Thinking through what the AHCA could mean for my Mom (and yours)

A post by a rang in my ears, and echoed a lot of my initial reactions as I read through the Senate’s version of the proposed healthcare legislation.

 'On my weekly visit to my mom I wonder - has anyone who supports this bill ever visited a nursing home? ...Surely they must've had some middle class family member who despite working their whole life, needed Medicaid to survive?'

This led me to think about our situation, and I just wanted to share my thought process – things I’ve learned about the standard trajectory of geriatric healthcare for someone with a chronic illness, and the costs that come alongside these services. 

Most folks my age (and even many folks in my parent's generation, I'd imagine) haven't sat down and mapped out the costs of protracted, intensive care services in a nursing home. Many of us also lack a full understanding of what is covered by our personal health insurance plans, versus what is covered by Medicare and Medicaid. Here is one important distinction that I think is captured well in this interview with Jane Gross, who wrote a book on caring for her aging mother: 

MARTIN: What's the one thing you wish somebody had told you before your mother started to decline that would have helped you?

GROSS: …I would say the other thing that I wish I had known was that Medicare, which most of us believe is universal health care for old people and that no one explains to you beforehand is that it covers procedures and drugs and operations and doctors, but it doesn't cover custodial care. So if your mom is home and you need a home health aide or you need somebody to drive her around or you need somebody to help her unpack the groceries, Medicare covers none of that. And it's hugely expensive. And you pay for it out of pocket until you're impoverished. And then Medicaid, as a poverty program, picks it up. I wish I'd known that.

This, was the biggest missing piece for me. Prior to caring for my mother, I hadn’t realized that Medicare services didn’t include respite care or any portion of coverage for nursing home services.

Additionally, over the past year, Charlie and I have begun researching costs. Average nursing homes in the Lexington area that provide full services for Alzheimer's care range from $8,000 - $10,000 -- a month(!).

To tie back to my story – I’d note that my mom has worked hard as an educator all her life. She was relatively frugal, diligent about saving, and has a great pension. However, it's still likely that we'll run her accounts dry with the rate of these costs if she has to live in a nursing home for years, as many folks do. And the more geriatric care books/advice sites that I read (and personal stories that I hear), the more I'm realizing this is the norm. Once personal savings and funds are dry - Medicaid kicks in. (*Also worth mentioning that this only applies to those residing in a nursing home where Medicaid is accepted, and often waitlists for these homes are 2-3 years long.)

As a side note -- these costs are inane/unsustainable and it's a huge burden/impact on the funding horizon for Medicaid. I'm not saying our current course is sustainable or that our existing health insurance structure addresses this growing gap in a targeted way. Reform is definitely needed.

BUT, the reality of the proposed changes in the Senate (and in the previous House) bill will have a hugely detrimental impact on the quality of care (and costs of care) for seniors, and will provide no reform needed to curb these costs or increase overall funding to this critical social safety net.  

I don't think this is something most folks my age are thinking about. Many folks in my mom’s (and in my) generation are beginning to realize what I missed on Medicare/Medicaid and starting to plan – through purchasing long term care insurance or saving even more for retirement.

But there are so many things we can’t plan for; my mother was banking on ten more years of working (and saving) prior to retiring, and likely hoping for decades more before she battled the type of illness she is currently facing. Alzheimer’s does not run in our family. We were truly blindsided by her diagnosis. While our family’s story might be an outlier, it felt random and unexpected and unlucky to us, which should serve as a reminder that this could happen to anyone.

Overall, I think we’re all unaware of (or simply avoiding) the impact of what will happen in our nation during the next 5-10 years if we cut Medicaid, fail to develop a mechanism to help aging seniors build up more savings, and do nothing to curb costs.

Lastly – I went back and forth on whether or not to share this. Speaking bluntly about the reality that Mom may have to end up on Medicaid sheds some light on Mom’s personal financial status. I asked some folks about their initial reaction to the post, and I realized it may make some uncomfortable to know my Mom might have to be on Medicaid. But the more I talked through it, the more I realized I think a lot of that impulse reaction comes out of a narrative which equates dependence on Medicaid with a lack of responsibility – not just for my ailing mother, but for children, seniors, single moms, young adults, the mentally disabled (which affects another person in my household; a whole other post in it’s own right). And on and on I could go.

Honestly, I’m saddened and angry that this narrative is so pervasive. 2/3 of seniors currently living in nursing homes depend on Medicaid to help cover costs. More generally, 1 in 5 Americans depend on Medicaid for healthcare coverage. Talk to me separately about a policy that builds out more options for 20% of Americans, that addresses the rising costs of healthcare, and that acknowledges the humanity of those depending on this critical social welfare program as their lifeline* (*NOT metaphorical). But don’t underestimate my intelligence and inability to read between the lines of the current legislation – what the Republicans are peddling is a policy change that will provide huge tax breaks to the wealthy, result in deep cuts to the social safety net, and change the landscape of what services are provided under most plans.  And all of this is spun under the auspice of ‘curbing costs and premiums.’

We can restructure our healthcare system without heaping the costs onto the backs of our weary seniors and vulnerable children. We can, and must do better. Let’s be aware of the full implications of this policy, including what it could mean about the quality of end-of-life care for my Mom, and for yours.

I’ll be calling my representatives and protesting and raising hell, and I hope you’ll do likewise. A post by a friend ringing in my ears tonight 'On my weekly visit to my mom I wonder - has anyone who supports this bill ever visited a nursing home? ...Surely they must've had some middle class family member who despite working their whole life, needed Medicaid to survive?'

And this led me to think about our situation, and I just wanted to share how personally the implications of this bill could hit our family -- and yours.

Most folks my age (and even many folks in my parent's generation, I'd imagine) haven't sat down and mapped out a road map/the costs of protracted, intensive care costs in a nursing home. Charlie and I have begun researching costs, and average nursing homes that provide full services for Alzheimer's/dementia care range from $8,000-$10,000 -- A MONTH. My mom has worked hard as an educator al her life, was relatively frugal, diligent about saving, and has a great pension. However, it's still likely that we'll run her accounts dry with the rate of these costs if she has to live in a nursing home for years, as many folks do. And the more geriatric care books/advice sites that I read (and personal stories that I hear), the more I'm realizing this is the norm. Once personal savings and funds are dry - Medicaid kicks in. (*Worth noting this only applies if you live in a nursing home where Medicaid is accepted, and often waitlists for these homes are 2-3 years.)

As a sidenote -- these costs are inane/unsustainable and it's a huge burden/impact on the funding horizon for Medicaid. I'm not saying this doesn't need to be addressed or that Medicaid should serve as a 'blank check' type of social service. Reform is definitely needed. BUT, the reality with the proposed changes in the current bill is that they will have a hugely detrimental impact on the quality of care (and costs of care) for seniors and will provide no reform needed to curb these costs or increase overall funding to this critical social safety net.

I don't think this is something most folks my age are thinking about - but by the time it triggers, it will be of huge importance to our generation as more of us step in to care for ailing parents.

Just wanted to share. I'll be protesting and calling and marching, but I also wanted to speak out and talk about the implications for the bill on my family in my own little corner of the internet.

A post by a friend ringing in my ears tonight 'On my weekly visit to my mom I wonder - has anyone who supports this bill ever visited a nursing home? ...Surely they must've had some middle class family member who despite working their whole life, needed Medicaid to survive?'

And this led me to think about our situation, and I just wanted to share how personally the implications of this bill could hit our family -- and yours.

Most folks my age (and even many folks in my parent's generation, I'd imagine) haven't sat down and mapped out a road map/the costs of protracted, intensive care costs in a nursing home. Charlie and I have begun researching costs, and average nursing homes that provide full services for Alzheimer's/dementia care range from $8,000-$10,000 -- A MONTH. My mom has worked hard as an educator al her life, was relatively frugal, diligent about saving, and has a great pension. However, it's still likely that we'll run her accounts dry with the rate of these costs if she has to live in a nursing home for years, as many folks do. And the more geriatric care books/advice sites that I read (and personal stories that I hear), the more I'm realizing this is the norm. Once personal savings and funds are dry - Medicaid kicks in. (*Worth noting this only applies if you live in a nursing home where Medicaid is accepted, and often waitlists for these homes are 2-3 years.)

As a sidenote -- these costs are inane/unsustainable and it's a huge burden/impact on the funding horizon for Medicaid. I'm not saying this doesn't need to be addressed or that Medicaid should serve as a 'blank check' type of social service. Reform is definitely needed. BUT, the reality with the proposed changes in the current bill is that they will have a hugely detrimental impact on the quality of care (and costs of care) for seniors and will provide no reform needed to curb these costs or increase overall funding to this critical social safety net.

I don't think this is something most folks my age are thinking about - but by the time it triggers, it will be of huge importance to our generation as more of us step in to care for ailing parents.

Just wanted to share. I'll be protesting and calling and marching, but I also wanted to speak out and talk about the implications for the bill on my family in my own little corner of the internet.

Are you not alarmed?

I was away from home on election eve, and found myself in a hotel room with my 5-month old son asleep in his pack and play as I shifted quickly between texting friends, flipping on the news, curling under the covers, and then revisiting the text stream again. Around 11pm on Tuesday, November 8th I realized today was coming. My stomach dropped and I felt immediate shock when I finally acknowledged that Trump was going to be our President. And when I began re-mapping and reworking all of my expectations - trying to think what will he do first? -- tears came quickly because I knew he could do this, take swift executive action and close our doors to the vulnerable. I knew he would bank on lying and fear to turn our country's back on the tired, the weary, the hungry, the refugee. I texted my friends as much "%$^* guys -- imagine what this means... he'll shut down the resettlement of Syrian refugees..."

Knowing this was coming makes it no less painful or shameful.

Friends, let me continue to plea and remind you -- Donald Trump, and any other Republican or Democratic Congressperson who tells you refugees are not vetted and screened is lying to you.

I've worked in the refugee resettlement field. I've watched my coworkers attend the allocation meetings, process flights, coordinate with local offices to prepare for arrivals. I've visited World Relief offices all over the country and spoken with staff, who work alongside local churches to furnish apartments, arrive at the airport, welcome these families. We all know, from our experience - firsthand accounts from refugees, and our coordination with the US government, that refugees are thoroughly vetted and spend 12-30 months undergoing screening and clearance checks.

I've also personally met families, from Iraq, Somalia, and the DRC. I've heard stories of life in refugee camp. (I took one family to the grocery store for the first time as a volunteer; the parents of the family had been in a refugee camp for seventeen years prior to their arrival.) A family I volunteered with from Iraq had assisted the US government in their home country, which put their own livelihoods at risk prior to being resettled. I've driven a bright-eyed, kind, fifteen-year-old girl from Myanmar to doctor's appointments because she had a serious medical illness and needed care that was only available here in the US. Each refugee has a powerful story, of waiting to come, of great opportunity and gratitude in their arrival.

What Donald Trump is about to do, with the flick of a pen, will have an impact on thousands of lives, of families that have been waiting in desperation for a new hope. His entire justification for his action is built on lies and fear.

I went back this morning and revisited the visceral, emotional reactions I felt on election night to try and re-focus my own attention on what is in front of us. I've known this was coming, but I haven't made enough calls to my representative, haven't sent enough letters, haven't protested enough, haven't engaged in potentially uncomfortable conversations to make my case to others who may think differently.

I beg of you to do likewise. Take yourself back to wherever you were on September 3, 2015. Remind yourself of what and how you felt when you saw the pictures of Aylan Kurdi wash up on the shores of Turkey. Know that our government will now be shutting our doors to his friends, sisters, brothers, and countrymen, who are no less desperate for a safe haven. Know that Donald Trump is lying to you when he says that accepting refugees is a threat to our national security.

We should all be alarmed.

We should all be ashamed.

We should all take immediate action to raise our voices against what will happen today.

Why I March

My bag is (nearly) packed; a last addition are these trusty gortex hiking boots. As I load up my Mom's Rav4 and plan to descend upon DC with the masses this week, I wanted to take a few minutes to reflect on why I'm marching tomorrow.

1. I'm marching for refugees. I know the March is focused on women and women's right, but I'm grateful that the organizers have clarified a message of focus specifically on how Gender Justice=Racial Justice=Economic Justice.

I believe that refugees and immigrants are specifically and particularly threatened under this new administration, and part of why I'm marching is to re-assert the rights for refugees and our nation's commitment and long tradition of creating a safe haven for refugee women and their children. (More on that here.)

2. I'm marching for Paid Family Leave -- not just for women and men to have paternity leave, but for caregivers (the bulk of whom are women), who have to drop out of the workforce to care for an ailing parent, a brother with mental illness, or a sick child. I realize this specific nuance to this policy is so far off the legislative  agenda that it will never come up under this administration, but the need to build protections for caregivers is directly personal to my story. This need will only grow as more of the Baby Boom generation ages and many more of my peers are faced with life-altering changes around career decisions, financial implications, and personal commitments to caring for our family.

So I'm marching most vocally for paid family leave, and with that I will be marching for myself and for my Mom -- who taught me what it means to be a strong woman, committed to a career that has meaning, committed to working for change while also being the matriarch of her family.

There's been a lot of criticism and controversy around the March.

Should the March have a Big-Tent approach? 
Should it be focused on Reproductive Rights?
It needs to be for something and not just against Trump.
The March will result not result in lasting change.

{part of why I walk: my role as caregiver to these two!}

Amid all these cries, I've been grateful to watch the organizers continue to engage the struggle and seek to rebuild a coalition amid the fracturing of conversation. One of the things that became clarified for me during the election is that Trump's ability to create chaos causes a breakdown of our message to organize a response. So much of what many of us stand for is on the legislative chopping block. There's so much being undone that it really is hard to assert what we stand for. However, we can't allow ourselves to be stymied due simply to an ability to focus.

In the NPR Politics Podcast, Sam Sanders noted how marches and coordinated protests can shift the conversation. While that in and of itself may not result in direct, legislative change - it's definitely an important start. Many of us have found that we now need to live in a posture of protest and willingess to stand alongside the vulnerable at the outset of this administration. Voicing this to our new President is a clarified and important enough message that I am lacing up my boots and taking to the streets.

Mom has a hard time understanding the shifting forces in our politics, but when I explained to her
why I was marching she said she wanted to come. Even though it won't work out logistically, I'm lacing up these trusty hiking boots she bought me over ten years ago, and wearing small tokens to remind me of her strength. I'm marching to assert my voice as daughter to her, mother to Asher and Moss, and woman who won't sit quietly and let this new administration underestimate the power of a group of thoughtful, committed citizens.

Thoughts for Giving Tuesday: Refugees Welcome

When I saw the BBC headline yesterday that the Ohio State attacker was a refugee, my heart sunk. We’ve seen the anti-refugee backlash – after the Paris attacks, and after San Bernadino. As soon as I saw the headline about the attacker’s background, I felt frustrated in anticipation of the sentiments and story lines that will inevitably flood airwaves in the coming days and weeks. It breaks my heart but also makes me livid, because I know the lies and fear that undergird this anti-refugee rhetoric that will surely come.

Since it’s Giving Tuesday and the holiday season – I just wanted to take a few minutes to pound out this blog post and reiterate why it’s imperative that we don’t respond with fear and withdrawal in light of the revelations about the Ohio State attacker.

{source}

We’re going to hear politicians, including our President-elect, use the example of this attacker to promulgate anti-refugee sentiment and fear. But let’s remember that refugees are thoroughly vetted. They receive the greatest level of screening of any group that moves to the United States. Refugees undergo screening by the National Counterterrorism Center, FBI, Department of Defense, and the Department of State. They have interviews with the Department of Homeland Security and undergo subsequent biometric security checks. (More details on that process can be found here and here.)

Let’s remember that the US has resettled 3 million refugees since the passage of the Refugee Act in 1980. Aside from this isolated instance and the arrest of two Iraqis in Kentucky, no other refugee has been arrested or convicted on terrorist charges. (Source) As The Economist article states clearly, refugee resettlement is the least likely route for potential terrorists.

(The debating part of my subconscious would also like to make the oft-cited point here, that when our nation has experienced countless mass-shootings, generally at the hands of loner, white males, that zero action is taken to target this demographic. Calls are made to ‘shore up mental health services’ and/or improve gun control measures, but we don’t decry this demographic or slight low-and-middle income white men.)

{source}

Let’s remember that the US refugee resettlement program focuses on helping the most vulnerable. We bring in widows and orphans. Refugees with medical needs  that can’t be treated elsewhere have their cases prioritized. Our resettlement program focuses on family reunification. Resttlement of Afghani and Iraqi families gives priority to those who aided the US government (and includes many who would have been targeted were they not resettled). Resettlement services have strong acculturation and work-based components. Having worked in the field, I firmly believe the program is rooted in all the best parts of our American identity.

Additionally, as a Christian I want to remind those who ascribe to Christianity that this season is all about a couple, who was forced to flee their home and take refuge in a foreign land in order to protect their newborn son. Please don’t miss that stark contrast you make if you give into fear and support voices to close the door on the vulnerable during this holiday season.

Beyond a Christian moral imperative, let’s not ignore the humanity of refugees around the globe. I shouldn’t have to plead to my Christian brothers and sisters to continue welcoming Somali, Syrian, and countless other refugees out of a Christian moral imperative. I hope you will think of what you would want to have done for your son or daughter, mother or father, sibling, closest friend, if the roles were reversed.

I understand the counterpoint -- the impulse to want to protect your children and country. However, I

think that impulse is stoked by politicians who are selling a false narrative (lack of security in the process) for political gain. We don't have to (and are not) diminshing our security in exchange for opening our doors to the most vulnerable.

I firmly believe in the safety security, and vetting process woven through every facet of the US refugee resettlement process. Refugees pose no greater threat to our nation than do other, fellow citizens. (See the facts/figures above and here.)

Don’t let politicians deceive you with spurious threats of ISIS lying in wait, cloaked as refugees trying to sneak their way into our country via a weakly guarded resettlement process here in the US. This is unfounded and untrue.

I implore that on this Giving Tuesday, please consider supporting refugee resettlement agencies. Or at minimum, please don’t give in to the anti-refugee rhetoric that will be circulating in the upcoming days, weeks, and months. Speak out, and speak LOUDLY.

{source}

Donation options:

Kentucky Refugee Ministries

UNHCR

World Relief

IRC

Save the Children

Why We Walk: The Recap

Walk details:
The walk is on Saturday, August 27th. Our group will meet in front of the fountain outside the Fayette County District Court 9:15 and 9:30. A small ceremony will be held at 9:45 and then we will walk at 10. The walk is approximately two miles long, with a shorter mile loop for those who need it. See below for parking details from the Alzheimer's Association.
Our team will have North Lime donuts downtown to celebrate together after the walk. All are welcome!

Why we walk:
1. We walk to speak out.
2. We walk to support clinical trials and research.
3. We walk to support caregivers.
4. We walk to honor and value the sick and elderly in our community.

It's almost walk day and we are getting excited! Thanks so much to everyone for their love and support -- when I head downtown on Saturday I won't just be joining friends and family from nearby, but folks driving in from Louisville and Chicago. I'll be wearing the sweatbands that friends mailed us four years ago to let us know they're with us. I'll be thinking of an email my friend Brian sent when I emailed out about a previous year's walk, telling me he was keeping us in his thoughts as he studied to become a doctor, learning about the pathology and existing treatment options for Alzheimer's patients. I'll be thinking of friends who over the past years have driven far for other big (and small!) events - painting bedrooms, baby showers, even just coming up to grab a drink and keep us company. I'll be thinking of friends from elementary, middle, and high school who, though I haven't spoken to them in years, came out to walk in previous years or made donations this year to show our family love and support.

Thanks for giving us a space to share about Alzheimer's over the past month. The disease can be isolating and lonely -- you've allowed us to shine a light on different aspects of the walk, and the entire process has been incredibly encouraging for us. We are grateful for you and we'll be carrying all of your kind words and good vibes with us on walk day!

xo,
Ellie

(Click here to access our walk page, where you can register, donate, or leave a word of encouragement for our team.) 

Parking 
The following parking options are available to Walk to End Alzheimer’s participants: 
-Chase Tower Garage, 201 East Main Street Free parking 
-Hilton Hotel Garage, 369 West Vine Street - Free parking if you tell cashier you're with the walk when you exit 
-Courthouse Garage, 105 Barr Street - $1.50 if you pick up a discount voucher at our parking tent.

Why we walk, Week 4: Because getting older is not a bad thing

Do you ever find yourself bemoaning how old you feel?

I do it all the time, and I’m only thirty. It’s ridiculous on two levels – on the one hand, I’m still young – likely more than half of my life is ahead of me. But the second and more important absurdity is that my underlying tone is negative; my statement is a couched slight toward the elderly.

Earlier this week I listened to the podcast ‘On Being’ andheard Krista Tippett speak with Xavier Le Pichon, a renown geophysicist and humanitarian. He spoke candidly about his experience caring for his mother who suffered from Alzheimer’s, and in that same segment mentioned the “all people are part of humanity…humanity is not complete if you have some parts out". (See below for the full quote.)

This week I’ve been reflecting on how Alzheimer’s disproportionately affects people who are older, in their last season of life. I’ve spoken often about how this isn’t just a fated illness that happens to our elderly, or a normal trajectory of aging for many. And yet, as I speak about Alzheimer’s I feel that this point needs to be reiterated, time and again.

Part of the challenge is that individuals with Alzheimer’s literally fade away in language and personality. It is easy, and almost default, to brush them aside as their memories fade – to shift to loving them in a paternalistic and patronizing way. (I so often hear in Alzheimer’s support groups “well they’ve just become so sweet and like a child.” Even the other day on Facebook I saw someone comparing a frustrated Alzheimer’s patient to the behavior of an angsty teen.) Our tendency to push individuals aside is not just because of their illness, but also because our culture views aging as something negative – something to avoid and dread.

As I write this it’s important to acknowledge and confess here that I am not just pointing at “society”. For those who have watched our Alzheimer’s walk videos, you’ve likely noticed how I sometimes speak to Mom as though she is younger or a child -- coaching her through the videos and helping her string together broken thoughts.

On my best days I am slowing down, helping her connect pieces, building up who she is and fighting for her to find her words and find herself. But on my worst ones I am chiding her, rushing her – impatient and eager to get out the door. I’m angry that she isn’t more capable, frustrated that she’s holding me back. I am just as prone to diminish and treat her in a childlike manner, and thus find that I have to constantly fight against the natural impulse to ignore and minimize my mother’s value as an older and sicker person.

While I’m continually grappling with my innate impulse to think of aging as a negative, Alzheimer’s also forces me to consider aging in stark contrast to the dread often associated with growing older. I am perpetually reminded in small ways of the richness and beauty of old age that has been stolen from my mother.

She and I have been robbed of the sacred season when parent and child have the potential to become good friends.

She can’t hope to watch her grandchildren grow or find fulfillment in imparting wisdom to them as they navigate their transition to adolescence and adulthood. 

I’ve tried to cram in a few bucket-list trips with her – to Greece and Spain and Maine. But I know that if my mother had a normal retirement, that she and I might have had years worth of annual road trips ahead of us. I often day-dream of the national parks tour-that-might-have-been  – camping under the stars, scaling mountains, and descending into valleys bursting with wildflowers.

So while I mourn the reality of our situation and the fact that Mom’s golden years have been shortened, I concurrently seek to fight back against the impulse to dismiss the elderly, the vulnerable. 

I try by seeking to counter this in the everyday moments.

Before I snap at Mom for asking me a question five times, I try remind myself of how scary it must be for her to lack a full grasp on time – yesterday and how it relates to tomorrow.

Before I get frustrated that I have to spend my only free hour of the day making my Mom’s monthly calendar or planning meals for such a big family, I try to remind myself of all the unexpected bursts of joy I get to catch each day; I get daily glimpses of Mom huddled in a tent with Asher in the living room or walking Moss until he dozes off to sleep.

Our family is attempting to remind ourselves that aspects of our life are sweeter and more abundant because we have such a mixed age group living under the same roof. And as we prepare for the walk, we are reminding ourselves and others that our society should exalt and honor individuals in every phase of life. We walk to remind ourselves that our aging mothers and fathers, grandmothers and grandfathers, are no less cherished or important than our children. This week, we walk to remind ourselves of the inherent value of each soul – even those who are seemingly fading away.

We walk to bolster the spirit of discouraged Alzheimer’s patients – to assure them that memories aren’t just housed within our own minds, but that they are flowing through our community – embedded within stories carried by the neurons and synapses of their children - stored deep within the souls, the glorious vessels of their grandchildren – vibrant and dancing in the laughter that emerges when longtime friends gather to reminisce. 

We walk to remind Alzheimer’s patients – young and old - that they are still with us and will remain with us long after their memories can no longer be recalled within their own minds. We walk for them on Saturday, and we will carry them with us through the next generation and beyond.

We hope you’ll join us.

(Click here to access our walk page, where you can register, donate, or leave a word of encouragement for our team.) 

Human people are not adults in full possession of their means. Human people — it starts with babies, it continues with growing people, it continues with adults, it continues with older people, and with great age, and people who die. All of that is part of humanity, and humanity is not complete if you have some of these parts out.

And the way to build the society is the way to integrate these people in a way in which they can interact and each of them can find out that they have their place, that their life has a meaning, that they are needed by the others. So often I have found, for example, among very old people that they have the impression that they are not useful anymore. Nobody needs them. And then they want to go. They want to go. So there is this problem that the society cannot live by itself if it doesn't recognize that it's heterogeneous and highly diverse.

Why We Walk, Week 3: To Support Caregivers

This week I want to write about the ups, but mostly the real challenges

of caregiving. I could get really rambly (and this post is by no-means short), so I've divided my thoughts into four key takeaways I'd share if I had to summarize -

1. Caregiving is complex.

One of the greatest daily challenges for Charlie and I surrounds naptime for our kiddos. Asher naps from 11am-1pm, a time of day that I’ve come to dread. I can boil the source of this angst down the basics – it is nearly impossible to keep Mom from going upstairs or clamoring around the house during this time frame. A simple ‘please be quiet for the next two hours’ doesn’t work because she forgets, or she remembers but gets hungry, anxious, etc.

I’ve gotten wise over the years. I now make her sandwich before Asher goes down for his nap so that I don’t have to worry about it mid-way through the nap. I know to try and find an activity to occupy her time during that span. But even with all of these preemptive steps – some days this doesn’t go right and Asher gets woken up, or I get angry at Mom for being loud and nearly waking him up. The base-level, all-consuming anger grows not only at the tangible repercussion of waking up a toddler from his nap, but also from a deeper resentment that this is something I have to mitigate for as a new mom. Feelings of -- 

Isn’t being a new parent challenging enough?

 or

deep jealousy of other women who get help from their Mom are constantly bubbling below the surface.

This particular challenge is unique to our scenario. Many Alzheimer’s caregivers aren’t among the sandwich generation (those of use caring for children and parents). However, with Alzheimer’s each individual’s trajectory of memory loss is different – so I’m sure each caregiver you speak with could describe a specific, very particular challenge that throws their quotidian activities for a loop.

2. Caregiving is isolating. 

Early on I read the book A Bittersweet Season: Caring for our Aging Parents and Ourselves by Jane Gross, and I remember her highlighting the Catch-22 of how ‘no one in your social circle really wants to talk about the day to day things you’re doing because they are mundane and depressing, but on the other hand it is your entire world and you don’t have much else to talk about’ (paraphrasing here, couldn’t find the exact quote).

While the language is strong, I’ve found this to be mostly true. All of my friends ask and genuinely care, but it’s difficult to listen to someone share for an extended period of time about a helpless situation. It’s hard to sit with someone and hear about a painful experience and not know what to say. And, on my end, it’s hard to be vulnerable and speak openly about this during casual hangout times. The combination lends to often feeling like there isn’t a good, carved-out space to talk about the challenges – but that also often leaves me feeling totally void of anything to contribute when out with my other twenty-and-thirty-something friends, as caregiving (and now, parenting) has come to feel all-consuming.

3. Caregiving is un-sexy. 

I always think back to my favorite part of David Foster Wallace’s ‘This is Water’ when I use the term unsexy.

The really important kind of freedom involves attention and awareness and discipline, and being able truly to care about other people and to sacrifice for them over and over in myriad petty, unsexy ways every day. 

Alzheimer’s caregiving feels like the definition of the unsexy kind of love – the constant repetition, endless patience, and tiny-detail-esque management and guidance you provide is all-consuming and often unseen.

4. Caregiving is a calling that is central to maintaining healthy community.

I believe strongly in the centrality of community; I believe relationships and caring for one another are the most important thing we can contribute to throughout our lives. So, when Mom received her diagnosis I couldn’t see any other option than to move home. My career to date has been in the non-profit sector, and I can’t help but think that if we had less brokenness and abandonment of family and our immediate community, that there would be less need for the type of work that I do.

(Please know that I absolutely am not saying here that I think everyone is obligated or responsible to care for their immediate family member XYZ if they are sick, as relationships are complex and deep and there is so much involved.) But, what I do know is that I felt that I was in a position where I could help Mom and knew that it was the right thing to do. However, the decision to do the right thing meant embracing a significant shift for what I’d expected my late 20’s/early 30’s to look like.

Sometimes the hardest thing to do is the smaller, daily calling that is right in front of you. My community has been different but rich because of my role as caregiver. Overall, I’m grateful for how my experience as a caregiver has led me to deepen my dependence on my community and has forced me to embrace how to live in a more honest and authentic way.

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