Tuesday, August 11, 2015
The last thing I can give her...dignity
When I went to a doctors appointment with my grandparents early in my grandma's dementia diagnosis, it was heartbreaking. She's a proud woman and does not like to be made a fool of or to look foolish. I went because their usual family member was unable to attend that day and some things needed to be addressed with the doctor. I wrote the behaviors of concern down, slipped it to the nurse to be attached to her folder before they got there and based on the questions the doctor asked, I knew he read it. He would ask her if she was having trouble with things listed and she'd say no and I'd smile like "yes, she is" but she couldn't see me.
When it came to cognitive tests like looking at a digital clock and telling him the time or drawing a clock face on paper, she couldn't do it and tried to dismiss it. I would try to look away to keep her modesty in tact but she was embarrassed and humiliated that I was seeing her that way. It was a vulnerable side to her she never wanted me to see and I tried my hardest to hide my misty eyes but couldn't. As my grandpa got the car, I couldn't look at her because I didn't want her to see me watery but she caught me. She gave me a hearty "it's okay sweetie" and I squeaked out "I'm sorry" and she said "I'll be fine" and I nodded in a way that told her I wasn't so sure. She said her famous line "now you listen to grandma" which means she meant business and said "I'll be fine and if something ever happens, I would never want you to see me like that." I hugged her and she said "okay?" I nodded yes and cleared up my tears before he got out of the car. I smiled and waved goodbye to her.
As she has continued to deteriorate, I have kept my distance for many reasons. I'm not good with being in the throes of disease. I literally cannot stop myself from crying in front of her when I'm around her. I see her sitting there with her eyes closed, looking like she's in pain and my heart rips from my chest and I can't take it. I also keep my distance because I am seriously opposed to the way her care is being handled. It's good people making bad decisions and my opinion isn't valued because everyone wants to pretend they can all handle it. Her behavior has taken a drastic turn in the form of hallucinations, having conversations with people who aren't there, verbal threats when her meds were reduced then having to be put back on the meds that are dangerous, she's tried to eat objects that are not food and is now getting up in the middle of the night and doing God knows what. Is he going to get more health workers coming in the house above the 3 hours he has one day a week? Nope. Why? Who the hell knows but it takes everything in me to not go completely ballistic on him and everyone else when there is MORE than enough money to have people come in constantly to help with her. No one pushes him or says "look, we're not going to come help you anymore if you don't get more help. She's our mother and she deserves better." I understand they don't want to rock the boat but hell man, someone take a damn stand! If I took a stand, they would disown me because 3 years of repressed anger would flood them all.
So I feel like the only thing I can do is to fulfill that promise I made to her on that day of her appointment when she told me she wouldn't want me to see her that way. It was bad enough I saw her in a compromised state and it killed her. Even if she doesn't know any better now...I do. Dignity is the last thing I can give her and if it ticks everyone else off that I'm not shouldering the burden that they're all starting to feel then be ticked off. I don't care. My opinion has been brushed off for years where her care is concerned so if everyone else thinks they are doing what's best, then have at it. I refuse to enable behavior that is not in her best interest. I must try to not be so angry at them and hold my tongue because I think it all comes from a place of denial on their part but I will not break my promise to grandma.
I will hold in my memory the woman she wants me to remember, not what she's become. It's hard but she's not there anymore and she's taken an antagonistic turn that I can't bear to watch is nothing like the woman she was when she was healthy. I am 100% certain she wouldn't want me to see that. It feels selfish and maybe it is but it's better than the alternative of my emotions spewing forth in a moment that could rip our family apart.
This disease effing SUCKS!
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