Bring Him Home

Do you know what I wanted to do? I wanted to bring Lincoln home to live with me. Not because his caregivers aren’t skilled and kind in the long-term care facility where he lives. They are. There aren’t enough of them but that is the nature of healthcare in Canada, isn’t it, in this rich, beautiful country. (Oh, there is a tangent just waiting for me to follow it, in that!)

There is enough of me, though, and so I am with him every day, most days twice a day, and our girls and our grandchildren are there as often as they can be, and that translates to many visits a week. But I still wanted to bring him home. 

When Lincoln first went into care it was because I couldn’t keep him safe or myself in good health. His interior world was changing so rapidly, his exterior world shifting and warping in ways I could not understand. I had frightening, unsettling glimpses of what he was experiencing from time to time but no one knows, no one can know, what it must be like to find oneself lost in familiar places, confused by those you have always loved. And because he had always been so fit and strong and independent, he clung to his physical abilities far longer than most do with his disease. Restless nights and restless days…hours spent planning thinking, arranging, grieving … alarms on the door…hyper-vigilance…and exhaustion. I did what I had to do and thought I would die of guilt and sorrow. 

We both settled into our new realities and I found a way back to joy and, I hope, so did he.

Now, you see, he can no longer walk, so the bitter irony of that is, he is safe. Safe and silent. So why not bring him home? 

I had this picture in my head of him here in the little condo we bought together and in which he never got to live. I had this picture of him snoozing in his wheelchair, while I cooked, or cleaned, or read, or wrote and whenever he opened his eyes, there I would be, or someone else who cared for and about him would be, and he would never be alone in his room and I would never wonder again if he was all right. Our family and friends would visit and he would be home. Home. 

It seemed, not simple, but do-able, and there are programs that support the desire. The work involved is daunting but I told myself I was up to it. I held on to that picture in my head. A wonderful, supportive team of healthcare professionals quickly organized itself to help me explore the possibility. If team members thought I was crazy, they never made me feel that way. They met with me and met with me again. They gave practical advice. They researched. They asked questions and found the answers. I read health ministry websites by the hour; I talked to family and friends and people who had made this work. I woke up in the middle of the night and crunched numbers, trying to find the money necessary to pay for enough help, for long enough, because if we did this, it could not fail. There would not be a place for him in care. We would be back in wait-list purgatory. I knew that. 

And I held on to that picture in my head. 

And then I had to let it go. In the end, it was too big for me, for too many reasons. I am not a business person and it would be just that, a small business, with a number of employees, sharing our space 24 hours a day, all deserving of decent pay for work that demands such a high level of trust and empathy and patience. 

Love does not conquer all. It does not triple my income or turn me into someone who is a competent manager of human beings. It does not turn back time so he can complete a Representation Agreement, a necessary step along the way. It does not increase the size of our living space or find the perfect helpers in a community, like so many, under-resourced when it comes to healthcare workers. 

It’s not that it’s impossible. I know a different me could make it work. I know that. That is a hard part, acknowledging my limitations and it isn’t just about having Parkinson’s. The hardest part is finding another picture in my head. Our girls will help with that. Our grandkids, too. Extended family and friends inspire gratitude for their continued, loving commitment to walking this path with us. I start to tilt sideways and they hold me up. That helps. 

I told myself when I started the process, and I told others, that I knew it was a long shot, that I was simply exploring the possibility. I was telling what I thought was the truth. Truth is, I made that picture in my head and it hurts to let it go. 

Truth is, another picture, will find its way through this sadness. It will live in my head and in our shared reality. It will bring peace, and a measure of joy, because the blessings of my life have worn a groove in my brain that leads, inevitably, to joy. I know that, too.

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