Alzheimer’s Walk Reflections: How to Care for Your Caregiver

Much of my reflections about ‘why we walk’ have shifted in recent years. As Mom has lost her language, I’ve been reflecting more on my experience with the disease as Mom is no longer able to vocalize things from her perspective. This is hard and challenging, but also an accurate depiction of the late stages of the disease. As Mom’s memories and capabilities fade away – she is losing her ability to be present, and as a result it feels like many of the challenges – the logistics of managing her care, the hard choices, and the grief of incremental loss, are felt much more acutely by myself, my immediate family, and Mom’s close friends.

As a result, I think the voice and needs of Alzheimer’s caregivers are integral to this disease – and I wanted to take a few moments to share tips for how to care for your friends that are Alzheimer’s caregivers. 

Tips for Caring for Your Caregiver:

    1. Ask how the person is doing, and be ready to listen.

This is probably the biggest thing you can do for anyone who is caring for someone with a chronic illness. I know it’s always awkward when a friend is caring for someone who is terminally ill to know how to bring it up – do you mention it/ask? (What if they don’t want to talk about it? What if they do?)

In my experience, caregiving is at the center of my headspace – and a key element of every day. (This applies even now, when I am living away from Mom.) It is constantly on my mind, and so I am never upset when people ask; I am always grateful that people recognize that this is an important part of my life – and it has become a huge part of my identity.

What I would recommend is that you let the person who is caregiving lead on how much they want to share. Some days I really want to talk about and process whatever is on my mind at that moment. In other instances, I don’t have the energy or mental space to open up and so I offer shorter/more curt responses. (And my hope is that friends know that shorter/more summarized responses are not meant to indicate I am ungrateful for being asked, but often just mean that I don’t have the ability to be as vulnerable or decompress in that moment.)

My other piece of advice, (and this applies whether or not the person chooses to open up) would be to Comfort In, Dump Out. There is a complete and helpful article on this here – but the main premise is that, for the person in crises you split their social network into circles of who they are closest to. (The center circle would be a spouse, best friend, immediate family members; next ring out would be close family and friends, further out would be acquaintances, etc).

The basic tenet then is that the person in the center ring can say anything she wants to anyone, anywhere. Everyone else can also say these things, but only to the people in the outer rings. This allows the grieving person/person closest to the crisis to not be put in a place where it feels like they need to do the emotional work of carrying the burden for someone else, when they are already so focused on the immediate needs of the person they are caring for (as well as their own grief and/or trauma).

As soon as I saw this article – I saw this to be spot on. Often the best way to help someone who is caregiving is simply to listen. When you feel at a loss for what to say “I’m sorry” and” “that sucks/is so crappy” are honestly often the most helpful replies. Even if they don’t feel complete or full enough as a response that you would like to give, know that you are giving a gift in offering a listening ear – and in being willing to sit with the discomfort of watching your loved one struggle without running away or being defeated by the helplessness.

One last point that I’d offer specific to Alzheimer’s – many people are very familiar with the disease and often want to offer anecdotal stories to connect. I have heard countless times “my grandparent had this, so I know how awful it is…” etc etc. While that statement is a helpful way of indicating that you are grieving alongside the person, I’d share that I’ve also heard people say “my grandparent had Alzheimers, so I know what you’re going through.” While I know that the person means well, that statement often stings – while there is some shared understanding is knowing the symptoms of the disease, I feel jarred and frustrated by the stated assumption that another person who is not a primary caregiver can relate fully to my experience. I am not trying to invalidate the immense pan or shared grief - but only seek to highlight that I struggle to relate when this is said by someone who isn't a primary caregiver, as watching someone battle Alzheimer’s through the lens of occasional visits feels different than being the child/spouse that is the primary caregiver for someone who is suffering. To me, I have also felt a gap in the loss my Mom experiences as someone who got sick at 54, versus people who are diagnosed in their 70’s or 80’s – both experiences are awful and wretched, but there are vast differences. It should not be a matter of comparison, and I don't seek to make it such (as grief and pain are hard, no matter what). But when I hear them aligned/compared in the same breath it can feel painful – and thus in general I’d recommend avoiding seeking to compare to an experience to acknowledge the suffering.

    2. Be present and offer specific ways to help.

When you know that someone is going through a tough time – the best thing you can do is offer specific ways you can help. “Let me know how I can help,” while well-intentioned – puts the onus on the person caring for someone who is sick to come up with and articulate, what they need. While this offer is generous in the willingness to do whatever is asked, if the caregiver is in a season of providing care where they are over-taxed, exhausted, and stressed, it is often a lot of work to even find time and think through what would be helpful to then. Additionally, there’s an added pressure for them to be vulnerable in having to reach out, articulate, and ask for the specific type of help they need – at risk of having someone say that they are too busy or unable to offer it once a specific type of help is articulated. 

The best thing you can do is offer specific things to the person in front of you. Examples include:

“Can I bring you a meal next week?” (“Can I organize a meal train?”)

“Can I babysit your kids for a few hours so that you and your partner can get some time away?”

"Can I come over and hang out with your Mom so that you can get some time to yourself (or go get XYZ task completed)?"

Our family and friends have done a million different versions of this – driving from hours away to come offer support – coming up for a simple visit in which they take me out so I can cry into my beer with them, offering to paint my home with me/help me move, driving up to join us in the Alzheimer’s walk, etc. My family has been an incredible example of this – when I lived in Kentucky my aunt had my Mom and brother over for dinner once a week so that Charlie and I had a dependable night in which we had a break. (This was HUGE for us.) Our caregiver/very dear friend/framily Selena was unendingly generous – offering to go out of her way to run an errand that I might mention I needed to tackle, unexpectedly offering to keep my boys an hour or two longer so I could get away with Charlie, brightening our home with flowers or bringing over a surprise  breakfast/dinner dish. And in windows when my brother got sick (on top of caring for my Mom) – friends of my Aunt, my Mom’s friends and my church family brought meals to help us pull through, so we could cope with other immediate challenges at hand.

 These tangible, specific offers of help were our lifeline.

     3.   Give the person grace when the small, daily things slip.

This point is much subtler, but just as important. One of the most felt elements of the past five years is that I didn’t have enough time, didn’t have enough energy. I have felt so stretched over a long period of time, and as a result much of my ability to focus and stay on top of daily tasks has suffered. 

Over the past five years, I’ve become somewhat rude and thoughtless by necessity at times. There are hundreds, (maybe even a thousand?) unwritten thank you notes for all the small, generous kindnesses I’ve been shown. Prior to my Mom’s illness I was a very intentional friend – one that would call and check in, keep up with so many people in my network – send messages, remember birthdays. So many of these small habits have faded away.

And beyond the upkeep of friendships and social cordialities – I have missed deadlines – dates where I’ve needed to submit paperwork for insurance for my Mom, forms for my boys’ pre-school. I’ve forgotten to communicate with our family caregiver about pick-up or drop-off times. Now that I’ve moved, I’ve been behind the curve on letting people know when I’m coming to visit and scheduling appointments. In these instances, almost every time, when I’ve explained the situation I’ve found so many people have been willing to extend grace – to forgive my oversight and spaciness, to understand my absentmindedness (or lack of presence as a friend). This has been such a huge and important element to getting through the past seven years, as it’s allowed me not to beat myself up for feeling behind the curve – and it’s allowed me to stay connected in friendships even when I don’t reciprocate as much as I would like. It is a gift, and one that I am so grateful for.

    4.  Stay the course/stick with your person.

My last piece of advice would be to stick with your person – especially if they are caring for someone with a chronic illness that will span the course of years (and maybe a decade or more). One thing I hear from many Alzheimer’s caregivers (and feel myself) – is how Alzheimer’s care feels different than some other serious, fatal illnesses. When someone is diagnosed with cancer or a terminal illness – many times the recognition of need for care is immediate and folks rise to the occasion that is absent for those caring for someone with a mental illness, or with something that is degenerative over a longer window. 

I would just say that if you are close to an Alzheimer's caregiver  – that you make a point to check in at random. Consider putting reminders in your phone a few months out to check in with them – or send a meal or card, at random. Let the person know you are thinking of them – send a book, or a poem, or a starbucks gift card, when they least expect it. Lift up a prayer or meditation on their behalf on a regular basis, and send a quick email or text letting them know that they've been on your mind. (Even if they don't respond, as per point #3, know that it will be appreciated!)  As this Op-Ed articulates – seek to ‘be a builder’ and to be there for the long haul. The consistency of your presence will be a gift of acknowledgement that the journey is long and a recognition of the potency of grief and it's potential to grate and hollow out when it's present in such a long and arduous battle. In return – seek to provide comfort and respite for your person in small, incremental ways throughout the length of their battle with the disease.

To sign up to walk or donate to our team, click here: https://act.alz.org/site/TR?pg=personal&px=6905271&fr_id=12589

Alzheimer's Walk Reflections: On my year as a long-distance caregiver

The phone always rings between 10am and 2pm, during standard business hours when I am sitting, exposed, in my cubicle at work. I stare down at the number on my phone and recognize it. I’ve managed to memorize the number, but have refused to actually save it in my phone contacts because it’s permanence and presence looms over me enough. Subconsciously, I suppose, I don’t want the Memory Care number to have an established place in my daily life – or at least don’t want to give them the thirty extra seconds of my day it would take to save down the contact information in my phone.

“The phone number is burnt into my memory, that’s space enough!” I think, as I quickly reach over and answer the call.

These calls from Mom’s assisted living facility, and how they are an unexpectedly expectant part of a quotidian workday, are the best encapsulation of what the past year of transition has been like. In the fall of 2018, almost immediately after last year’s Alzheimer’s Walk, my boys, Charlie, and I packed up our lives and moved to Washington DC. I’d applied for a new position within my organization, one that put me back on the trajectory of international work that I was most interested in. When I was offered the role I was told I would need to relocate to DC. Charlie and I took stock of where we were and our family’s collective goals, and decided the time was ripe for change.

While we were excited about the change, aspects of the move was difficult and painful; we’d finally built up a rich community in Lexington, even in spite of caregiving demands and time constraints. And I was heartbroken to be away from Mom and the rest of my family, stripped of the flexibility to breeze in and out for a quick visit or two each week. But I took heart in knowing that it was the right move for my husband and children, and that it personally meant more career fulfillment and greater opportunities in the future. I knew that if Mom were well and herself, she would be encouraging me to do it – cheering me on.

{photo from a visit with Mom in Spring 2019}

A remote move, especially with small children, is no small feat. But Charlie and I were pleasantly surprised with how smoothly it went. We had friends on both ends of the move that jumped in to load, drive, and unload the truck. When we landed in DC we were thrilled to find many close friends from across seasons already living in town. Community and routine came relatively naturally.

The adjustment into a role as remote caregiver has been somewhat bumpier, but with a caveat that the logistics and assurance that mom receives excellent care has been seamless. It came as no surprise that my family in Lexington and my Mom’s legion of friends continued to help day-in and day-out. They visited (and still do) faithfully. They call and text with occasional updates, and are always willing to step up and help if issues arise.

The bigger challenge on my end has been trying to juggle how to maintain the headspace and attention to my Mom’s care when I am so distant and managing so much as I adopt to my new life here. The calls (as described above) from her Memory Care unit are always helpful – updating me on a small incident (where Mom might have fallen, or started exhibiting an unseen behavior) or asking me to secure more items of hygiene care. However, in spite of their helpfulness I often feel caught off guard by them. They can come at any point in my workday, and I never know if a call is for a smaller need, like buying a few new items for Mom, or something much bigger – like a fall or health issue that has arisen that requires immediate attention. When the bigger issues come up, it unravels my mind and interrupts my day with an unexpected force. I find myself much more quickly overwhelmed by the tasks that come, and much less steadfast and level-headed than I was in Lexington.

An additional challenge is trying to get a pulse on how Mom is doing. I speak regularly with the nurses, and family and friends who are visiting. While everyone gives me helpful, detailed accounts of what they’ve seen and observed of Mom – so often anecdotes conflict. One friend who hasn’t seem Mom in a while will report about how quickly she’s deteriorating, in the next moment a staff member at Legacy will give me a readout of a great day that she’s had, and a week later I’m speaking with her doctor about a newly emerging, problematic health matter/behavior. What’s most daunting is that no one’s account is untrue or even over-dramatized or incorrect. The nature of Mom’s illness and the rapid progression we’ve observed over the past year often translates to the fact that Mom’s well-being and reality can shift day-to-day, hour to hour, even between moments. It feels daunting to monitor from afar, and I remind myself it would still be nearly as challenging if I were checking in on her myself. But this still doesn’t abate the concern I feel from the distance – from the lack of ability to be there and see firsthand.

{from a visit in fall of 2018}

Lastly, the final challenge has been coping with the grief that I’ve felt since the move. Now that I am no longer in Lexington and caring for Mom in an intensive way, on a daily basis, I’ve had a lot more space to process the loss. In coming up for air after five years of demanding caregiving challenges, I’ve begun facing much of the pain and grief that I previously compartmentalized in order to cope and stay standing when so many people needed so much care from Charlie and I.

Now that I am in DC, I find myself constantly thinking of Mom. I walk to and from work daily, and hardly a day goes by where I don’t feel a pang of sadness -- wishing that I could call up my Mom and chat about everything and nothing as I walk home from work. When I post pictures of my boys to our family’s shared photo album, or catch a funny story I want to share, I daydream of telling my Mom about it – of saving it up for her next visit, or sending a quick text her way. I think of all the questions I might have asked her about her years as an early parent as I nurse my newborn late at night:

Was I a good sleeper? 

  What about Corey? 

   Remind me – what was your labor and delivery like with each of us? 

    Were you ever unsure and afraid? 

     What was your greatest joy in your early days of parenting?

All of these questions filled the vacant spaces of my day in Lexington, but they were far fewer when I was caring for Mom due to lack of time, and due to the fact that I pushed them aside as a means to try and cherish and recognize that my Mom was still with me and still in front of me. The reality of the move and the lack of her daily presence has given me permission to begin to accept her gradual departure – and to sit with these things, often in silence and in loneliness. In a city where much is new and exciting, and where we have many good friends, I didn’t expect for the specter of the past years and my grief to loom so large.

So as we prepare to walk this year, we walk in part for caregivers – for those near, and for those who may be further then we like, battling unanticipated feelings of grief and trying to balance responsiveness for the immediacy of needs with the regular demands of their daily lives. I acknowledge that the distance doesn’t lessen the ferocity of love for your family member, and it doesn’t diminish the passion and intent you put into making sure that your loved one with Alzheimer’s is well cared for.

I am glad that I will have the gift of time to be in my Kentucky home and present – to have my Mom meet her granddaughter, and then to head downtown, yet again, and walk with the hope that our money raised will provide help and comfort to other caregivers – those both near and far from their loved ones.

To sign up to walk or donate to our team, click here: https://act.alz.org/site/TR?pg=personal&px=6905271&fr_id=12589

{from a visit early this summer}