Learning to ask for help

Our "awkward, brave & kind" email and the response we received

Dear friends—

I struggled writing last week’s Sandwich Season post and ended up sending nothing at all.

It was a challenging subject: asking for help.

This topic comes up so often in my conversations with people experiencing a Sandwich Season or other challenging times—a death, an illness, the loss of a marriage or a job, a child pushing boundaries or fill in the blank with your own current challenge. These are difficult experiences, even more so if you try to go through them alone.

Of course professionals can help. With enough googling and networking, we can find the therapists, gerontologists, personal care attendants, funeral directors, attorneys and job coaches we need.

But professionals cannot solve every problem. During a crisis, there’s a lot of everyday life to manage. Kids still need to be picked up from school, kitchens need to be swept, and people need to eat. What do you do when the caregiver needs a break?

What follows is a piece of my family’s journey, including a way we asked for—and received—help during one of our hardest times.

All my best wishes to you and yours,

Sarah

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Dad and Mom, May 10, 2023

Caring for Mom

By fall/winter of 2022-23, Mom’s dementia had gotten to the point where Dad was spending a considerable amount of effort caring for her, in addition to doing or overseeing housework, meal-planning and home maintenance. It was a lot.

I was relieved last March when they moved into a retirement community.

Had Mom moved in alone, she would have been in the memory care area. But because Dad moved with her, they were able to set up an apartment in the assisted living wing. There, Dad cared for Mom with help from the nurses—and without having to shop for groceries, cook meals and care for a house.

Mom was getting weaker by the day, and in April she was hospitalized. We learned she had a serious bone infection. After several conversations with her medical team, Mom opted for comfort care rather than working toward a cure, which we were told would be difficult and unlikely. She entered hospice care.

At first, my mom’s hospice nurse visited once a week to check her vitals and see what supplies she needed. The hospice bather also came a couple of times a week to shower her, and wash and style her hair. The chaplain came now and then, and the social worker stopped by. As Mom’s needs increased, the nurse came more often, until she was there nearly every day for up to an hour.

I had always assumed hospice meant that someone would be there most of the time. But what I learned was that even with hospice care in place, Dad was still largely on his own caring for Mom, unless he called for nursing assistance.

Mom continued to grow weaker, unable to make the walk to the bathroom without assistance. But because of her dementia, she would forget how little strength she had. She would forget she was supposed to call for help. Sometimes she would get out of bed in the night while Dad was sleeping. Sometimes she would get out of bed when Dad was in the next room. Sometimes she would get out of bed and make it to the bathroom but would need help on the return trip. Sometimes she fell.

We knew her time was short, and our greatest fear was that she would fall and break a bone, and spend her final days in pain. So unless someone else was present, Dad needed not only to stay close by but to keep his eyes on her at all times.

I helped as much as I could, spending time with them most days, but I also was caring for my own family and working to clear out their house, where they had spent thirty-two years. I ping-ponged like this for months, bouncing from my house to theirs to their apartment and back.

When I came down with covid, I continued to visit them most days, because Mom appeared to be nearing her end. The nurses left protective gear for me at a back door, where I would don a mask, gown and gloves, and slip into the apartment to spend precious time with her and give Dad a little break.

Wearing PPE with Mom, July 23, 2023

Finding care for the caregiver

Meanwhile, the nurses and other staff had started taking me aside. “Your dad looks exhausted.” “Your dad needs more help.” “I’m worried about your dad.”

When I asked him how he was doing, he kept saying he was OK and that he would let me know if caring for Mom was getting to be too much. He assured me that it was an honor to care for her. Even yesterday, when I showed him this post, Dad said, “I wasn’t aware that I was exhausted.”  

But I could see it taking hold of him. He was getting more and more stooped, and he seemed increasingly fatigued and fuzzy.

We discussed bringing in additional nursing care from an agency, but the fact was, Mom didn’t need more care than she was receiving. All she did was sleep or chat. Mostly she just needed someone to be present to keep her safe.

The truth was, the person who needed more care was my dad. He needed a break.

What would that look like?

I prescribed “company”: people who would sit and visit with my mom. People who could call a nurse if she needed something. People who would sit with my dad and be present for him as he watched my mom grow ever weaker, ever smaller. People who would sit in the apartment while my mom slept, so Dad could take a walk around the building or drive over to the nearby grocery store.

Mom sharing memories of the birds she kept as a child—assisted by a porcelain budgie I found in a Red Rose tea carton. July 25, 2023

Asking for help

I talked with my brother, Matthew, and we put together a plan, which I semi-delegated to him (thanks, brother!). He set up a Google calendar with blocks in one-hour increments, and then we sent out an email to some of my parents’ local friends. We explained the situation and then did what I always find to be a ridiculously difficult thing to do: We asked for help.

And guess what? People answered. They said yes. They signed up for multiple shifts. They told other friends who asked if they could sign up too. Some friends did not sign up, and we completely understood that this was a hard request we were making. It was all OK!

And every day for the last week or so of my mom’s life, friends showed up. Mom and Dad spent time with people they enjoyed, Dad got a break from caregiving, I got a break from worrying, and we all felt a whole lot of love and support that I will carry with me forever. (Thank you, friends, from the bottom of my heart!)

My only regret is that we didn’t ask for help sooner.

The email we sent

Every situation is different, but I am going to share with you the email we sent out. One of the hardest things about going through a crisis is that it’s the time you need help the most, but it’s also the time when it might be hardest to figure out how to ask for it.

Plus we live in a society where we are encouraged to be independent and strong, so we can feel very vulnerable admitting we’re at the end of our abilities, energy and resources.

What I am learning is that asking for help can be life-changing—and community building. Reading a draft of this piece, members of my writing group reflected that sometimes people fear offering help, because they don’t want to intrude. And my dad suggested that requesting help can actually be helpful to those around us. Many people want to offer assistance, but they are not sure what to do.

A thought I’ve taken comfort in, both as a helper and as one needing help, is a phrase coined by social scientist and writer Brené Brown:

“Stay awkward, brave and kind.”

In the past year, when I’ve had to do difficult things, I’ve turned it into a mantra: “I am awkward, brave and kind. I am awkward, brave and kind.”

Because life is awkward! And it often is less important to do something right than to just be brave and kind, and do something.

So here it is, the awkward, brave and kind email we sent to some of my parents’ friends. You’ll see we broke down the situation into a “Concern,” a “Mission” and a proposed “Solution.” If it’s helpful to you, feel free to adopt any part of it.

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Dear friends,

Mom and Dad have been blessed to have developed such a supportive community over the years, and Sarah and I are heartened by your expressions of concern and offers of assistance. To that end, Sarah and I would like to propose a way to assist with what has become a pressing concern.

The Concern:

Dad has been a champion in Mom’s end-of-life care. But while he may wish he was tireless, he is not and is having difficulty keeping up with all the demands of caring for Mom and taking time for self-care. Dad is fatigued and needs more regular breaks from his many responsibilities, not the least of which is keeping watch over Mom. Although she is very weak, she has been getting out of bed when Dad isn’t looking, and has fallen several times and gotten lost at least once.

The Mission:

To give Dad respite and to keep Mom from hurting herself.

The Solution:

We are asking several of Mom and Dad's friends if you might be available to spend a few hours with them at their apartment. This could entail: 

•  visiting with both Mom and Dad

•  keeping Dad company as he sits with Mom while she sleeps (which is increasingly often)

•  sitting with Mom while Dad focuses on something else in the apartment (organizing, bills, etc.)

•  sitting with Mom while Dad goes for a walk, runs errands, or eats in the dining room (nurses are available, if help is needed)

I am creating a shared Google Schedule, so Dad can plan accordingly and Sarah can know the best times for her to be present. (Sarah visits most days but is also working on clearing out their house and preparing it for sale, in addition to overseeing her son’s care at home.)

Our plan is to divide days into one-hour slots between 9am and 1pm, and between 3pm and 6pm. If you might be able to take a one-, two- or three-hour section each week, Dad, Mom, Sarah and I would be eternally grateful. We certainly don’t need to fill every timeslot, but every hour will help.

It saddens us to say this, but this will not be a long-term commitment. Last week, Mom’s condition was such that the hospice nurse didn't think she would make it to the weekend. However, she bounced back, and we are delighted that she has been with us for another week of good visits. Her spirits are good, and she is full of gratitude for what has been, in her words, a “wonderful life.”

Please let us know if this is something you can help with, and/or if you have any questions or concerns. I will share the calendar later this weekend.

Thank you for your consideration and all best wishes,

Matthew, with Sarah

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Permission to grieve

I would like to introduce you to J.S. Park, a hospital chaplain who shares his experiences supporting grieving families and working through his own grief on Instagram. His book, As Long As You Need: Permission to Grieve, is scheduled for release in April.

Here is a bit of the typewriter art he features on Instagram. I love what he expresses here—the idea that simply our presence can be a tool for healing.

Thank you for being present with me and with my family—in person and online—during our time of loss and grieving.

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On a lighter note

Remember the porthole post from New Year’s Eve? I suspected it was built into a nearby fence for the benefit of a small dog, but in my mind it became a metaphor for our relationship with the future.

The other day, Leo the dog and I walked past the porthole again. Look (listen to) what we found ...

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Share your thoughts

When—and how—have you asked for or offered help? How have others helped you through a tough time? What suggestions do you have for helping and asking for help?