change is coming

We had our meeting with the agency where V is being offered a place in a group home and it looks like it is going to happen! There were three representatives from the agency who gave a presentation and spoke about the new house that is being renovated. V was the only member of the new home present at the meeting but two other parents were there without their kids (one was sick and the other didn’t want to bring his daughter, who V has already met at the respite house.) The group home won’t be ready until later this spring, a newly renovated house for four residents, two women and two men. We were sent the floor plan and address and went by to look at it, V’s future, and ours.

I’m relieved and excited. If things work out as planned he will move in June and we will have a summer unlike any we’ve had since he was diagnosed. Team V has been a full-time job and I’m ready for a new chapter with no more caregiving for T and me. We will have much more time for ourselves, and for each other. We will still be Team V, visiting him weekly or more often, but we won’t have all the duties and tasks that have taken over our lives for two decades. 

Of course V is more than that, more than duties of caregiving. He’s a lovely lovable bright and funny guy. But the fact is that even though he has school on weekdays he still takes a huge amount of my focus and energy.  I am so ready to shift gears, to have reading and writing and friends and family take center stage.  

Mixed with the excitement I have concerns and worries – I always do – about how he will adjust. Will he get along with the other residents? Will they have a good house manager and caring aides? Most importantly, will he be happy there? There is much that is still unknown and yet I’m trying to be positive and hopeful.  V’s life will be altered dramatically and so will mine.  

I just finished reading a memoir by a neurosurgeon who is diagnosed with advanced prostrate cancer. I read a rave review describing it as a book about the doctor becoming the patient and learning to face death. I read this while my father was dying and yay libraries, I immediately put in a reservation. When I received notification that it was available to pick up, my father had since passed away and I thought it would be a good read, that it might in some ways be reassuring in its honesty. While it’s beautifully written and frequently fascinating, the writer is just shy of 70 at the beginning of the book and focused on his old age. Part of this is spurred by his early retirement, which as he so well describes a surgeon needs full command of his hands and there being attuned to his mind – both need to be exquisitely quick and deft. 

And while everything he had to say about the decline of his body and cell degeneration and other natural progressions of age rang true, I found myself growing increasingly frustrated at how he was viewing 70 as old age – not just for him, but in general – when to me and in my family, it is just a number. My aunt and uncle are 95 and 97 and still vibrant people. I have another uncle who is 97 and still sharp as a tack. My father somewhat begrudgingly retired at 94, which is quite unusual I admit. Yet I have lots of older cousins and neighbors who are all active in their 70’s and 80’s. I need to believe that I have years ahead of me to pursue a lifetime of passions still to be reacquainted with or explored. There’s no way of knowing for sure but I’ll keep on walking and eating well and getting annual check ups and hoping that I’m one of the lucky ones. There is no guarantee.

For now, here’s to change. And hoping it’s a good thing. 

9 thoughts on “change is coming

  1. I’m so happy and nervous with and for you, Joan! I am sending lots of Reiki to you for a positive futures for all!


  2. This is indeed life changing news. I wish you and yours well in the transition, and may you enjoy your freedom from primary caretaking when June rolls around. Wow! 🙏🏼❤️


  3. May all this change be smooth and successful for V. May he be happy and loved and well cared for. Your love and loving care and attention is well embedded in V and he will carry this for the rest of his life, even if he can’t express it. Thanks for sharing the twists and turns and understandable mixed emotions and concerns. Sending love for this next phase; may it be all you hope for.


  4. Such a year of transitions! And, mixed emotions. Just as your parents gave you the skills to navigate them, you’ve passed them on to your children. I hope all goes well for V’s next chapter…and, yours!


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