I am searching. For me. For a way to survive. For a way to thrive. For a way to find myself in the midst of sorrow and angst. I am lost in my own mind of worry and contempt. Contempt for myself. I realized over the holiday break I don’t really like myself but I haven’t quite put my finger on why. You must understand I am a realist and I am just as hard on myself as I am on anyone else. Is it because I can’t save Jim? Is it because I have thoughts of wanting it to all be over, which in reality would mean him dying sooner rather than later? Even recognizing how difficult it will be to be a single parent, I sometimes catch myself wanting this to end abruptly so the children (and myself and everyone else really) won’t have to watch Jim lose himself and all he is/was. Is it because I lose my patience with my children when I am tired or stressed or disgusted by the fact I still need to clean off my desk, clean the bathrooms, do another load of laundry and clean my room and fix dinner? Do I find contempt for the person in the mirror because she isn’t a superwoman after all?
It’s true. I don’t like myself. I don’t like my looks and most of the time I don’t like me. I don’t like the person who needs help all the time. I am blessed by the fact we have many friends who have jumped at the chance to help us. I recognize what a wonderful support system we have and also recognize I wouldn’t survive without them. But I would be much happier being the one to help than the one constantly sucking up whatever is offered our way.
I am emotionally a mess. At any given time I could cry or fill your ears with a myriad of complaints and turn it into a tirade and then end it by feeling guilty and regretting the whole mess. I am constantly trying to get a handle on my mental status, my physical well being and organize my life, my house, my thoughts and my world. But, it is completely impossible to organize anything with a spouse with Alzheimer’s Disease. Things are misplaced. Things are broken. Things are left incomplete. I feel like a mess. I want order and all I can muster is major chaos.
Sometimes, I sit and I look at Jim. Really look at him. I no longer see the man who swept me off my feet….I see the hunched shoulders and the thin body and the timid responses. I see a shell of the man that at one time I thought could do anything and would help me conquer the world. I feel so sorry for him. I don’t want to feel sorry for my husband because I know he wouldn’t want it, but I do. I can’t help it. The contrast from a few years ago to now and I know the contrast that will take place over the next year or so….it breaks my heart. For Jim. For our children. For our friends. Jim deserves so much better. Not just because no one deserves to suffer at the hands of Alzheimer’s Disease, but because he has always been such a stand up, kind, giving and all around good guy.
There are more stories lining up than I can share….but I will share the one that stands out the most to show how I am failing my family…..
I recently had to drive just over an hour away to take Frances for a new adventure in her life. I had a choice; I could drop her off and immediately return home, or I could linger and have dinner with a friend. I chose the latter.
So, Brad was left home with Jim. Keep in mind, I promised myself a long time ago that I would never have the kids “babysit” Jim. So, I get Frances settled and I go to a leisurely, wonderful dinner with my friend. While we are eating, I have my phone on vibrate so I don’t hear or see the two messages from Brad. When I get to my vehicle I call home.
“Mom, where are you?”
“I’m leaving now. How was your day? “
“Good. You didn’t tell me you would be gone for lunch AND dinner. I didn’t know I would have to fix me and Dad dinner too. I thought it would just be lunch. “ Ouch.
“I’m sorry honey. I just got done with dinner and will be home in about an hour. Did you get enough to eat?”
“Yes. But why aren’t you home yet?”
“I stayed to have dinner with a friend. I told you I was.”
“Ok. I will see you soon. I love you Mom.”
“I love you too.”
Less than five minutes later, I get a frantic call.
“Mom!! Dad is crying. He has his finger stuck in the dog collar.”
“What? Can you undo the clasp? How did it get stuck?”
“I don’t know. It’s not the clasp. We can’t undo it. Mom, he is in pain.”
“Brad, go next door and get Rex (not his real name).”
“Mom, I can’t. I can’t leave him.”
“Yes, you can, go now and get him and he will be able to help.”
Ten minutes later, I call and find out the neighbor has indeed come over and helped. Once I am home, everything seems fine. Neither Jim nor Brad can demonstrate to me how he had his finger stuck. Jim doesn’t even seem to remember it happened at all.
The worst part comes as I am tucking Brad into bed:
“Mom, I think you need to get someone to stay with Dad. You know. All the time.”
“I know. I have been thinking about it.”
“Well, someone besides me needs to be here in case an emergency happens. Dad can’t do anything and there needs to be someone here to help him when he can’t.”
Yep. Mom of the year right here. My ten year old has more sense than I do. Hiring a caregiver at home seems so easy. But it isn’t. It isn’t just about money (although that is huge). It is finding someone. It is making that call or several calls. It is having someone in your home, in your life, ALL THE TIME; to see your many facets and to see the clutter and the mess and the ugly side of things. It is an intimate look into your family and your life and it is a huge step to take. I know I am about to take the plunge and I am not happy about it.
Next story: Clingy and trapped.