woulda shoulda coulda

I’m coming off a very sweet weekend in which Melissa and I marked 29 years of marriage (the large part of it as caregivers) and many kind people graced my retirement from church leadership.

It is one of those forks in the road where I guess I’m supposed to type memoir-like thoughts.  But I’m not.  The fork is not confusing and I don’t need to linger; I know where I’m heading next, at least in the short term.

I’ll be working at a local hospital in a specific kind of work, sterilizing medical implements.  It won’t be the kind of people-work that rides on one’s back all the way home and then sprawls all over one’s family and personal life.

I’m glad for it.  I applied for some other, more lucrative public service positions, but those didn’t come through – and in short hindsight I think that’s a blessing.  I couldn’t have given the emotional quality of work they needed.

The decades of family care giving simultaneous with the emotional demands of church leadership took a toll.  There were various highs and lows, but I’m not going back over them with a lot of “woulda shoulda coulda” self-absorption.  They were what they were.  I lifted a lot of people up and I let a lot of people down.  Such is human life.

20190528_080723Looking at myself honestly in the here and now, I can say that I have a good number of emotional punctures.  Not enough to incapacitate me or require major repair, but enough to know I need to keep things as simple as I can.  I’m like a garden hose with some nicks – sure, it’s not perfect, but it’s not time to throw it away.  It gets most of the water where it needs to flow.  A spot of duct tape and all’s well.

Care giving takes a toll.  I say that without shame.  It’s diminished me in some ways.

And I know it’s improved and enriched me as well.

If you are a caregiver in the trenches, you’re not crazy and, most of all, not a bad person (more than any other ) when you feel your nicks and leaks.   Care giving is costly.  As is anything ultimately worthwhile,

…through many tribulations we must enter the kingdom of God.  (Acts 14:22)

“To The Other Mother”

Greet Rufus, chosen in the Lord; also his mother, who has been a mother to me as well.  (Romans 16:13)

Joey 21 McNally

Mother’s Day is here  – let’s show some love for all the moms!  I want to honor Melissa, not only for giving birth to our two sons, but for the long term momming that went into raising a son with special needs to adulthood.  (re: the picture – no, he doesn’t drink.  It was just a milestone to celebrate his 21st birthday in a place that required him to reach 21.  Strictly a burger run).

I know from years of church experience that piling on the Mother’s Day sentiment can have unintended consequences.  Women who are not birth moms, or who can’t be, or who lost a child, or who are estranged from their kids might perceive a “second class female” label being slapped on them when church services set aside the Gospel and function more like a Hallmark holiday.

I don’t think that means we should eliminate Mothers Day but we should be aware of its limits.  Giving birth is not the only value to a woman’s existence and, frankly, there’s more to being a mom than giving birth and having a baby shower. We need to watch out for romanticizing and minimizing what should be serious, sacrificial and lifelong effort.  (Motherhood in this fullest sense is quite Christ-like).

The full expression of motherhood involves care giving.  I’ve watched Melissa’s role continually evolve as our boys age.  She’s always their care giver, even as they grow in adult independence.  She continues to be a source of “home” for them, even across distance.

I quoted Saint Paul at the top of these thoughts.  In an easy-to-skip ending to one of his letters, where he’s writing a lot of “Say ‘Hi’ to so-and-so” pleasantries, he mentions a fellow Christian named Rufus and then asks his readers to greet Rufus’ unnamed mother, who, Paul writes, has been a mother to me as well. 

What form this took we don’t know.  We know that Paul’s ministry kept him on the road; perhaps Rufus’ mom gave the Apostle a sense of home base and family when he visited Rome.  Paul mentions ailments in some of his letters; perhaps Rufus’ mom gave him respite and comfort.  And Paul’s life was full of hardships and hostile confrontations; perhaps the mothering he received from this unnamed woman was in simple hospitality, human warmth and affirming words when they crossed paths.  In a world that beat Paul physically and emotionally, this lady’s glad hug and smiling “Welcome back, stranger!” would have been the medicine of motherly love (I remember the days when our kids seemed to get better from bugs by just sitting on Melissa’s lap for a bit.)

In her book Teaching Diamonds in the Tough, Cleo Lampos includes a chapter entitled To The Other Mother.  She lauds those who step in to give care in ways that make them mothers to the world’s needy children of all ages,

DiamondsIn our family, my Aunt Lois served as our unofficial foster care system.  At one time or another, Aunt Lois took care of most of my cousins for varying lengths of time and for differing reasons.  Her frame house in mid-Iowa became a refuge for my sister and me for over a year as my mother battled with an alcoholic husband in another state.  Aunt Lois provided stability and protection at a time when my sister and I displayed emotional signs from abuse.  She infused us with hope because we had lost ours.  Aunt Lois became “our other mother.” 

To women like… Aunt Lois, a lot of adults owe debts of gratitude that can never be paid.  The “other mother” saved our lives.

So I take this Mother’s Day on the calendar to give thanks for all of the mothers on the job out there; those like Melissa who gave birth and continue to nurture those lives decades later,  and to all the “other mothers” who give care and bring forth new life when others have the blues…

 

 

Be a voice while waiting for a voice

APRIL IS AUTISM AWARENESS MONTH

A mother with considerable language skill shares about coming to terms with her daughter’s autism:  

As a speaker of English, Italian, French and Russian, the fact that my daughter did not have speech was a constant source of despair…Yes, I still find myself hoping that one day my daughter will speak to me and tell me all about what it’s like be autistic, but for now, I can wait.

The mom makes use of her local newspaper to share insight into autism and the needs of family caregivers.  Being a voice for those in our care and for caregivers can spread not only awareness but opportunities for support and compassion:

Without a support group, I had no guidance on how to deal with issues created by my daughter’s condition in public, so I did the best I could to be honest and take responsibility.

When a stranger would scold my daughter or shout at her for behaving inappropriately in public, I would say, “I’m sorry. My daughter has autism. We meant no offense.”

I didn’t know how people would react, and I was surprised by the response I got. Often the person would say, “I’m sorry. I didn’t know.”

But sometimes they would say, “I have three grandchildren with autism,” or “My niece and nephew have autism,”or “My best friend’s son has severe ADHA and is on the spectrum.”

On at least one occasion, a complete stranger came up to me afterwards,, and told me about a member of their family with a disability.

There are a lot of us out there, and if you follow the news on autism, there are more of us every day.

Often we would take a few minutes to talk about the difficulties involved with rearing a child with a disability and the stress, not just about behavior, but also of not knowing where they will be developmentally in 10 years, or 20 years, or after you’re gone.

I learned that I wasn’t alone.

Recently, a group of us in Yankton formed our own “Mothers of Disabled Children” support group. It’s small, and we’ve only met a couple of times, but I already look forward to hearing about what’s going on with the other moms and their kids — without judgement.

It is a great example of communication with the community, both in the happenstance encounters she describes and in the intentional formation of groups and use of local information sources.

 

Annuals

Our publisher’s site has another excerpt from our book up for ya.  It posted with some typos (since corrected) which was kinda funny because it is an excerpt about things getting out of our control…

Flowers Olde RectoryHere in South Dakota, the weather extremes must be navigated. If you plant before spring locks in, a frost can occur, and the annuals are history. In the midst of a broiling summer, a thunderstorm can sweep in and dump inches of water. You have mud puddles where your planting once shined. The blazing sun in the bright blue sky, like the pattern for our state flag, fries fragile flowers. The result is that we’re on hiatus from planting flowers here.

Joey’s autism does yeoman work of blowing up my fantasy of predictable order. Just when something seems to work, it breaks down. For example, Joey loved the water. One of my first memories of him appearing “normal” in public was at a beach where he ran out to the water and let the waves chase him back, all the while laughing just like the other little kids. But it wasn’t just the ocean. Any water made caring for Joey easier. Then he stopped liking water.

Give it a read.  Hope it is helpful if you’re in the midst of a “things are getting away from me” mood.  They are, of course, getting away from you.  But you’re OK.  No, not FEELING OK.  You’re OK because you are, against all the evidence, the very best resource that the universe sends to those in your care.

Holidays and Expectations

Ah, the holidays.  Happy memories of childhood magic float into our thinking, only to crash upon rocks of present reality.

This can be acute for caregivers.  We want to enjoy the season; we want to make magic for those in our care.

48362608_10217973652521354_2826689720354865152_oWe’ve been fortunate.  Our son with autism loves Christmas.  I’ll just share this picture-worth-a-thousand-words…

But he’s also done numbers on our memories and expectations (and property and bodies) over the years.  As I wrote in Raising a Child With Autism,

Joey has taught us a lot about saying goodbye to things we valued and enjoyed. We had a set of stoneware mugs from the bed-and-breakfast where we honeymooned. He threw one and shattered it. We kept a little mesh bag of Jordan almonds from a place setting at our wedding reception. He ate them.

The smiley kid by the Christmas tree?  You mean that happy child?

As I went on to write in the same chapter of the book,

Taking care of one off-the-wall, scary child of God means that a bunch of our nice stuff will get trashed. We can go down with our things and drown in a lake of resentment. Or we can find the love in our hearts that makes the well-being of that one person worth all the losses. More than this, if we open our eyes of faith, we can see God’s love for us.

Prayers that your holiday – holy day – catches even a bit of the holy.  A little goes a long way.  Little town of Bethlehem, a baby in a manger, from what seems small comes divine blessing.

Little you in your little part of the universe – you are a blessing to those in your care.

There’s nothing like glue for the holidays

I came across a piece from Canada’s National Post that describes family care givers as the “glue” that keeps national health care in one piece:

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Man, ultimate? Waterproof?  In&Outdoor?  Wish I was this bada**

“Family caregivers provide the vast majority of care that happens in-between appointments with physicians or in-between hospital stays or different interactions with the health-care system,” said Christa Haanstra of the Change Foundation, an independent health policy think-tank dedicated to enhancing patient and caregiver experiences.

“There’s a lot more health care happening in the home, provided in large part by family caregivers,” said Haanstra, noting that caregivers are often invisible in the health-care system, with their contributions going unrecognized as well as unrewarded.

“We really think about them as the glue that keeps the health-care system together.”

The article goes on to describe the cost to the care givers:

…61 one per cent admitted they took on the role because they believed they had no choice, with many at times feeling trapped, helpless, frustrated and overwhelmed.

The survey found 36 per cent of caregivers felt depressed and 33 per cent were resentful of their role, with almost half overall saying caregiving had negatively affected their ability to have personal time, engage in travel or enjoy a social life.

One-third said they had experienced financial costs due to caregiving, including out-of-pocket expenses, time off work and turning down career opportunities. Eight per cent lost their jobs due to caregiving responsibilities.

Beyond the statistics are the personal accounts.

(76 year old Don) Mahood was Mary Charlotte’s 24-7 caregiver, until his wife of more than 50 years was moved to a long-term care facility about a year ago.

“At the end, I had to dress her, bathe her. I had to do everything, she couldn’t brush her teeth,” he said. “When I look back, I don’t even know how I did it myself.

“I was worn to a frazzle.”

Though caring for his wife was a labour of love, the disease put an end to their plans to spend part of their retirement years in Florida. Mahood also had to give up activities such as playing hockey, and his social life faltered as long-time friends dropped by the wayside.

The winter holidays are here.  There will be funds appeals of all kinds, and Facebook memes of appreciation for those who work while others party.  And all of those are good things – not knocking them at all.

But don’t miss that rapidly drying out bit of glue that helps keep society together – the amateur, shanghaied-by-circumstance army of folks in homes all around us, trying to keep things festive and “normal” in situations that ain’t.

To mix metaphors, I’ll recall what Jesus said to his disciples, You are the salt of the earth, but if salt has lost its taste, how shall its saltiness be restored? It is no longer good for anything except to be thrown out and trampled under people’s feet.  (Matthew 5:13)  Care givers around us know what it’s like to lose their vigor and be trampled down by routine.  We look like ourselves but we lose ourselves.

Reach out.  Help the glue stay sticky and the salt stay salty.  Some practical ways to do that are suggested by another care giver and blogger.

Master’s Degree in Grumpy

Sorry to have been incommunicado for so long.  Various aspects of life have run over me like a train of late.

This morning a friend was asked about her laid up spouse, “How is he?”

She replied, “He was very grumpy.”

I actually had something to say about that and I’ll repeat it here,

 

sophia behind me

Sometimes grumpy just sneaks up and whispers in your ear.

…”grumpy” is a frequent state for someone in your care. I interact with lots of other caregivers and it is one of the most frequent laments – “Why is the person I’m taking care of so nasty to me sometimes?” The loss of health and with it the loss of freedom, power, and whatever else gets dumped on the person who is loved, trusted and, unfortunately, in firing range. Praying for your husband… and praying for you as you help carry this cross.

To which she replied,  “Tim, that was brilliant and you’ve changed my life so much for the better.”  “Well my hubby has earned a master’s degree in grumpy lately. Even his legendary sense of humor is in recession.”

Grumpy goes with the territory in care giving.  It’s one more stinky pile of what we walk through.  We need to remember that those in our care would give anything to get up and walk freely through something, even a stinky pile of whatever.  And whether we recognize it or not, they sniff out the bad moods we try to hide from them.

Grumpy goes both ways.  God help us all.

Meanwhile, there’s a little snippet from my book for your free perusal over at the publisher’s site. I think I needed my own words this morning,

All people deal with having familiar things plucked out of our lives. And many of us suffer with minds and emotions conditioned to regard such uncomfortable experiences as punishments.

No wonder we’re grumpy.  Hang in there, friends.

Because

I’ve been whining about the sorting of post-care-giving issues, haven’t I?

OK, here comes a celebration of the freedom that seeps back into life.

Hatch 2018Today I’m roasting Hatch Chiles.  Most people are all about pumpkin products as summer turns to autumn.  But these beauties from New Mexico make the season for me.  Wish I could share the aroma with you.

It is not a fast process, but I can take my time on a blessedly slow Saturday morning.  Did I mention the aroma?

I’m not having to watch over my shoulder, or listen for booms and bangs, or make sure someone isn’t too close to the oven.

Because today I don’t have to.

Last night we had friends over for some prayer and Bible study, and we sat out on our recently cleaned deck because it was a lovely evening and because nobody had to stay in the house on safety patrol, or to administer meds, or clean up a bathroom, or or or or anything else.

Because we didn’t have to.

If you’re in the midst of care giving (as we were for more than two decades), savor your respite time.  It is a break from what you’re in all the time, but it is also a taste of something that is coming.

Because what you’re doing today will not be forever.

The Book of Common Prayer captures what I’m trying to say, albeit in the cosmic sense,

Almighty God, who after the creation of the world didst rest
from all thy works and sanctify a day of rest for all thy
creatures: Grant that we, putting away all earthly anxieties,
may be duly prepared for the service of thy sanctuary, and
that our rest here upon earth may be a preparation for the
eternal rest promised to thy people in heaven; through Jesus
Christ our Lord. Amen.

 

Changes

We went to our son’s annual Individual Service Plan (ISP) meeting last week, the first since he moved into a group home.  What the staff said made our hearts glow,

It’s been one of the best transitions we’ve ever seen.  It was hard to think up things for the agenda.

It’s really been that good.  He’s taken to the new arrangement and is healthy and happy.

Here on the empty nest home front, we went for some changes of our own.  When we started this blog we put up our masthead picture of the backyard dog run.  It was built by the previous owners.  Our dog never took to it, whined and barked enough to bug the neighbors and became an inside pet.

Anyway, the old picture captured the increasingly weedy and decrepit dog run with a neighbor’s well groomed yard just over the fence.  It evoked that care giving feeling that says, We’re all messed up while the world just beyond is going fine.

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The old dog run got more and more weedy, run down, rabbit and who-knows-what-else infested over the years.  We decided it was time for it to go.

 

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In came a dumpster and out came a friend with sledgehammers and a power saw and assorted other demolitiony goodness.

 

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And, voila, our yard is nice and orderly like the rest of the world.  Guess we’re not caregivers no mo’.

Of course this blog has sounded off before about how we are dealing with all kinds of deferred maintenance on ourselves as individuals and as a couple.

There are good PTSD sites out there and this won’t try to do what is already being done better.  It is enough to say that the fallout from care giving sticks around long after the work is done.

But doesn’t the yard look nice?

Caregiver Health Risks

Not sure we needed research to tell us this but maybe it will awaken some compassion in others who haven’t walked down (yes DOWN, as in stumble, fall, get up, repeat) our path.

Caring for others ain’t good for your health.  And if you fit certain profiles you’re at greater risk:

Participants with emerging chronic health problems experienced the biggest declines in health, with rates of hypertension, arthritis and rheumatism, digestive diseases, chronic lung and heart diseases more than doubling.

Being older, female, not receiving a pension, not feeling financially adequate and having depressive symptoms and functional limitations at the start were also associated with worse health among caregivers at the final follow-up.

deadI don’t have most of those factors working against me but stress about not feeling financially adequate is kicking my posterior.  Well, that and turning 60.  I get short of breath and feel overall weakness after bouts of anxiety – it’s like I can feel my own death settling in.

So, you know the drill.  You go to a doctor or other professional or even a friend you perceive as wise and you lay it all out and the reply is,

Hey, take care of yourself.

Take time for you.

Exercise, diet, sleep.

And of course your anxiety goes back up because these are exactly the things that are getting wiped out of your life and why you asked for help in the first place.

I go to the Bible often because it’s not the pie in the sky that many assume it to be.  Much of it is written to and for people caught in rotten situations.  There’s precious little “here’s how to fix it” and much more empathy and simple encouragement to hang in there, because who you are and what you do has meaning.  Here’s a good bit:

“God opposes the proud but gives grace to the humble.” Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you. Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour. Resist him, firm in your faith, knowing that the same kinds of suffering are being experienced by your brotherhood throughout the world.  And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. To him be the dominion forever and ever. Amen.  (1 Peter 5:5-11)

Yes – there are wretched things happening to you and to many folks just like you.

No – it won’t go on forever.

Yes – There are evil voices trying to talk you into despair.

No – those voices aren’t the final say.

Yes – there is divine power on your side.

The Greek word translated cast (cast your burdens) is a verb associated with throwing loads on pack animals.  Which is to say that when you pray – when you try to talk to the divine power about what you’re going through – you do NOT need to be elegant, gentle, proper, pious or whatever you think that talking to divine power entails.

Dump the load on God and insist – insist – that he carry what you can’t.

Did you catch the next line?  God will because he cares for you.

God can be the caregiver to caregivers.  Because the divine power does not get sick and die from taking care of us.  God has no risk factors.