Caring for Me

As my youngest caregiver ever gets ready to move on with her education east of the mountains, it is time to reflect a little about needing care and how that’s evolved over the last four and a half years.

After a trip in August of 2018, to Alberta, Canada to visit where my grandma was born, I succumbed to pneumonia and didn’t easily overcome it.

My health had been quickly deteriorating since July 2017 when I incurred an antibiotic injury, and it was becoming obvious I needed more help around the house.

After undergoing the first assessments, I was approved for hours and set about trying to match with a caregiver. The first few matches yielded not only a label for myself (“difficult”), but I also started realizing my own needs were a bit more complicated than I initially considered.

Over the past few years, I’ve received more than a few answers regarding my mental and physical health and ability levels. I recognize and accept that I require much more support than I previously thought.

But with proper diagnoses, comes coping strategies and systems of assistance.

Recognizing I have Ehlers-Danlos Syndrome allowed me to make my home accommodating towards my multiple mobility aids and understanding every day is different.

My caregiver Timothy and me at Pride

My most significant answer could have come with the autism diagnosis last year. My noise-cancelling headphones to help with my lack of ability to process sounds changed my life.

Realizing many of my “hobbies” are actually autistic special interests and there are reasons I spiral and lose days upon end with an interest is NORMAL in the world of autistics, is comforting.

Within all of these diagnoses have brought challenges for both my caregivers and myself. But I’ve been fortunate to have several caregivers that have been long-term and have felt like additions to my family.

Harper

When my newest caregiver started last October, I wasn’t sure we would mesh. After all, she was almost as young as my teenage grandchildren.

I soon got used to her talkative nature and we learned we had a lot in common. She and my other carer, Timothy, have become a family for me.

Harper was efficient: She turned in her notice almost 11 months before she knew she would be leaving. There was never the illusion her position would be any more than temporary with me, but she hasn’t worked like it was a temp job.

Much to the contrary: Harper took control of a caregiving manual I had attempted to create to make it easier for caregivers to be trained in my particular needs, she also found tasks that I was struggling with, like making professional phone calls, and make them her own.

Harper getting ready for graduation

These last few months, I’ve often become a bit melancholy thinking about the fact she is moving on. Celebrating her graduation from Community College with her this last week was bittersweet. It means that her starting university in September is that much closer.

I’ve had many caregivers over these past few years. Some absolutely frustrated me, others left in protest due to their own health needs. But this team of Timothy and Harper will be difficult to match. I’m spite of that fact, it is time for me to begin looking.

I placed a few ads with a hurt in my heart. But Harper was still anxious to help be a part of the transition. But no answers to the ads ever came.

As we headed into September, Harper was getting nervous for me and Timothy and I began making plans to do our best to do without a main caregiver.

My little caregiver family at Pride

I desperately shared my piece about the shortages of caregivers, and created and shared videos about my situation.

I finally made a connection. They are new to the system, and I have an opportunity to teach about the position as well as the system that governs it.

I’m excited about this new chapter of my disabled life, but I’m sad to see Harper go. I AM thrilled to continue to have Harper as a friend.

Harper

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