Unexpected caregiver: Adult daughter high needs care due to accident

Posted by maystamper @maystamper, Feb 20, 2023

Back in 2010 I lost my parents, 5 weeks apart and our family dog. In 2012 our adult daughter fell down a spiral cement staircase and broke her neck. We flew to be by her side until she could be returned to Mayo Clinic. She was 31 at the time and a registered nurse. She recovered in a few months and could almost walk again by herself but her progress faded ? Stumped Mayo doctors and she regressed backwards. Many tests every 4-6 months could not pinpoint any cause for this. Eventually she was in a power chair with limited mobility. She went to therapy and tried to get back to where she was. In the meantime, we might bed her out of her apartment and back in with us. It was difficult. Eventually she moved out to a place without stairs and had a boyfriend and 2 small dogs that she cared for. She was needy and it was difficult to deal with it all. We also had a son who we had around as well. Then 6 years passed and she was on a trip with her boyfriend when she had a thunderclap headache, her right side drooped and she was ambulanced to a hospital in Florida and then airlifted to a larger facility. We flew there and I stayed 3 1/2 weeks with her as she had a brain bleed and a major stroke. She could not talk or walk. Her right arm was paralyzed. She finally was flown back to Mayo Clinic where she underwent speech and physical therapy. She resided in a nursing home for a year, then an assisted living where she needed a lot of care as she was a total lift.
Then she moved to another facility closer to home and then another facility through the county. During this last time we moved all of her belongings to 3 large storage units. Sold her car. Took care of all her financial dealings, power of attorney, her dogs, county requirements, taxes, etc etc etc.
We inquired about groups of others that could relate to what we were going through. She now is 42 and in a power chair. She could only move her left arm/hand after the accident but now that hand is crimping up too. She can’t sit up, stand up, or do much to help herself but her mind is like 80% with it. We are now old and have health problems to deal with.

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I am so sorry, @maystamper, for all you have been through. It must be truly heartbreaking for you to see your daughter go through all this and to be her main support. I hope you have some support for yourself.

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What a sad story. I marvel at all that you have done for your daughter, in that regard she is very lucky. Sounds like your daughter is in a good place where she is getting the care she needs. Perhaps it's time to take a break and care for yourself. I wish you all the best!

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@maystamper, I modified that title of your discussion in the hopes of bringing others into this discussion who may have similar experiences. I believe this is a side of caregiving that no one can or should prepare for - caring for the generation younger than you unexpectedly. As we age and our children leave the nest, the natural order of things is that we give thought to our own future care needs. But your trajectory took a sudden unanticipated turn.

I think @harriethodgson1 can relate. While her story does not exactly mimic yours, she found herself raising grandchildren due to the unexpected. @astaingegerdm also cares for her adult daughter, different circumstances again.

May, I want to assure you that this is a place that you can speak freely and frankly. I can imagine that you have had to adjust to the multiple curve balls thrown your way, reframed hoped as she improved, only to have hopes dashed and reframed again. This takes its toll. I'm sure the mental and physical challenges are many. What is weighing most on your mind today? What care have you talked about with your daughter for the future?

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