Tag Archives: caregiving

Connect the Dots

. dementia, family .

My father asked his primary care physician yesterday,”Did I ever tell you how I came to Cooperstown?”

“I’d love to hear that story,” she said. She wheeled her stool a little closer and leaned it to listen.

“When I was in high school, I worked at a camp in Vermont,” he began. “I met Haile Selassie there. We drove down these winding roads” — and he drew large zig-zags in the air — “to get to the Red Sea. You know, I used to hitchhike a lot of places because you could do that then.”

Kamp Kill Kare, Vermont

Meeting Haile Selassie

Switchbacks

“Yes,” his doctor agreed, “things were different then. But you didn’t tell me how you got to Cooperstown. You were in Vermont.”

“Oh, right,” he said, and paused to think. “I was in Vermont. I worked at a boy’s, hmm…, I worked at an all-male camp. A man there named George Kempsel asked me what I was going to do with my life and I told him that I didn’t know. He told me, ‘You should go to Cooperstown!’ So I said, why not? And here I am.”

She smiled and thanked him for telling the story.

I wondered what she thought of it, but I didn’t have to wait long. When we left the exam room, she told my father to walk ahead of us so she could observe his walking. He complied and slowly toddled down the hallway with his walker.

“It’s interesting to see the dots,” she said.

“You know there were pieces from about five different stories there,” I said to her.

“Yes, I know,” she said, “and they aren’t connected, but he’s trying to connect them.”

I nodded. I asked her about a few things that were troubling me — his occasional difficulty swallowing, his struggle to dress himself appropriately, his general confusion.

“The thing you need to focus on is that he’s happy. He’s clearly very happy,” she said.

And that’s true.

The very first question she asked him — how are you doing? — elicited this answer. “I love where I live. I’m very happy there. And these fine people” (he gestured toward me) “take such good care of me. I have no complaints.”

But I kept thinking about the connect-the-dots that tell the story of a man. For my father, those dots have taken on a life all their own and are moving around in his landscape.

Realism moving to surrealism.

Maybe I can learn to appreciate the surreal.

A Privilege

. family . , ,

Yesterday I ran into someone at the pool that I hadn’t seen in years — Bridget‘s father.

Bridget was on the first team that I coached and I still think back on her fondly. In fact, I had just been telling Laurel about Bridget the other day.

Bridget held all her team records with open hands. When Helen was quite young, Bridget told her to go break all those records. It was such a gift, so encouraging. Helen went on to break quite a few of them.

Anyway, Bridget’s father, Mike, asked about my father. I told him that I was staying with my father to take care of him.

“It’s such a privilege, don’t you think?” he asked.

I nodded in agreement.

Those were words I needed to hear.

Sometimes caregiving doesn’t feel like a privilege. It feels more like a chore. When I was home with small children, there were days when I would  look out the window and long for the freedom to go do something, anything besides laundry and cooking and changing diapers and wiping noses.

I used to bring my kids to the gym for a playtime we called “Kiddie-gym.”  The pre-schoolers would climb around on the mats and throw balls and scoot on scooters. The moms would sit and talk.

One day one of the moms talked about trying to find childcare for her twin two-year-olds so she could go back to college for a graduate degree. The mom next to me leaned close and whispered, “After all she went through to have those children, she’s abdicating her responsibility.”

It’s true that the woman with the twins had used in vitro fertilization. It’s true her husband had a good job so she didn’t need to work. But abdication? It seemed like a strong term to describe a mother furthering her education. Abdication was what a king did when he gave up his throne.

My take-away from that conversation, though, was that motherhood was on par with royalty. It was an honor and a privilege to be a mom. On my looking-out-the-window days, longing for something else, I would remind myself of that. I would lean in and embrace the wearisome work because not everyone has that privilege.

This morning a woman complained to me about the child-care hours at the gym.

“They don’t open until like 8:15 AM and they aren’t even open every day,” she said. “What if someone wants to work out before they go to work?”

“Maybe their spouse or significant other can watch the children,” I suggested.

“That discriminates against single moms,” she replied.

“Being a parent involves a lot of sacrifice,” I said, but I could see that she didn’t appreciate my answer.

I was glad for my conversation the previous day about care-giving being a privilege. It reminded me to stop thinking about the things I can’t do, but to appreciate the things that I can.

I can find the Jumble in the newspaper.

I can change the channel to Jeopardy.

I can fix over-easy eggs.

I can help with crossword puzzle clues.

I can drive him to the doctor or to get a haircut.

I can rescue photographs from the garbage.

I can remind him of people’s names.

I can tell him at 3 AM that it’s time to go back to sleep.

I can keep him in the home where he has lived for over 50 years.

Yes, it’s a privilege.

 

Patience

. Faith, family . , ,

“Quite frankly, God,” I said, “I’m getting a little tired of working on this patience thing. Could we move on to something else?”

Yesterday morning, I had been awakened by my father’s whistling. It’s happy whistling — “O Danny Boy” — evidence of his penchant for Irish music, that tells me he’s up and getting ready for the day.

Most days I listen for it. “Time to get to work,” I say to my girls as I get off the couch and head for the kitchen to fix his breakfast.

But yesterday, I heard it on the monitor in my room. It woke me up.

“O Danny Boy, the pipes, the pipes are calling…”

Sometimes he sings it. His singing reminds me of Lee Marvin in “Paint Your Wagon.”

I rolled over and looked at the time. 2:45 AM. Ugh.

When I went down to his room, he was laying out his clothes.

“What are you doing, Dad?” I asked.

“Well, I don’t know,” he said, turning to look at me.

“It’s not even 3 o’clock in the morning,” I told him.

“I know that,” he said — but I don’t think he did.

“Don’t you think you should be sleeping?” I asked.

“That sounds like a good idea,” he replied.

After helping him get back to bed, I went upstairs to my own. Laying there, looking at the ceiling, listening to the monitor, I could hear him rustling around for a few minutes, then quiet, then the heavy breathing of sleep.

I wished I could do that, but sleep never returned for me.

Some time after 4, I came downstairs again and made my coffee. My ever-growing pile of books that I’m working through beckoned me. In addition to daily Bible reading and time with Lancelot Andrewes,  my current morning reading consists of

  • Charles Williams’ The New Christian Year — a devotion a day.
  • Pascal’s Pensées — a pensée or two a day
  • Documents of the Christian Church (selected and edited by Henry Bettenson) — a document a day
  • Walter Brueggemann’s Sabbath as Resistance — a section a day
  • St. Francis de Sales’ Introduction to the Devout Life — a chapter a day

St. Francis irked me yesterday. He said,

Among the virtues we should prefer that which is most conformable to our duty, and not that which is most conformable to our inclination…

My inclination is not towards patience. Mercy, maybe, but not patience. I’d like to swoop in, do some little nice thing for someone who’s hurting, and leave.

This long haul of caregiving is the opposite.

And my patience is in short supply these days.

“Lord, can we move on?” I prayed — but I knew the answer.

I began a good work in you. I’m going to complete it, He replied.

So, when I heard “O Danny Boy” for the second time that morning, I made his breakfast, took his blood pressure, gave him his meds, found the puzzles in the newspaper for him, and tackled another day.

Mentor

. family . , , ,

A Facebook friend has been asking a “Question of the Day.” Yesterday, he asked this:

Who is your “I’ve never met you and likely never will” mentor?

I realize more and more how much of a mentor my mother was for me. She was, above all the other things, a caregiver. Obviously I’ve met her, though. I just didn’t appreciate her enough in that role.

The thing is — a caregiver’s mentor is never going to be in any spotlight.

She’s going to be home, quietly doing mundane tasks.

She’ll find her strength and solace in an abiding relationship with God.

She’ll be able to count on one hand her closest friends, but will still have a wider circle of loved ones, people she cares deeply about and who care deeply about her.

However, most people won’t even be aware of half of what she does.

*****

The other day, at Cooperstown’s Antiquarian Book Fair, I found a treasure that comes close to finding my mentor.

I found a Book of Common Prayer with a name imprinted on the front: Rachel Ware Fuller.

Inside, the inscription told me that the book had been a gift from her son.

And then, there were pages and pages of handwritten notes.

I thought I had found the treasure I’ve been searching — a mother’s spiritual summation, all the things she has learned through parenting and wifing and friending and living. This would have been the mentor I never met and never will.

However, further inspection showed the notes to be from a Samuel Clark Harbinson, an Episcopal rector at a New England church. I’m not sure how the book was transferred from Rachel Fuller to him, but it was. Another inscription revealed that.

His notes are fascinating. And challenging. And thought-provoking.

Someday though, I hope to find a well-worn book with the margins and flyleaves full of notes written by a caregiver. I want it to have a coffee spill on a page or two, and ink smeared by tears on many pages.

And notes. Lots of notes.

I’ve already started accumulating a collection of other people’s journals and some religious books with notes in the margins.

But I’ll keep looking, at book sales, and in book boxes, for this Holy Grail of books.

That’s where I’ll find my mentor.

Caregiver’s Serenity Prayer

. Faith, family . , , ,

God, grant me the serenity to accept the things I cannot do,

I can’t “fix” my loved one.

I can’t make him think more clearly.

I can’t make him understand.

I can’t go back in time, and mustn’t languish over how or what he was, because he is who he is now and that’s where we are.

Courage to do the things I can,

I can handle business affairs — writing checks, paying bills, scheduling appointments.

I can do laundry.

I can prepare meals and serve snacks.

I can answer the phone.

I can chauffeur.

I can explain things over and over and over and over, and set my exasperation aside.

And the wisdom to know the difference.

When I lay in bed at night, let me not angst over the battle, but, in the weariness of a hard-fought day, take my rest knowing that I did the best I could.

Few will see or know what I do.

My own loved one will never fully grasp the sacrifice that I, and my husband, and my children, are all making on his behalf.

But it is right and good.

And You know, o Lord.

Let that be enough.

Adapted from The Serenity Prayer by Reinhold Niebuhr.

Taking Care of Me

. family . , , , ,

In the selfishness of my heart, I could picture it — somebody taking care of me.

Fixing all my meals.

Bringing me the foods I like.

Tending to my needs.

Like a cruise ship — without the cruise or all the people.

Being a mom and a caregiver is exhausting at times.

I suppose it doesn’t seem like anything too difficult. How hard is it to fix tomato soup and a grilled cheese sandwich every day?

Or to do laundry.

Or take out the garbage.

The monotony of it could tend towards boredom. Kathleen Norris, in her must-read book Acedia & Me, said,

Might we consider boredom as not only necessary for our life but also as one of its greatest blessings? A gift, pure and simple, a precious chance to be alone with our thoughts and alone with God?

She reminded me of why I am so suited for this job.

While washing the dishes, most of the time I am quite alone with my thoughts and with God. I am running through the scripture I’m memorizing or praying for family and friends. When a family member joins me to dry the dishes, it is a special delight.

The truth is — a cruise has never appealed to me. All that basking in the sun and eating rich foods and drinking fancy drinks.

Okay, the sun part sounds good.

But the lush extravagance doesn’t.

I’d rather be repotting plants.

Or weeding the myrtle.

Or taking out the garbage.

img_1154Yes, I find satisfaction in dragging the big garbage can to the end of the driveway for the garbage man to pick up. Today, I’ll clear a swathe of snow as I do it and walk back to the house in the path cleared by the can. Later, I’ll carry the much lighter can back to the house and put a fresh clean bag in it for the new week.

The other day though, in the grumblings of my heart, I wished someone would take care of me. In a flash I saw it — lying in a bed in a nursing home, having to be turned to prevent bed-sores, having someone spoon the food into my mouth all the while talking with a co-worker about the weekend past or the weekend ahead, having someone choose what I was to wear and dressing me in it.

I shuddered.

Nope.

I take it all back. I don’t want someone to take care of me.

I’m fine, thank you.

And so very thankful to be able-bodied and independent.

If You Say So

. dementia, Faith, family . , , ,

The following is an edited version of a post first published on January 2, 2012. I wrote it when my mother was still living at home and I was trying to help my father with her.

My sister and I can carry on conversations using just things my mother says.

For instance, my mother often says, “If you say so.”

Making the sandwich #1This is usually in response to something she doesn’t believe to be true.  Like, she’ll be preparing a meal for, say, 150 people.  (150 is her favorite number.)  I’ll say to her, “Mom, there are only going to be five of us for lunch today — You, me, Dad, Mary and Laurel.”

She’ll look at me with a look that says, I don’t believe a word of that.  But out of her mouth will come the words, “If you say so.”

It’s a phony acquiescence.  She’ll continue right on making 150 sandwiches.

Or, she’ll be getting ready for church, and I’ll say, “Mom, today is Tuesday.  There’s nothing going on at the church today.”

She’ll answer, “If you say so,” and then continue getting ready for church.

She started saying it as a cover for her memory loss.  It was easier than arguing.

The reason I wanted to start off the new year with those words, though, is because they tie in so beautifully with something else I’ve been thinking about.  I’ve been thinking about how the earthly life of Christ was book-ended with two statements of yielding.

First, when the angel told Mary she was going to have a baby, she responded with,

Behold, I am the servant of the Lord; let it be to me according to your word.

Luke 1:38

I’m quite sure there must be a translation out there that translates her words as, “If you say so,” not in an I-really-don’t-believe-a-word-of-it way, but in the way I would like to be able to say them to God. A yielding.

When Jesus was praying in Gethsemane before his death, he said these words,

Father, if You are willing, remove this cup from me.  Nevertheless, not my will, but Yours, be done.

Luke 22:42

Can’t you just hear the “if you say so” in there?

“Father, take this cup away from me, but, if you say so, I’ll do it.”

When God asks me to go through something, I’d like to be able to say, “Okay, God, if You say so.”

I want 2012 (and now 2017) to be an “If You Say So” kind of year, a year of yielding to the Father’s will.  I want to be like Mary and Jesus,  who, facing trials and uncertainty, still trust God’s overarching plan.

However, I want to be sincere in my words — not like my mother  just saying words to smooth things over.

If you say so.…

Simple words from a person with Alzheimer’s.

Words also to live by.