Others step in when you need it most on the caregiving journey

I was recently asked about my caregiving journey. It’s been long, strenuous, challenging, rewarding, heart-breaking, fulfilling, and relentless. We recently moved mom to a new community focused on caring for those with dementia. I immediately lost one of our long-term caregivers, and then a second regular within the first two weeks. My mom’s not integrating into the scheduled activities. I got enough calls about it that I met with the Executive Director who suggested we consider new caregivers. This week we are trying out two new assistants to help get mom in synch with her new community. I know the change isn’t good for her, but for the short-term, I know if we get her to participate in the scheduled activities, we can get the extra-assistance out of her room.

She is now in a smaller room and the caregivers are with her from 8 a.m. to 8 p.m. She doesn’t like that others are with her. In her old community, they could sit in a connecting room and she didn’t know they were there. Now they are within a few feet of her during the day and she’s choosing to sleep more.

My golden rule with mom: If it doesn’t make her happy, don’t do it. I am trying to figure out how to get her more independent so we can eliminate the personal daily assistants (pdas). To do that, we need her to engage in the community. This challenge is weighing on me. Thankfully, I have very engaged siblings and my brother and his wife are coming to town to visit with mom this weekend.

Yesterday, a volunteer with the hospice company called me to ask if she could stop by and visit my mom? YES! I call her back to share more information about my mom and she tells me she will stop by to visit mom at dinner. I know my mom with enjoy company for dinner. She sends me a nice text after her visit and tells me she will visit her again on Friday.

This woman is a ray of sunshine to me. She has no idea that for decade leading up to the early signs of dementia, I ate dinner with my mom every Tuesday night, and then my parents came to my house for dinner every Friday night. The reconnection to this memory brings a smile to my face and the idea that someone else will stop by to visit mom in her new community and have dinner with her every Tuesday and Friday night brings joy to my heart.

The journey is long, but there have been and will continue to be so many people who have walked with me it makes it easy to continue on. Appreciated.