Posts Tagged ‘caregivers’

Hi Everyone,

Caregiving is one of the most important aspects after a loved one sustains a spinal cord injury. There is no way around it, and there seem to be as many solutions as there are people and families who need to address this area.

As with most of my writings, I write from my own experience and those I have spoken to. What works for me and our family is not the only way; it just has worked (or in some cases – not worked!) for us.

And there are differences between taking care of quads and paras, differences between taking care of young children, older children, spouses, parents, siblings, etc.

One thing I believe in strongly, though, is to get outside help. I know of many, many families who don’t do this, and it seems to work out. Sometimes finances dictate the decisions, and I totally respect that. But in the long term, the best scenario is that the relationship between the person with the injury and the caregiver can return to the parent/child, spouse, sibling, etc. without all of the caregiving responsibiities getting in the way. Again, this is my personal opinion, and fortunately we have found wonderful, excellent caregivers to help. I know a lot of people who don’t have these options. But if you can, I strongly suggest getting outside help.

As a parent of a now 25 year old with a C5 SCI, it was a huge step for me not to do his daily care. I asked: who could do it better? Who would take care of him like I do? Who really knows what to do? We did find someone who has been with Darren for quite some time. Now I am his Mom again, and we are both handling the whole issue of care much better. He has his freedom, his privacy, his independence. While this is not new for us, it is something I felt important enough to write about.

I would welcome other opinions and thoughts, as I know there are many different situations out there. While I do not consider myself OLD by any stretch  of the imagination, it is a fact that I am getting older and will not be around forever. Darren needs to do as much as he can on his own, and being responsible for his own care is one big step towards his long term independence.

Thanks for reading! Cynthia

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Over the weekend, I watched a documentary film entitled “Luckey.”  The man featured in the field, Tom Luckey, was anything but. A reknowned architect of very large climbing structures for children, he fainted, fell from a window and sustained a high C level spinal cord injury.

The film follows his story of his personal and professional struggles. It shows parts of his life before the injury, showing a little of what kind of person he was and the things he enjoyed doing. It highlighted the relationships of people in his family, how they dealt with each other and with Tom, and how they handled life after a spinal cord injury. The story was touching, sad and happy. I could relate all too well to some of the family members’ struggles. And I could appreciate where Tom himself was coming from in describing his feelings and his desires.

Family dynamics were a focus of the film, and some of the segments had me crying……….for those of you reading this blog who know me, you know tears come fairly easy, so maybe it wouldn’t necessarily affect others the same way. But I thought the film was very well done, and I was very glad I took the time to watch it.

Check out the trailer which can be found at www.luckeythefilm.com. I have a copy if anyone wants to borrow it, or maybe you want to buy a copy for yourself. It’s about 90 minutes long, and well worth the time watching. I think you’ll get a good sense of the struggles that a person and their loved ones face after a spinal cord injury. Let me know what you think!


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Today I was thinking about all the caregivers I have met and conversed with in the 6+ plus years since my son Darren’s injury occurred. Most are parents, but there are spouses, adult children, siblings, friends and paid helpers. Probably other relationships I am missing, but these were the ones I was thinking of.

Like most other situations that you never dream being in or being a part of, the world of spinal cord injury is foreign and frightening. The whole issue of Darren’s care was so scary to me, that I wanted to bring one of the Shepherd Center aides home with us. Seriously! How would I ever be able to do all the things that were needed? Transferring with a hoyer lift, personal bowel and bladder care, showering, dressing…..the list seemed endless and overwhelming. With Shepherd Center’s Day Program, we learned to do most everything we would need to go home (by ourselves) and have confidence we would be OK.

Fast forward to my conversations with caregivers more recently. I hear the frustrations and the concern in finding the right person, keeping the right person, and how to balance care provided by family members with outside help. Even having a personal aide, many “jobs” fall on the shoulders of the family members closest to the person with an injury.

Today I was running for all those family members and close personal friends who help in thousands of ways to ensure the highest quality of life possible for their loved one who has a spinal cord injury. The moms, sisters, brothers, children and assorted others have either put their lives on hold or have greatly adjusted their lifestyle to do what is needed. I know there is grief, sadness and anxiety in seeing so many tasks, once taken for granted, so difficult to do on one’s own. But I also know there is great satisfaction in helping and assisting. Not only to accomplish those tasks, but to help our loved ones master new skills and adapt to new ways of doing things.

This run was for all of you who give of yourselves tirelessly and continuously, often sacrificing things near and dear to your heart. All for love – isn’t that what this season is all about? Celebrating love, celebrating life and celebrating each other.


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