On Transition: Part 2 - The big move questions, answered in 3 posts

{Mom and Moss at a nearby park, mid-summer 2018}

Last week I wrote about my Mom’s transition into a Memory Care unit from a very personal view – detailing how the shift in the makeup in our home was a watershed moment for experiencing a depth of grief and loss that I had been avoiding when Mom was living in our home.

This week I wanted to talk about the transition from a more practical perspective. As I sat down to collect my thoughts - there are three questions that I find myself speaking to as I talk about the transition:

1. How did you make the decision to move your Mom? (And subsequently I often heard: how are you doing with the decision? I imagine it was challenging…)
2. What has the transition meant and ‘looked like’ for you (Ellie)?
3. What has the transition meant and ‘looked like’ for your Mom?

I started writing about these and it became a looong post, so I am going to answer one question each day over the next three days. Thanks for sticking with us, and for all the love and support you’re showering on our family as we lead up to the Alzheimer’s walk this week!

How did you arrive at the decision/know it was time to move your mom?  

I was slightly caught off guard by how many comments I received about “how difficult the decision must have been” to move Mom. I understood that response grew out of a general understanding of the difficulty that comes with transition. But I also noted in some instances when this was said that there was some implicit need to have had to grapple with guilt as a result of moving my mom out of our home and into a facility.

I was a bit vexed by those undertones, especially because I did not feel any guilt in the months leading up to, or in the moment of, moving Mom. (And mind you, I don’t think that anyone whose comments had these undertones were implying that I should feel guilty; if anything I think they all longed for me to feel relief and freedom in the transition.) But nonetheless I was a bit upset that there’s an underlying presumption that you should grapple with guilt for ultimately ‘putting your parents in a home’, especially when it comes to the realities of life for late-stage Alzheimer’s patients and the resulting demands placed on their caregivers.

Years ago I had friends who provided sage advice and words of comfort to Charlie and I are the outset of our caregiving journey. One of their biggest pieces of advice was to find your boundaries and demarcate what is needed for self-care. They shared that, in their experience, they reached a point where they recognized that they had to be almost completely self-sacrificial to respond to the caregiving demands of their ailing family member. In that season they observed a reality -- a recognition that the return for all of the care they were pouring into their sibling’s increasing needs resulted in a marginal/minimal increase in the quality of life that their sister gained from the ability to continue living in their home. (And, if anything, they hit a point where they felt she would ultimately have a better quality of life in an Assisted Living facility, where she could receive round-the-clock care but still maintain some level of autonomy.)

In hearing their story, I recognized early on that this would be the reality for Mom and our family as well. It sounds brusque, or utilitarian to discuss these kinds of trade-offs. But when you face an illness that will, inevitably, require around-the-clock care (which includes dressing, feeding, and toileting) there are very straightforward and clear questions -- of what you can handle, your boundaries or limitations -- that need to be considered and accounted for.

As a result of this conversation, I sat and thought through my personal boundaries for my own ability to care for my Mom while maintaining my personal goals (career, and hope to start a family – which came to fruition). I knew that as soon as she began needing assistance dressing on a regular basis, going to the bathroom or eating food that I would feel incredibly overextended and be unable to continue balancing care for the rest of my family (and myself). I grappled with this early on, years ago when Mom was still happy, communicative, and very present. And as a result – when some of these signs began to occur, I recognized what they signaled for our home dynamic, and quickly launched into planning mode to set things in motion for her move. I felt very little remorse, and if anything felt relief that Mom would have some dignity when we moved her, that she would receive constant and tender care from someone who wouldn’t feel as emotionally drained or overstretched.

I’m not sharing this to speak to what choice others should make in my situation, nor am I framing this in a way to complain about those who implied that my decision should have been hard or guilt-laden. I just wanted to delineate my thought process as I found a lot of freedom in being able to preempt
some of the decision-making process, to detach myself from the pain and the narrative of ‘putting my mom into an institution’ by getting such good advice from my friends at the outset, and picking very clear boundaries for Mom and I long before they started occurring so that I wouldn’t have to feel trapped or guilty when the realities of my Mom’s disease and later stages began to set in.

To sign up to walk or donate to our team, click here: http://act.alz.org/site/TR/Walk2018/KY-GreaterKentuckyandSouthernIndiana?px=6905271&pg=personal&fr_id=11244