It seems I made a very controversial statement today on a website that within a few minutes had gotten 278 comments. I will look to see what the update is. Because of that I am re-posting this. Don’t ask, if you don’t know it doesn’t matter. (I’m smiling here)
This could take a minute or the rest of the year but I have something personal about which I need to talk.
Recently General Hospital, a long running daytime drama won an award. Here’s the quote from an article by Katrina Walker that I read online: “General Hospital fans have given the ABC soap opera’s recent Alzheimer’s storyline rave reviews, and now, so have the Sentinel Awards.” I tuned into another new drama that put an emphasis on suicide but as a side now has introduced a storyline on Alzheimer’s disease. Seeing that is what prompted this writing, I have something to say and you are welcome to correct me if your experience is different.
Both of these story lines have people talking to the person that has the beginnings of this awful disease and telling them they “have it”. Commercials talk about “a year ago today mom began losing her words, that’s when we started thinking about what to do.”
My mother was sharp, an avid reader and follower of all things politics in the news. She loved to watch the news and would leave it on all day but my dad loved his western movies and would say, “Turn it to 1 4 6!” So she had to wait until he was in his office studying to turn on her news shows and then pontificate on what was right and wrong in the world. The one thing she would say to me over and over again after her own mother couldn’t remember who she was and began calling her “Era”, which was a childhood cousin and “Myrtle” who was her oldest child and only sixteen short years younger ceased to exist in her mind. My grandmother would recall things from her childhood and recount them over and over again. She didn’t even remember my grandfather and locked him out of the house thinking he was a thief trying to break in. After mother would be with mama she would tell me, “That’s the one thing I hope never happens to me, to lose my mind!” So when she started, and believe me it was a rapid decent into near oblivion, to show major signs of losing her memories of the present I found no way to talk to her about it. I talked to our family doctor and he gave us a pill that was to stay off the onset but she refused to take it as she still had enough Myrtle about her to realize what that medicine was for.
As it progressed her family would come on occasion to see her. She would put on a good front of knowing them, and when they asked her “do you remember…” of course she did remember. They took this as a sign that she was really ok and that she remembered them because she acted like she did. How she had enough in her to even pretend I don’t know I just know it’s the truth. One day when her brother whom she loved dearly had been here and talked to her started to leave feeling that he had gotten through to her and that she remembered him started out the door, she looked up at me with those clear blue eyes and asked, “Is that man supposed to be a relative of mine?” Again, there was no talking to her about it nor suggesting that she go to an “adult daycare” (reference to GH) it was simply not happening. She would get stubborn because I wouldn’t “take her home” in the evening when it started getting dark. My dad would tell her, “This is your home”, answered emphatically with, “NO, its NOT!” Because I was caretaker for both she and my dad she would watch me do things for him then accuse me of being his lover. I would cry and leave the room, there was no convincing her. After he died she never even realized it even though she was in the room when he died and was at our little very private goodbye, we came home and she was looking for her “husband”. She confided in me that it wasn’t easy when your husband has left you, she forgot I was divorced. Then she would think she needed to go see about him so I would tell her he was at his desk studying and wouldn’t like it if we disturbed him, the preacher’s wife in her would acquiesce and say of course we shouldn’t disturb him.
It was a horrible battle with her screaming at me because I was keeping her captive, refusing to take her medicine from me because I was trying to poison her, staying awake for up to thirty-six hours because she was waiting for her parents to come and take her home. Finally in the last two weeks of her life, helplessly in bed and being tended to by hospice care, she started seeing her mother and telling me that she was coming and wanted her to go with her. She got sweet and told me she loved me, not something she ever said to me even though I knew she did love me very much. She told me that she was trying to be a good little girl for me because I was a good mommy and then in a moment of clarity she told me how proud she was of me and how beautiful I was, she told me I had taken such good care of her and how much she appreciated it.
On Christmas Day, which happens to be my birthday, she was pretty clear and talked to all the children, even ate a little piece of my birthday cake and then she told my son that “Mama had come to see her that morning and was coming to get her in a little while”. Ara asked her to wait till he got back from his in-laws, she just shrugged, and around 6pm just as everyone was leaving to go different places I took her into the bathroom and helped her sit on the toilet. She told me, “I can’t do this right now, I’m dying.” I told her she was not dying, but I would just change her dress and we would come back later. I got her to the little white leather recliner that is to my right as I type this and she kind of fell into it. I got down beside her and her last words to me were, “I’m dying”, she did. No drama, she just closed her eyes. I guess Mama came back for her after all.
It’s not like the daytime drama with these poor people who are trapped in this disease understanding and knowing what is going on; at least it wasn’t for me.
I pray for any of you who are dealing with a loved one who has this dreadful disease, know that there is someone here that knows and understands what it is you are going through.