planning mode

Getting used to a full house after my time alone. V is back in school full time and there’s a lot to do in planning his future. I’m also on the board of directors for an organization affiliated with his school that has started a day program and is planning for residential services as well, although that part is a lot of work and will take a while. I’ve been doing lots of research to prepare for a document I’m supposed to write and there’s a lot of complex details involved in starting a group home.  It’s been a struggle to focus on this as well as V’s immediate needs.  I often feel that I don’t use my time well enough.

The fact is that while V is at school I do have free time yet I rarely have the energy to do as much as I set out to do.  When people ask if I work or if I am retired I say yes and no, although it’s not like a regular job.  Devoted caregiver comes without pay or visibility, it’s a long-term thankless gig, one I share with millions of others, and I know I am luckier than many of them. T is a great partner and helper and I have people who care about me, even if there’s nothing they can do to help with the day to day tasks that enervate me.  It is a consuming job.

V is scheduled to go back to the respite group home in a couple of weeks so that we can go to my nephew’s wedding. It’s good to have a place for him to go as the long drive, the various weekend activities and especially the wedding itself would be overwhelming for him, and would limit our relaxation and enjoyment of the weekend.  It’s nice to have a joyful occasion to look forward to, and to have a safe secure place for V to be.

Planning for the future, whether two weeks from now or decades to come, there’s a mixture of hope and disappointment, grief and gratitude. Wanting him to get used to the group home setting through these short stays so that he will be acclimated to a new environment, one without us.  The empty nest seems beyond reach right now but it is going to happen eventually.  When is the question. And where and what and how, all to be determined.  

Other people I know with empty nests have had a combination of sadness and celebration, missing their grown kids yet enjoying the newfound freedom.  Friends who live alone likewise cherish their autonomy while admitting that loneliness is still part of the mix.  And I know people like us who don’t have that empty nest and don’t know when it will happen.  

The same questions always swirl around and come to the surface: How do we assure that V gets the supports he needs? That he has a full life in which he continues to learn and grow? How do we make sure that he isn’t stuck inside in a house doing nothing? How do we accept what we cannot change? A big issue is that staff, the direct service professionals who will be with him throughout his day and night for the rest of his life, that these people are not well paid and there’s nothing we can do about that unless we start our own home which as I’ve found out is a labor-intensive, arduous project. And while we can give staff gift certificates as bonuses we can’t do anything about the low hourly pay rate at existing group homes. We can support and vote for measures to raise the minimum wage, but beyond that not a lot we can do, and that’s frustrating. People who do this hard work caring for our loved ones deserve a decent salary! It’s a win: win – they’d feel more invested in their jobs and be rewarded for that. A livable wage benefits both the professionals and those they care for.

While I am ready for this next stage, it is still hard to let go, to let go of the dreams long dimmed.

For 21 years we’ve tried, we’ve tried everything. Well, that isn’t true because there are so many treatments and therapies and medications and supplements and special diets, there isn’t enough time or money to do everything… but we have tried a lot. And V remains an individual with severe disabilities, nothing has changed that. We’ve learned to accept that the progress we were promised over and over again was not to be, that improvements were modest and incremental and he remains, as his official documents now attest, someone who needs lots of supports for just about everything. 

And so there’s a lot of anxiety about finding a permanent home, a place where V can live and thrive. And so my time and energy get filled with hoping and praying as well as actually getting things done.  Doing the best I can to stay positive and get some daily tasks accomplished, to plan and dream and still stay grounded in the here and now.  

2 thoughts on “planning mode

  1. Holding the prayer with you that V be welcomed into a place where he will be loved, and grow and thrive. Thanks to his best parents in the world, you and T have given him all of this and that foundation will surely serve him well in ways you may not fully know. Blessings for the energy to take the arduous steps and may the right place at the right time to appear.


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