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.

To sign up to walk or donate to our team, click here: http://act.alz.org/site/TR?fr_id=11244&pg=personal&px=6927309

On Transition: Move questions answered, #2

What has the transition meant and ‘looked like’ for me (Ellie)?

{artist creditt: Mari Andrew}

I’ve already shared a bit about the grief that came – and has continued to infiltrate my days since moving Mom. I won’t belabor the point, but I stumbled upon this graphic (via another writer/artist – Mari Andrew) in how she feels/carries the grief of the loss of her Mom.

I found this to be an accurate and helpful metaphor that I’ve clung to lately. The one distinction for Alzheimer’s care is that you are grieving with the person in front of you, and so it’s as though you begin carrying a smaller ‘grief handbag’ even at the outset of the disease. When Mom moved the grief morphed and felt bigger, heavier. Five months later and it’s still at the forefront of my mind, but with less significance. And I imagine that the weight of it all will continue to shift – grow and then diminish – occupying so much of my heart and headspace, then fading into the background, occasionally (and unexpectedly) reemerging, but ultimately never leaving. That has felt true to me, especially in recent months.

Beyond the grief, I am adjusting. I find it hard to find a balance and rhythm for going to visit Mom. Just as when she lived with us – there are good and bad days. Some days I go over and visit and we have a wonderful time and she’s happy throughout, and I feel like we’ve both been lifted by the chance to see one another. There are many other times, however, when I go and she’s upset when I arrive and the visit is sour, or worse she’s content when I arrive and my presence (and the reality of my departure) diminishes her good mood.

The unpredictability sucks; my main method of coping is remembering that this was the reality of our days when Mom lived with us, too. There were so many variations to our days – to what Mom could recall, how she could communicate, and what she wanted. So I am trying to find a rhythm of seeing her 2-3 times a week, and always going with the hope of joyful time, and not being discouraged or disheartened if/when it turns out differently.

The last challenging adjustment has been in figuring out how to communicate with the staff about her care. The moment we moved her in we passed the baton of quotidian care on to the (wonderful) staff at her new home. It has been a strange period and process to accept that the staff are now the primary experts on the day-to-day 'Mom things'. They are the ones who observe her days, her behaviors, and testify to how she is progressing. It has felt challenging to balance deferring to their observations and insights while still maintaining a grounding in how much I know of my Mom, and even how much I know of her disease based on being her caregiver and advocate for the past five years.

Thankfully the staff at her new home are incredibly committed, above all, to doing what is best for Mom, and for helping me stay connected and involved in her care. I am grateful for their patience and generosity (both with Mom, and with me). It feels like we (myself, Mom, and Mom’s staff) are working this out together, and it has definitely been a learning process.

{Mom and I, at her 60th birthday. I love everything about this photo}

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 

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 

On Transition: Part 1

We've experienced a significant amount of change since the Alzheimer's walk last year. The most notable is that we decided it was time to move Mom into a Memory Care unit of an assisted living facility near our home this past spring.

Again, I think if I am being most honest about what the past year has looked like for us, and what Alzheimer's does to a family, it will entail being pretty raw and very sad. I want to spend this week and next writing about the transition, and have decided to start by sharing about how I experienced and felt about the move. I tried to sit down and pull something coherent out of my mind, but already felt a bit too far removed to find the right words. Instead I ended up flipping through my journal from a few months back. While this is relatively personal, I think the best way to share a snapshot of what this past year looked and felt like is to extract my words from a few months ago.

Next week I'll share a bit more about how Mom's doing -- less feelings and the grief that came in the immediate weeks following the move, and more general observations of what the transition has meant for us both. 

We moved Mom on a Sunday - March 11th. The day before we had a big birthday party. All of her friends came in from all over the southern USofA, and we laughed. Mom beamed and hugged and delighted in the presence and comfort of all of her favorite people. All in all it was a roaring success.

That Sunday -- I can't fully remember the weather... I think it was cool, cloudy, and not raining. I ran around frantically but adding no value. And still, things went quickly and seamlessly. When it became obvious that we were going to pull the move off with relative ease I still felt some shock and disbelief.

"I can't jinx myself!" I said, laughing to cover my anxiety; joking with those around me.

Still, nothing went awry; it all went smoothly -- providentially so.

And yet, the week after, as I answered so many questions of "how is she doing?!" with positivity and genuine relief - I was stricken, haunted with loss.

Most evenings that first week I was running over to her new place for a visit, and I invariably found myself with a sharpie in my pockets. I found them in my robe, coats, pants pocket. They were always on hand, standing ready as I constantly found myself marking up more items with her initials to take to her new home.

 And then the nights... previously at nights when I would wake up to go to the bathroom I would walk gingerly in, trying to stay quiet. However, by the time I'd reached the toilet I'd often hear Mom stirring directly below me, woken by my rising and going through the same motions in a half-awake/half-sleeping disorientation.

That first night without her in our home, as I lumbered to the bathroom I felt swallowed by a sadness, an unexpected loss of security in knowing she wasn't below me. This was strange...so strange to me. Mom's presence had offered Charlie and I so little security. If anything she needed care from us and often added to our stress.

 And yet, once she was gone I felt the real loss of her presence. I realized how much seeing her as we rotated and moved through our days was still important. She has remained so much herself that even though her Alzheimer's-induced repetitions and losses drove me nuts, that her small quirks and behaviors -- her smiles, her sassy stomping, the way her eyes lit up in the morning, all of that meant something. The unacknowledged presence of her body language and her spirit - I suddenly felt it's absence. I'm lost in the grieving of something (and someone) I had begrudged at worst, or something I had failed to recognize and cherish at minimum.

It haunts me and hits me when I look across the dinner table and she's not sitting there. I feel a tortured sorrow when she's not fumbling her way out of her bedroom as soon as I come downstairs most mornings.

"This will be a great time!" a friend told me "You'll just be able to visit with her; you can be her daughter, without all the daunting challenges of caring for her."

I hope that is true. I do feel relief and less anger in her absence. But I'm so sad for the way the emptiness taunts me and reminds me of all I took for granted. It blurs and undermines the relief, and consumes all the space in my brain, the air in my lungs. 

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 

On Burnout

Here it is, late July, early August, and you're finding me hunched over my laptop late at night. I'm trying to crack my head and heart open. (But - you know -only for a set amount of time, because I've only allocated a precious 45 minutes to this task before I throw myself into the next thing.)

I've mentioned in past years that, while I find the Alzheimer's walk empowering - especially on the day of the walk, at the end of the journey - that in the beginning there's always dread. There's always the exhaustion of public disclosure and vulnerability. Being the caregiver, at the helpless and thankless end of this disease is at times exhausting and demoralzing. 

And I don't just have to feel vulnerable here. I feel it daily -- when I choose to be direct with others about my Mom's disease and share a tidbit or two of the challenges in a casual conversation. Friends, coworkers, and family are always incredibly generous in extending empathy and understanding. But even still, I feel it - a small, seething anger at how I feel othered because, no matter how empathetic someone is, it's unbearable to speak directly, acknowledge directly, how shitty and helpless Alzheimer's makes it's victims. How it dismantles and exposes, overpowers and unravels the afflicted and their community.

When I choose not to speak because it feels like it will distance and isolate, I also feel helpless. I feel a tinge of sadness. I fight back a quiet envy that creeps in - of others who have parents on hand to help babysit at the drop of a hat. I long for the ease and lack of worry of those who are fixated on things that seem so trivial in comparison. And while the person, in that casual conversation does not even know it - I feel vulnerable and tired. I find myself exacerbated by my inability to hold things in better perspective, compare less, be more grateful for things in front of me, or that I can't step back and take a break if and when it's needed.

This year, as I prepare to walk I feel a heightened level of frustration that not only do caregivers experience the burden of caregiving, but that the brunt of trying to raise awareness also falls on our shoulders. 

In all honesty - I don't want to walk this year. 

I am tired of posting these entries -- annoyed when I hear the voice of some chirpy staff member of the Alzheimer's Association at the end of a call, disrupting my work day to encourage me to 'reactivate my team!" 'Join a bank day!' 'Get excited for the walk!"

I think it all boils down to the lack of options. There is no cure for this disease, so the best we can do is raise awareness (and subsequently, raise funds for services for victims and caregivers, as well as for research). And so, for those of us watching this disease ravage our family, if we don't advocate then it can often feel as though we're giving up. Even in our choices to fight this disease we are disgustingly limited - and our options to take action involve more time, more energy, more exposure. And we are already so, so spent.

All along the way, this has been a journey bounded by our limitations and marked by loss. Walking each year and advocating, while empowering at moments, is not without it's own challenges. But if I look to the other side of this anger, and key in on the other biggest takeaway of the past six years, I'll find my Mom's resilience and her fighting spirit shining through - piercing my anger and my hardened heart. She has been continued to be my inspiration; her endurance is the driving force that compels me to keep doing this damn thing, year in and year out. And so I will keep walking, even when I am weary and even when I am angry.

While I am walking this year, I will not only be walking alongside my Mom, but I will also be walking for those who are weary. I will be walking for those who are no less angry, no less committed to ending Alzheimer's - but who don't have the energy to carry on. The gravity of the absence of so many caregivers and victims of this disease should embolden the steps of those among us who can come out. It should ignite a fire under those of us who are able to keep going. If you are able, I hope you'll join us.

Click here to donate to our walk team or register to join: http://act.alz.org/site/TR/Walk2018/KY-GreaterKentuckyandSouthernIndiana?px=6905271&pg=personal&fr_id=11244