Today’s post is from a longtime friend of Karen’s and mine who shared with me after my post about shifting my care during frequent mood changes (1/5/21 Shifting with Her Moods). Her sharing from her experience helped me, and I thought would be helpful for readers..
“ I read your Facebook post on shifting moods and it took me back to the 3-4 years we spent with my mother-in-law who had advancing dementia. I’d like to share with you some of my ‘learnings’ during that time—some from reading, some from learning from my communication mistakes. I hope they can help you realize that you are doing the best you can under constantly changing circumstances.
“I found that I had to give up my ‘teacher and reality orienting’ roles that I thought were so helpful. I read an article that reminded me of what I knew worked so well with children: meet them where they are, go into their world and let them lead you. I thought of that when Lynne said, “I hate this place.” Letting her know that “I hear you,” or “This is hard, painful,” or something to that effect helps validate what her reality is for that moment–she’d rather not be there.
… she went through multiple moods with tears, pushing me away, shouting at me, then smiling, focused, following me in and out of her apartment. “My MIL’s mood swings were a challenge for me—until I realized that I was taking them personally, thinking there was something I could do to make them better. My presence was my gift to her, whether her mood was positive or negative—I tried to be a sponge and just absorb and accept and witness them. It helped me that I knew she would quickly change, and, better yet, would not remember or “accumulate” these unhappy moments as memories.
I had not helped her.” I cannot fathom how painful it must be as a parent to be unable to take away my child’s pain, the one thing (after unconditional love) that we see as our role. But then I reviewed your description of your time with her. You gave her nourishment when she couldn’t do it herself, you danced and laughed with her when she felt like it, you accepted her following you in and out of her apartment— all with love and acceptance of the moment. It all helps—but those times cannot be exchanged like green stamps (if you remember them) to lessen those painful times for her. I will pray for more joyful times than painful ones, more movement and engagement than withdrawal — perhaps that is all that can be hoped for. Gems of joy to be gathered and returned to when times are tough.”
Dear James, et al.
An old SU friend reached out to me today to share with me about Lynne. My heart is heavy for you all. I knew Lynne in a few capacities- I worked at Montlake with the twins in the after school program, and then as Lynne took a career shift and I went on to grad school, we connected as a cohort in the Special Education program.
Lynne was unstoppable in her resolve. I can only think that the amount of brain energy she spent in a single day far exceeded many of us mere mortals, and her brain tired out before her body.
My grandmother lived a long life, but her final years were swallowed up by dementia. I watched it take a toll on my own mom as she took on caregiving roles, and found some relief in being able to provide some relief. My grandma didn’t know who I was by the end of her life, but my love for her was unwavering. As she imagined herself as younger versions of herself- I could not possibly have been in the picture. I had the joy of meeting my grandmother as a young mother talking about her babies, and as a wife wondering where my long-deceased grandfather was. I found fast friends in the memory care unit, not knowing their stories liberated me from having to correct what they may have been “confused” about. I learned on that floor that life is a great improv show, and that all the feelings are worth feeling- sharing with others the fullness of our joys and sadnesses, not valuing one above the other.
I am not sure if there is anything to offer other than to offer prayers and fond memories of the powerhouse that is your exceptional daughter, but if there are things that may be helpful to Lynne, the boys (surely young men by now- as they were teammates with my now college-aged cousin), or your family- I would be blessed to contribute.
Most sincerely,
Rebecca
This is perfect. So right in every way.
What a wonderful letter, keep it and read often.
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Jim, thank you for sharing this. I have also struggled with being unable to help Lynne. This gives me valuable insight and a reminder that it’s not about me. Of course, but so easy to forget.