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Update, and Visitations

It seems I spoke too soon. 🙂 Mom has had a few things to eat and quite a bit to drink, and she’s been wide away for several hours. Quite a welcome change!

Our efforts now are on conserving her energy, minimizing anything that requires her to pay a lot of attention and respond. I’m not sure everyone understands, but it’s a lot different on this side of the fence.

I had actually typed up a long section in my previous blog post about this issue, but I deleted it all because I didn’t want anyone to get the wrong idea. I’m still not sure I can say what I want to say in this particular forum because the audience has changed so much. But this blog started as a place for me to store my feelings. I suppose it should stay that way. I’ll see if I can limit it to this, and, even though my writing seems to always put my proverbial foot in my proverbial mouth, I hope no one will take this the wrong way:

I never knew what it was like to be a caregiver until this year. It’s extremely different than being a caring person. It’s impossible, as a caring person, to know how to appropriately express your sympathy to a caregiver because we are all different people with different methods of coping, interacting socially, and…well…just being in general. It is difficult for a caregiver who is generally anti-social to all of a sudden have to open up your home and your life and your private moments to everyone you’ve ever known, all at once. And all of those people want to know how you are, and they want to give you a hug, and they want to express the sorrow and sympathy and love that they genuinely feel. It’s a shock to the system. It’s everyone trying to do the best s/he can under the circumstances. The most curious thing to me is how everyone comes out of my parents’ bedroom telling me how my mom is doing. I’m not sure I understand this particular impulse, other than maybe people want to share how they’re feeling and we’re about the only ones who will truly understand.

I don’t know how to accurately express what I’m feeling without alienating people and making them feel like they shouldn’t come visit mom. That’s not my intention. Mom has always been a social creature. She loves people. She loves being around people, caring for people. I remember she told me when we were at the beach that she liked being at home better because all of her friends were around and came to see her. She likes seeing her friends, and I think the best thing in the world for mom is to have her friends and family here to just *sit* with her. To be here with her and to let her know by their presence that she is loved and supported.

Serious demands on her energy, or my dad’s energy, make me feel very protective. There’s only one person who is here 24/7 and knows exactly how mom is doing and what she’s capable of handling. Anyone else coming in only sees an hour of her life at most, and something that taxes her energy for even as little as two minutes might seem like the smallest thing in the world to that person. That person doesn’t see the consequences that appear later in the day, or even the next day, when lots of little two-minute bursts add up to mom being nearly unable to wake up. Her body is disintegrating and she’s only taking in a max of 200 calories a day…everything adds up.

So for those of our friends who are reading this, here’s what I really want to say, and I hope with all of my being that you will take this in the loving spirit in which it is intended:

  • If you feel you need to or very much want to visit, please do. Don’t let me scare you away. Mom loves you.
  • Please just be aware that we’re doing the best we can as caregivers to do what we believe is best for mom, and we hope you will respect that, even if you think you know better.
  • Please do your best to help mom conserve her energy. If you come to visit, come and sit. Maybe talk to her a little. But don’t ask her a lot of questions or force her to attend to much or talk much. She hears you when you’re speaking, and so far she still knows who everyone is. She’s saving up her smiles for you, so treasure them.
  • And please do your best to help us conserve energy, too! Take a little while to put yourself in our shoes just to think of what it might be like.

Thanks for reading, and for understanding. 🙂 I know that we are all hurt people just trying to do the best we can, whether we are caring people or caregivers, but none of us need any more stress than we’ve got.

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