Epiphany Time (Again)


It’s been a rough week or so. This shouldn’t be much of a surprise because, well, my husband has Alzheimer’s Disease. I am fully aware of what is happening in his brain. I am fully aware that much worse is on the way. Yet, unbelievably, I am shocked when he is unable to recall what I just said or he no longer understands he is drying the vehicle instead of washing it, with a polo shirt and not a rag. At what point will I throw my hands up and just accept this fate? At what point will I just give in?

I started to realize a while back, with an unbelievable amount of guilt attached for good measure, that I am feeling trapped. Like a woman forced to endure a loveless, pre-determined marriage arranged by others. There is nothing lost on me at how this sounds. I understand that Jim has no control over his actions or his lack of ability to communicate or contribute to our relationship.  So, not only do I feel like I am in a situation where I have no say or have no way out, I then feel like a complete and utter ass for being such an un-understanding and un-accepting, un-docile wife. Yet, I recently had an epiphany: MAYBE JIM FEELS TRAPPED TOO. Huh? He did say something last year about wanting a divorce. It had come completely out of the blue while we were setting the table for dinner. He said he wanted one so he could move into his own apartment and not be a burden to the kids and me. At the time, I felt it was so noble and just like him to be thinking of us and to be searching for a way to make it easier for us. Now I am finally thinking a little more about his point of view…He does have to put up with ME and my abrasive reminders to change the clothes he has worn for two days or fix his belt that is not through all the loops and to shave and to tie his shoes or to eat lunch. Poor Jim is constantly being told what to do and now how to do it. I wouldn’t like that life very much. I don’t think Jim would (does) either. But (there is always a “but”) if I don’t tell him what to do, he walks aimlessly around the house searching for something he never seems to find. He has told me over and over that he wants me to tell him so he can do something. He tries to write everything down, but lately he can’t make out his own handwriting half the time.

I am not cut out for this. I am not patient and understanding. I speak my mind and move on. If my heart breaks; I want to cry, scream, rebel and get it out of my system. Then move on. If someone hurts me or misrepresents themselves or turns out not to be the cool person I thought they were, I have learned to cut my losses and….MOVE ON. But I can’t move on. I must stay in each moment and repeat myself over and over. I must steel myself for recurring heartbreak and frustrations. Then I must pretend that I don’t mind. I have never been good at pretending. I am supposed to accept this fate and somehow make lemonade out of lemons so our children have somewhat decent childhoods. All the while, let’s not forget none of this is really about me; it is about a wonderful, hardworking, intelligent, talented man who has been dealt the crummiest hand of all.

Now, epiphany number two: I am a horrible Mom. Not all the time. Just part of the time. For two reasons. The first relates to the previous paragraph. What fabulous Mom berates her children’s father? Enough said. The second reason is one that deals with time, money, stress and lack of “taking the bull by the horns”.  I noticed last week (because my 13 year old daughter, who I now realize takes on waaaay more responsibility than any 13 year old girl has the right to deal with, was away) that I was leaving my 10 year old son with an adult that could not react if necessary in an emergency; could not remember if they had eaten breakfast or lunch and didn’t really understand the concept of fixing something semi healthy; could not remember where our son was when he left with a friend; could not take charge enough to keep said son focused on the few things he was tasked to do while I was at work. Instead, he did exactly what any normal 10 year old little boy would do: played games, kept his pajamas on and watched videos and sports on tv. My head almost exploded when I arrived home from work to see that my list of things was not done by Brad, Jim had no clue where he was and couldn’t recall what had taken place that day and it became crystal clear to me: I now knew that Jim was not a responsible enough person to watch a 10 year old and if I left them alone again it was now officially on me if something happened. Talk about hitting a brick wall.

And my Mom wonders why I love beer so much?

So, this week Brad is in a camp, Frances is back and I am trying to make sure she just focuses on getting her own stuff done;  keeping an eye on Jim and the dog a little bit. A little bit. There is a very fine line that I am trying to draw around her to make sure she doesn’t get burdened with too much, yet contributes appropriately enough to make life a little easier on me and to help her understand the responsibilities that lie ahead for us all. She and I were walking after going for a jog together  last night and she was telling me how nice it was to get away and get a break from “all of this.” I could certainly understand her sentiments. But it was sickening to me that my first born was searching for ways out too. What terrific parent has a child that likes getting a break from home life? Isn’t that what TV movies are made of?

None of this is fair. I am stuck. The kids are stuck and worst of all, Jim is stuck. None of us have a way out. We only have each other. And with each other, we will make it through, but it won’t be as pretty, as happy or as idealistic as any of us would like or have wished for.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (20)