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 intact 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?  Give me my dignity."  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 at 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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  1. People deal with things in their own way and should have the right to without getting too much sh*t for it. I know, and am lucky to have known, who your grandma was and how she did protect her privacy and dignity and unfortunately this is not how she ever would have wanted things to be I'm sure.

  2. There is a cemetery and funeral home we pass often, on its sign is the word "Dignity." I like that. I think I lost so much of my dignity when I was morbidly obese, and I am such a private and proud person, that was very tough for me. In disease and dying, dignity often is the first thing to go. Good on you for trying to preserve your Grandma's dignity as much as possible. I think at this point, however, her disease is much harder on others than it is on her, since for the most part, she is unaware of what is happening to her. Just tragic.

  3. When you get placed in the situation you understand why someone who was so close to their family member quit coming to see them when they had to be placed in a nursing home for their own safety. You are right, it does suck.

  4. My grandmother died of parkinson's a couple years ago. Towards the end, she turned mean and started hallucinating. Add the physical aspect of having to literally lift her out of bed, bathe her, wipe her, etc., my grandfather just couldn't handle taking care of her himself. AND YET... they wouldn't have someone come in and help her because she didn't want someone she didn't know in her house. REALLY??? It shouldn't have been her decision at that point. With 5 kids living locally and a number of grandchildren, it shouldn't have been such a burden. I don't mean to hijack your post but I just wanted to let you know that I've been there and it is absolutely heartbreaking and at the same time, INFURIATING, when you just have to sit back and see it happen. That being said, hang in there sweetie. Just hold on to all those wonderful memories you have of her. ((HUGS))

  5. Because I lived far away towards her end I wasn't there to see my grandmother when who she was had slipped away. But her treatment by family was so contentious it is still a sore topic, and she has been gone thirty years. It forever altered some family dynamics. It's so hard to honor your promise when your blood boils and you want to howl at the wind, but if she could you know she would tell you that you did good by her. Let everyone else deal with the emotional wreck of their choices. This situation blows no matter where you're standing.

  6. I'm so sorry. I completely agree with you about needing to bring in more caregivers to give your grandpa and other family members a break, and to provide more professional care for your grandma. I don't understand why he refuses or why the rest of your family won't push it. I suppose there's no telling how someone will respond to critical illness until it comes, and they are all doing the best they can. You are right to try to still your anger, they are good people and doing the best they can and they truly think they are doing the right thing. I'm on your side, I agree with you absolutely, for whatever that's worth, but there is no doubt in my mind that your whole family loves her just as you do.

  7. I have no words to offer other than I understand completely and my entire heart goes out to you, girlie!!!! <3 (((HUGS)))


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