion that no one should have to spend that time alone if they don’t want to.
Knowing how I helped my husband showed me how I could help millions shed the shame of taking on a new partner, during their loved one’s illness. No one, in my opinion, should have to face such a difficult time or have to make life decisions alone. And no one, no one, should ever have to go home to a lonely house, if they so choose.
Bleeding Hearts 