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ROCHELLE NEWMAN-CARRASCO's avatar

I will always remember the caregiver journey for my father— it started with getting racist advice from my dentist (who was also my father’s dentist). I won’t spell it all out here - but he explained why the person needed to be Filipino after smearing every other cultural cohort. Then, I interviewed companies and got more innuendo about race/ethnicity. Annoyed and ignoring all of that noise, I found a great live-in caregiver for weekdays but went through 7 weekenders. You nailed it. Compromises- with a healthy dose of skepticism, suspicion and gut-trusting. As for pets, I will admit to being much more granular and involved than I was with my father. I wrote a 20 page manual to all the ways my cat and dog need to be cared for 24/7. Still, I know it gets customized and not followed but I have learned to turn that over to a higher power. Out of my control. My father died of a heart attack while the weekend person was there. I was out of town on business when I got the call. He didn’t like this caregiver and I discovered she falsified his signature and had him cash a check for 5K and she used his credit card at Target the day he died (which is what tipped me off to research finances). Anyway, I still feel icky about him dying on her watch — but I work through it. Sorry for this long comment but it struck a chord (as your beautiful writing always does.)

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Leslie Adams's avatar

Your title totally described my caregiver journey. My mom came to live with me probably a little farther along in the dementia journey, but I didn't realize it. I was so naive. I started with going to care.com and self-selecting someone. I went through 3 and also learned the hard way that mom needed much more care than I thought she did. It was a definite work in progress and my mom's dementia was the type that made her completely unaware of what was going on with her. She was often argumentative and would tell the caregiver to go home. Or she would tell them other things and they would listen to her. She had a strong masking ability of her dementia and often those that didn't know her didn't think anything was wrong. This often caused communication challenges. I would be the bad guy because my mom could be so charming and manipulative (this wasn't dementia but her normal personality) and then my mom would turn on them and they would be so confused. As I discovered that she needed more care than I first realized I went to an agency. Lot's more money but at least someone else was responsible for scheduling and would find replacements if needed. We went through several caregivers and my mom became known as somewhat difficult and I was definitely extremely hands on. I wanted them to communicate with me during the day. This sometimes conflicted with agency rules. Eventually we found a caregiver that stayed for awhile but she was very needy and in order to keep her around we ended up doing way too much. She also became very territorial over my mom and started trying to cut me out of the loop. We changed to another agency at this point and had much better luck. But as my mom moved into late stage dementia she needed someone more experienced in this area. Hospice was called in as well at this point.

Caring for my mom in my home was much more complicated than I ever realized when I first decided to do it. And the complications increased as the dementia progressed. It's a full time job ( and I have a full time job) trying to manage it all.

My mom passed in May having had an angel of a caregiver for 3 months who helped me be a better daughter. It was such a blessing.

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