Dealing with the emotional rollercoaster of the Long Term Care placement decision

Whatever happens, stay alive.
Don’t die before you’re dead. Don’t lose yourself, don’t lose hope, don’t lose direction. 
Stay alive, with yourself, with every cell of your body, with every fiber of your skin. 
Stay alive, learn, study, think, read, build, invent, create, speak, write, dream, design.
Stay alive, stay alive inside you, stay alive also outside, fill yourself with colours of the world, fill yourself with peace, fill yourself with hope.
Stay alive with joy. 
There is only one thing you should not waste in life, and that’s life itself…

~Virginia Woolf (attributed but unconfirmed)

This poem emphasizes the importance of embracing life fully, both internally and externally. It reminds us to remain present, resilient, and engaged in the world, even in the face of adversity. The repeated invocation to “stay alive” encourages not just physical survival, but also emotional, intellectual, and spiritual vitality.

This morning, the day after I posted it on a popular Facebook dementia caregiver support group, my wife was scheduled for the local Adult Day Program from 9-3, followed by my monthly Caregiver Support Group that I would normally attend right after dropping her off, plus I had a few other activities planned for my day off. 

But… Robert Burns said it best; even the best laid plans of mice and men oft’ go awry…

Lately, I’ve been beating myself up emotionally at the idea that I’ve started the ball rolling to get her placed in long-term care (see my video below). It will likely be months before she gets a spot, and I’ve been trying to get my head around the notion of “evicting” her from her own home to live out her days with strangers behind locked doors, bit by bit, but I have been distraught and crying about that idea. My role has always been to support her and protect her and respect her needs and this feels like abandonment and betrayal and the end of my beautiful marriage. I realize that these ideas and thoughts are unproductive and based on an emotional response versus being a reflection of the reality that we will still have a relationship and that it will be best for both of us. Better, in fact, for her. I’m doing what’s best for her! I need to keep telling myself this.

But this morning it took 15 minutes to get her out the front door, down the few steps, and lined up to get in the car, and she was unable or unwilling to sit in it. She started making noises and crying – she has aphasia so she can’t speak anymore – so I just gave up and started the slow and frustrating process of getting her back in the house to watch TV for the rest of the day while I gave up on my planned activities. This was after cleaning poopy pants last night and having her let go with a pee while standing as I was on my knees trying to get the pants off over her feet (sorry if that’s too graphic!)

So looking at things another way, from a resilience perspective, all this frustration was actually a bit of a gift to me, I suppose, in that it underscores that she can’t function at home much longer. It’s no life for me, and it’s not a good or physically safe life for her. Long-Term Care makes so much sense, as emotionally hard as it is to get my head around it. She will be with caring and compassionate professionals who can deal with the vagaries of a body and mind that are having a hard time functioning in daily needs, and I’ll be able to visit and help and focus on love instead of the chores of dealing with her failing body. It will make our remaining time together better again. When I return home I will be able to rest and recharge and be ready for another visit the next day.

I used to have a pretty modest and sometimes even a flat emotional state… nothing really fazed me or got me upset, and I sure didn’t cry except in very rare situations like the death of a dog or similar. Heather half-jokingly said I was “a simple man” and I always laughed at the apparent accuracy of that in certain situations.

That’s all changed… as a friend counselled recently, I need to just “let ‘er rip”. Not allowing this emotional rollercoaster to move freely could result in worse outcomes, so I’m OK with it, and I will trust my instincts and my friends and loved ones.