driving to visit her son at the care home

Growing older always involves some kind of loss.  For my Mom, it meant giving up her beloved car.  To Mom, a car has always represented freedom and independence.  She fancies herself as a kind of Canadian Thelma or Louise – ‘I’ve had it up to my ass in sedate!’ would be her motto (that’s a line from the movie).  I know that for her, looking out the window at an empty parking spot below makes her feel sad and powerless.

I still drive.  I have my health.  My particular sense of loss comes from letting go of my role as our son’s primary caregiver.  My entire adult life was spent looking after our children, especially Nicholas’ high needs.  I was his caregiver, but I was also ‘CEO of the Nicholas Wright Corporation’ – I was expert in advocating for him, managing his daily care, coordinating school affairs as well as therapies and home helpers.  Caregiving was my identity.

Now, Nick lives in a care home with a fabulous group of young and strong professional carers who are also friends.  I no longer have the strength to re-position Nick in his wheelchair.  I can’t recite his complicated medication regime anymore.  My confidence in giving our son the care he requires to live and thrive is shaken – I can’t do it anymore.

So, what is my new role?  I’m not sure.  One thing I do know: since Nicholas moved out of our home in the summer of 2011, I imagined that I could still look after Nick – I just didn’t have to at the present.  But until recently, I thought that if anything at his home went awry, I could bring our young man back home with us and things would go back to the way they were, with me at the helm.  Now, I know that’s not true.  I’m just too old for the job and that frightens me.

I’ll get used to these new thoughts in my head, I know I will.  And a good part of feeling comfortable with my own frailty is trusting those who are looking after Nick now.  I need to remind myself that I do trust everyone on his care team and I need to tell myself it’s OK to take a back seat.  Because magical thinking and caregiving aren’t great companions.  But amid the harsh realities of aging and shed identities, there has to be laughter and sometimes, the opposite of sedate. For that, I take my lead from Nick.

Donna Thomson is a caregiver, author and activist.  Her book, The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (House of Anansi Press, 2014) is available from all major booksellers in the USA and Canada.

Originally posted on The Caregivers’ Living Room

Written by Donna Thomson
Donna Thomson began her career as an actor, director and teacher. But in 1988, when her son Nicholas was born with severe disabilities, Donna embarked on her second career as a disability activist, author, consultant and writer. Donna is the Special Advisor for Caregiving at Tyze Personal Networks and is the International Advisor to the PLAN Institute for Caring Citizenship. She is the co-founder of Lifetime Networks Ottawa, a PLAN affiliate and is a member of the Cambridge University Capability Approach Network. Donna is also an instructor at the Advocacy School (Ottawa, Canada), teaching families how to employ best practice political advocacy tools when advocating for care. Donna holds degrees in Fine Art (Theatre), Education and Theatre in Education. Donna’s interest in new modes of social engagement for marginalised families led her to sit on numerous boards, such as the London International Festival of Theatre, Women for Women International Leadership Circle and Dovercourt Community Association. Donna has spoken on disability and family wellbeing extensively, including at the London School of Economics, the Skoll World Forum, and the International Centre for Evidence in Disability.

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  1. This scares me to think about. I am the sole caregiver for my son…cant imagine him living somewhere else

    • Ahh me too! My son is now 29 and I’m in my late 40’s it’s getting harder the older we get and This is my worst nightmare for both him and me. My heart goes out to you and all our fellow Carers and those we care for especially xxx

    • Thank you! I take care of my 40 year old son after getting a divorce after 38 yrs of marriage. But you are right…we do what we have to do as a momma. ❤

    • My disabled daughter is 31 & I’m in my early 60’s … the physical, emotional & financial toll her caregiving requires is exhausting … along with the isolation & confinement … it’s overwhelming!!!
      My fear is that as we both age … the likely hood of being able to secure an appropriate, safe permanent residential placement seems impossible … as such a facility simply doesn’t currently exist!!!

    • Same here. I am 54, mom of three adopted kids with different disabilities. All now between 19-28 years old. I am burned out and need me time so bad, but how can I let them go? And where to go? No good adult homes exist here, and if there is one I may consider, it has the longest waiting list you can imagine…

    • My daughter is 51…I worry because I read about the abuses in some of the group homes…I’m divorced and we rely on each other’s income…if she goes I don’t have enough money on my own….rock and hard place

  2. Reading your story there’s no doubt in my mind you put your son in the finest hands possible. Sometimes as caregivers feelings of doubt and guilt have a tendency to be felt but sounds like to me , with a loving heart, you did what was absolutely the best thing for your son and that is what good Mothers do. ❤️ FOR MY MOM #ENDALZ

  3. Yip. This was me last year. I physically can’t do this anymore

  4. I understand it’s very hard i take care of my husband and work in a nursing home and i to feel drained and feel imprisoned cause i can’t go anywhere I’m stuck. Yes I’m tired but i love my husband.

  5. Look for respite grant money. Easter Seals has some. I had to make decision to move my father to asst. Living or my husband and I would have died. They can care for him better than we could and there are activities. Not being selfish at all..just self care.

  6. I understand. I promised my husband that I would keep him home, but, I’ve noticed lately that I’m exhausted all the time. My health is going downhill. So, what do I do?

  7. I can relate @51 my Dad is 77 I work here and he gets my money……I have everything and nothing! No one to give me a break. Even if they did nowhere to go for vacation with no money. Someday my only break is sitting in grocery store parking lot.

  8. I’m the caregiver for my 73 yr old husband and I’m TIRED. But all my kids see is poor dad, and how bored he must be. What they don’t want to see is that he doesn’t want to do anything but sit and sulk. I feel like I’m in prison.

  9. Yes I hear you .. I’m 73 .. still on that journey .. some days are better than others ..
    I am trying as hard as possible to give my kids the gift of not having to be caregivers at this point in their lives by me taking care of my hubby .. he is homebound ..
    Eventually most of us will be caregivers or need to be cared for someday… God Bless you all

  10. Just when you think it can’t get any worse, it does.
    I’ve been a full time unpaid caregiver to my parents for over 21 yrs. I’m only 53yrs but i feel drained. Too tired and sick to take care of myself.

    • Yes I know how you feel


  12. Thankful you have a good home for Nick, and a trustworthy group of professionals looking after him. Your role now is just as important as ever; no one else will ever be his Mom!


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