All Part of the Journey

The unknown parts of caregiving that I see as the calm before the storm are those in-between moments between the declines. Any caregiver will tell you these times can stagger over time, or they can happen quickly. It’s really one more cog in the dementia machine that falls into the could/maybe/don’t know when category.


Hospice announced mom had a stroke or a TIA. While that makes sense to me, I’m not sure if that’s what happened, and really, it doesn’t matter. Stroke or simply decline from disease aside, the reality is it has left her with few words, less energy and an overall system slow down.

Now I wonder how this works. How in the world are we getting through this? I have thought about this time before, and yet it’s all very surreal to me. I’ve completed the requisite rearranging of the room. Moved her hospital bed closer to the window so she can see outside more clearly. Pushed her bed up against the hospital bed so I can sleep next to her. Moved the commode into her room as walking to the bathroom has become unsafe. Moved everything I need, supplies, meds, extra blankets, phone charger, into her room.


Caring for mom in bed has upped the ante of caregiving, it’s much harder. These last three weeks have physically been the hardest. Trying to readjust her, trying to feed, though minimally, and deliver some fluids safely. It’s all very awkward and challenging. Amazingly, my mother, in all her kindness and charm, has remained.


Our communication is fully intact. We have communicated non-verbally for years. From “it’s time to leave” to “don’t try the chicken salad” has always been conveyed through her eyes. Those beautiful eyes of hers where you can see how she feels and what she thinks.


That’s the scary part for me. I have always loved looking into my mother’s eyes. Light brown with a blue ring around the pupil. Those are the eyes I read, where I look and see her, all of her, and then panic when her eyes are blank. She has always come back, but I know we are on borrowed time.


Is today the day? Will tomorrow be the day? What do I do? Continue on as if everything is normal? This doesn’t feel normal. I pace while she sleeps and rush into her room when I hear her stir. I’m so happy to have another moment of seeing her. Of holding her hand. Of making her smile. And then she sleeps again. And I wait. Play games on my phone. Watch the same television shows I’ve seen a million times. And then she stirs and I jump up to say hello. To see her again. Is this the time? Was that the last time I’ll see her eyes? I am trying to memorize everything that she says to me; every look she gives me so I can remember it forever.


The constant stream of people coming to visit from the other side has been astounding. I don’t find it scary, or strange. It’s actually been comforting to know her family and friends are coming to escort her. It’s been a terrible game of “Guess Who” though - Is it a woman? A man? Do we like them? What color hair? Even though they are not visible to me, I silently thank them for their presence.


My wish is for her to live forever, but I know that’s a make believe wish. Truth is, I have blessed to have her for this long. Fortunate to have the relationship that we have together. There are no words left to say. No apologies to make. No fences to mend. She has always known my love for her is unwavering.


My focus is on being present. I don’t want to miss this time because it is as much a part of our story as all of our other time together. I don’t feel burdened or angry about it. Don’t get me wrong, I despise dementia with every cell in my body, but I always knew we would end up here. Sitting quietly together. Holding hands. Listening to music with her occasional tapping foot under the blanket, or raised eyebrow in appreciation for my singing along to one of her favorite songs. All part of the journey.