Living in Limbo

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sunset-79875_640Mom is living in limbo. She is stable right now and has been, with a few relatively minor issues, since she came home last December. Caregiving in this house is not the challenge of caring for someone with a life threatening disease, it’s not the kind of disease, whether acute or chronic, that has frequent medical crises, the balancing of new or changing medications and multiple diagnostic tests. The challenge, right now, of caregiving is watching someone inch away ever so slowly.

It has been over three and a half years since Mom moved in with us. Wet macular degeneration robbed her of the vision in her left eye. Her independence has been lost during that time to the point where she is being moved from bed to wheelchair via a hoyer lift. She cannot go to the bathroom when she wants, walk to the window or feed her cat. She is unable to move the wheelchair on her own due to the arthritis in her hands, shoulders and neck. Even trying to hold playing cards is almost too painful to tolerate.

Osteoarthritis isn’t a dramatic disease. In fact, most of us will feel its touch before our lives are over. But most of us won’t become so debilitated that we cannot reach our hair to comb it, hold a knife and fork to eat without pain or be able to stand to brush our teeth.

So she lives in limbo. Pain pill to pain pill. Bed to wheelchair. Wheelchair to bed. At 94 she is all too aware of what she has lost, what she wants to be able to do for herself and cannot. She hates needing to call for everything that is out of reach. The salt or sugar if I forget. The remote if she drops it. Her place in the Kindle if her tremors make her fingers touch the screen too many times or in the wrong place. She feels so out of control and so lost.

She is grateful for everyone who comes to help her, to heal her. She is so loved by her doctor, nurse, caregivers and of course her family. She loves us back with all her heart. She knows that but she usually ends her evening silently or out loud hoping she won’t wake up in the morning.

4 thoughts on “Living in Limbo

  1. Avatar of TrishTrish

    TDM, How difficult it must be for everyone involved to see this decline and to see her in pain. “Stable” seems like it would be a good thing but I understand how heartbreaking it can be. Then to hear your mom talk about not waking up in the morning – oh, that has to be tough.

    One of the things that touched me about this post is not the big things you (and other caregivers) do, but the little things. Like setting salt and sugar within reach – those are the types of things that are done out of love and it’s clear how much you do love your mom.

    Sending hugs and hoping you have a wonderful day.

  2. Avatar of LisaLisa

    TDM, I’m an only child as well. And like you, the type of caregiving I do is for someone who’s “slipping away”, only Daddy is 87 and your Mama is older. He has a lot of the same problems as far as confinement and I can relate all too well to many thinks you are referring to about her not being able to get up and move around. Just know if you ever need to message me to talk, we have quite a bit in common. Thank you for taking such good care of your Mama. If you’re like me (and i feel you are), you probably wouldn’t have it any other way.

  3. Avatar of DeniseDenise

    Hi TDM–I love this post because how descriptive you are about limbo. It strikes me that living limbo is exhausting because every morning you have to force yourself to make it through the day, to make the best of it, to plow through. It takes a huge amount of patience to live in limbo and it becomes a huge test of faith.

    So, thank you. :) Understanding limbo simply makes me more compassionate.

    Reply

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