Back in July, when Mom broke her leg, we didn’t think she would still be here at Christmas. Her pain when moved was evident. Her leg was in an immobilizer, which was big and bulky.  We called hospice in to help with pain management. She was slipping away faster than before the fall, and we all knew it.

Before that day, we had our feet under us. Solidly in caregiving mode. Since that day, we have bridged the abyss. One foot here with Mom still caregiving in the present. The other, with the loss of Mom which is happening day by day. It feels just as precarious as it sounds. Straddling the void. Having both feet in different places with a chasm between them makes us wobble while trying to stay upright. A small breeze can knock us off course. A big wind could take us out. We are balancing as best we know how in the in-between spaces. Trying to stay the course and also waiting for Mom.

We have told her we will be okay. We have told her to go whenever she is ready. That we will be with her and support her in the transition. That we will make sure Dad is okay after she is gone. Everything we can think of to say we have said. She has smiled, as if she knows. Yet, she is still here. It is not her time yet. So, we wait, wobbly though we may be.

Most days, she sleeps. She is still eating pureed food, at least one meal’s worth a day. They feed her very slowly, because she doesn’t always remember to swallow. Only a sip of something to drink at her lips activates her swallow mechanism.

She no longer has the immobilizer on her leg, because it was causing sores to form. In order to prevent infection, they have taken it off.  X-rays have shown there is no healing in the break and since she isn’t moving her leg, there is no need for the brace.

They occasionally move her to a Gerry chair and take her to get her hair fixed. She gets to sit in the common area sometimes when they do music therapy with the residents. It requires multiple people and a lift to move her to the chair. It causes her pain, but once she is settled it seems to subside. She gets out of her bed and room a day or maybe two a week, if it is a good week.

She still cannot communicate with words of course, so managing pain is a guessing came. She is on Tylenol around the clock with occasional stronger meds when Tylenol doesn’t seem to be working. We use her facial expressions as indicators. She has good days when she is smiling and giggling. Others when she is mostly sleeping and others when her face grimaces in pain. Days when she eats. Others when she turns food away. Overall, she seems to be holding her own. Lately, the good days seem to be less. It has moved from good days to good moments.

For example, when we went to see her yesterday, she was sleeping. She woke up and the TV was on the Hallmark Channel which keeps her watching the movement on the screen, even if she doesn’t understand anything that is happening. Yesterday I said, “They are dancing in that movie,” and she wiggled her shoulders like she was dancing. Then she giggled. It was a moment where she was connected and I think she was playing with me!

Five minutes later, the pendulum swung and she was moaning in pain with a grimace on her face…because dying hurts. You have probably noticed it has gotten more and more difficult to get a good picture of her to share with you on our Friday visits. In a 20-minute visit we may see as many as five swings back and forth. With those swings, Dad’s mood swings, too. A good moment brings him some relief and pep in his step. A bad one brings him dread where his shoulders sink and his breathing becomes deep sighs.  

The caregivers say that when we are not there for our short little visits, she sleeps most of the time. So, while her smiles and giggles are wonderful to see, we are aware that a 10-minute visit is not much time out of 24 hours. She always lights up for Dad. We have been when he is not with us and do not get as much animation or connection.

All in all, she seems to be holding on. We are in waiting mode. Happy to see her, but also sad. Trying to balance ourselves over the abyss and not sway so far as to lose our balance. Thank you all for your prayers as we continue to navigate this difficult dementia road.