On transition: Last move question, answered

Today is the last, and most important move question to answer.

Writing and sharing about Alzheimer's this year has been so much more focused on my voice and how I'm doing. I think much of this has been because Mom has a hard time communicating and I struggle to speak about or for her without her ability to process and 'validate' my perceptions.

But today I'll do the best I can to share my thoughts and perceptions on how Mom has handled the move.

What has the transition meant and ‘looked like’ for Mom?

As I mentioned in my last post – it is difficult to articulate or describe how Mom is doing or what her days look like in a clear and straightforward manner. As she has lost language to speak for herself, we are dependent primarily on observing behaviors and emotions, and so much of my ability to understand her story from her own perspective is lost. Additionally – it’s never a simple, single narrative.

To put Mom’s perception of her move in context, I’d actually need to go back to 2016/2017 and oft-held arguments that Mom and I had. Mom went through a phase where she would get very angry at Charlie and I about daily things – if we made supper late, if we went out with friends and left her in the house alone for few hours. In those instances, when I was at my worst and unable to walk away from the argument, things would escalate and Mom would get mad, threatening to move out. (Sometimes she would even start taking pictures off her walls, or storm out of the house and bolt down a neighborhood street, at which point we’d have to chase after her for fear she’d get lost.(!))

This is not the most flattering of snapshots of the past six years, but I share it because the sentiment of Mom’s desire to move out, live independently, or simply do small things to maintain autonomy was a thread that was woven throughout our recent years together. I felt and perceived it acutely, and understood it well. It pissed me off to no end, and yet I also cherished it – as it was so bound to who my Mom is – her fierce independence, desire to take action, hunger to be in control.

The desire to move out emerged from so many different frustrations of her days, sometimes because she felt like we were restricting her independence. On other days (often even at the end of the big fights I described – when we would have a breakthrough, or Mom would have a moment of clarity) Mom would perceive how stressed or how worn out I was, and she would communicate as best she could that she wished she could move to give me space…to lessen the burden we were bearing in caring for her.

And so, when it came time for Mom to move I really strove to frame it as an opportunity for her to

have her own apartment, her own home and space, her own space in which friends could visit and she could come and go to events as she pleased. Although her language was diminished and she struggled to understand, I believe she welcomed the move in this way. There were days as we planned for the move (and even after) where that was how she understood and felt about the change. She spoke of it in an excited way – leading up to and when we first moved there. She relished how beautiful her new apartment was, and took pride, in broken sentences, when she talked to her friends about how the boys and I could come visit her and go swimming with her in the pool within her apartment complex.

Many days the move seems to feel to Mom as though she has established some semblance of independence – including in the more regular care she finds in the community at her new home.

Other days, I can sense that Mom feels bound to a more traditional and bleak narrative of being stuck ‘in a home’. There are moments where Mom follows me to the door when I leave, and begs me to let her come with her. She now often seems confused about if her home is her apartment – whether or not I can stay with her or she can come with me. She has loved the staff dearly, but the early days and newness of her friendship with them has faded and I regularly observe where she has flashes of anger at them, frustration that they won’t let her go or do things as she would like.

Mom has seemed to respond to her move just as she did in the transition to our home – with a mindfulness of relief at having more care and a comfort from the staff around her, but also with some remaining ability to grieve what she lost – in missing seeing the boys, Charlie, and I on a regular basis, and wishing she had elements of autonomy that she had when she lived with us, and even more of what she had before Alzheimer’s limited so many of her freedoms.

Finally – to speak at a basic level of what her days look like, I’m thrilled to share that we found a fabulous place for her, which means that her days are filled with a blend of a regular routine that is enriched with lots of different activities and outings. One thing that I love is the unpredictability of knowing if Mom will be home when I go to visit. She is constantly embarking on adventures with the other Memory Care residents – out to the arboretum, to plays, out for a meal, and to different community events. Early in the summer I went to a local festival with friends and happened to run into my Mom, her staff, and fellow residents as her staff had organized an outing to the event. It was so fun to just ‘bump into’ my Mom out on the town, and I was thrilled to see her grinning from ear to ear on our happenstance encounter.

I will also cling to the memory pictured below, from about two months back. I had a rare free afternoon and decided to stop by for a visit on my way home from work, just she and I, no small boys in tow. Upon arrival Mom’s staff shared with me that they’d been to the aquarium that morning and that she had soaked it all up – crept in the viewing areas under the penguins for silly photos, delighted in the glass walkways where sea creatures swam overheard. I could see the thrill of the day in her smile.

And after hearing that story, she and I walked out of the Memory Care unit and into a quiet courtyard where we sat in the shade – enjoying a lovely and surprisingly cool summer afternoon. She noticed my earrings and commented on how much she liked them – a rare and special occurrence, as Mom struggles to make small observations or speak to these types of details lately. I loved the earrings she had on, and so she proposed we swap for the day. We both giggled and laughed as we fumbled through the exchange.

In that moment, I was grateful for such an unassuming, basic mother-daughter moment. I was grateful that she felt at home in that place. Grateful that, even while this unique moment might not be the norm, that we had found a rhythm to our days, post-transition. And within the busyness and the separation, that we could still find time and ease in simply sitting with one another, in a peaceful courtyard, catching up on silly, trivial parts of our lives.

Mom has adjusted to a huge life change with continued resilience and eye on the possibilities it has afforded her. She has clung to the parts of herself I love most – enthusiasm for being around her friends and loved ones, excitement for new adventures, and gratitude for the kindness her staff show her on a regular basis. I am incredibly grateful that she has been so receptive to this change – seemingly open to the elements where it has given her independence, and to the strength she has shown, even amid tears and holding me close when I can tell she hasn’t wanted me to walk away, when it has been hard and difficult to bear.

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