What is it about death that brings out the ugliness of the living? There's been no talk of a will yet, no cash payouts anywhere at this point. The roller coaster ride of Lewy Body I thought had reached a stop, instead the car just changed direction and speed.
The family I generally have to tolerate for a couple of hours on Christmas Day, I now have had the experience of seeing 24/7 since Wednesday. If not with them face to face, I've listened to endless hours of conversation.
It was made very clear to me that I AM NOT a part of this family, I'm guessing I must have just been an intern. One relative, whom I already struggle with small talk with, walked away mid sentence without a word to retrieve something. Another relative thought it a good time during a trip to the mortuary to ask sordid details of my childhood. In essence I was told I turned out OK for an adoptee, how DID I work through all of my issues? When I walked away, which I did on several occasions I was followed, with questions ranging from were you molested as a child? How severe was the abuse? How did you come to terms with all of this? All the while, my significant other thought it was nice to see his aunt and I bonding, so he hated to break in.
I'm dealing with the death of a man, who at one time lived with me, hated me for some time, but finally learned to tolerate me. I've calmed him down during hallucinations, where he saw a plane crash in the living room, I've helped feed him, change his diapers. Towards the end, I helped carry him from chair to couch to bed to table. Now that he's gone, EVERYONE is full of kudos for all that THEY contributed to his care. One had only visited him once in the last 10 years, yet was thanked for all her support.
I've been pushed aside. I'm left to assume I was merely an intern, because to be hired help, I would have been compensated. Instead, I've been kicked to the side, while they BASK in the light of their greatness.
By Sunday, I was exhausted, I needed an escape. I found out, a locked dementia ward is hardly the place to hide. After leaving the chaos of family drama, I was met with residents who sadly enough have no one visiting them. One woman frantically waiting for her ride, sending me off to contact someone to find out their time of arrival, another adamant that they had left the oven on. I was able to walk divert their attention when I said I was going to get oven mitts. One even tried to escape herself. When I heard a caregiver say her name, I was able to help her turn around and return to the dining room.
On most days I would have sadness for those individuals abandoned by family, however, today I was quite envious of their situation. I'm afraid of the meetings to discuss any financial windfalls for people. Their sense of guilt and insecurity knowing they threw their family member to the side, sure shined through showing some true, deep down ugliness. I must have been exhausted from the blinding light of their true self showing through. I KNOW it wasn't their halos.
2 comments:
Oh Lisa, I feel your pain. It's one of the things I have been dealing with - family. They can suck out loud, especially when they think offering advice over the phone 200 miles away is helping.
People just don't get how bad Lewy Bodies Dementia is, they don't even want to know. That's been my experience.
I am happy that your Care Giver Project is over, you definitely need a rest. YOU deserve so much more.
Personally, I haven't gotten to the end of my project but when I do, I know my sibs who have been no where in sight for years will finally come around crying and looking for sympathy for their "loss."
The absent family members, they are the ones who cry the most and want to feel good about doing nothing. I've heard this story over and over again. I'm not looking forward to after my mom passes, I don't know how to keep my mouth shut when I'm pissed off.
Unfortunately I can't offer you much except a hand of friendship and assure you that you are the best. Especially helping the folks in the NH. When I visit Uncle Al, I do the same thing as you. Now when I go, they all want to know how much they can pay me to take them with me. It breaks my heart.
LBD is definitely not an easy disease to understand. It takes time, patience and compassion. I think death in general brings out the worst in people...sometimes guilt and/or greed get in the way. Everyone looks for their name in the list of credits, whether deserving or not.
It's been a long road, but in the end, I know that we did all that we could possibly have done, leaving no regrets, no what ifs, could or should have been's.
Thanks for your support. It's always much easier when you find you're not alone.
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