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A caregiver's mistake and a lesson learned

My fiancee Tracey is in the advanced stages of SPMS, and is also fighting a five year battle with stage 4 bedsores. Despite this, we still manage to travel from her apartment in Manhattan to my home in Pennsylvania every weekend. We have a full size conversion van with a hydraulic lift, so she can stay in her chair when we travel. Most of the time, she feels cold, even when the outside temperature is what I would consider comfortable. As a result, I have to keep the heat in the van higher than I would like so that she is comfortable.

This past week, however, was the first real summertime heat of the year. The humidity was very low, and I was enjoying the warmth with the windows down and the vents open during our ride to Pa. Naturally, since it is a holiday weekend, we were stuck in traffic for a good part of the ride. Because of this, I was especially cautious of turning the air conditioning on for fear of the car overheating.

Tracey will usually recline and tilt her chair so that she can relax during the ride. I talk to her and check on her constantly to make sure she is ok, but this time I guess I was distracted. When I finally checked on her after about 20 minutes, she was slumped over in her chair and not responding to me. I managed to pull into a rest area after a few more minutes.

She was very hot and had lost most of her strength, but was otherwise ok. She was not able to sit up properly, so I reclined and tilted her chair to a near horizontal position and laid her back. We always pack a bag to bring food with us, so I took the ice packs out, put one behind her head, one on her forehead and one on her chest. After she recovered some, we got back on the road with the air conditioner on high.

I forgot one of the near universal conditions of those with MS: Intolerance to heat. I will not make this mistake again.

  1. Hi Teddy S. It sounds like you are a very compassionate and attentive caregiver. Even our community members with MS occasionally forget their triggers or push their bodies a little too hard -- it happens.

    Thanks for sharing your story. It's a good reminder now that the heat of summer is here! Best, Erin, Team Member.

    1. Thanks, Erin. I guess the point I was trying to make is that as caregivers, we are human, and not perfect. No matter how well-intentioned we are, we will make mistakes. As such we need to do two things:

      1. Fix them, before they turn tragic, and

      2. Learn from them.

  2. I get that, Teddy S. and thank you for sharing, here! Thanks again, Erin, Team Member.

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