Maybe Next Year

Growing up in L.A., I was a fan of the Los Angeles Angels when they were a brand-new American League expansion team. When I was a kid, they played in the stadium named for the “real” team: the Dodgers.

But in my childhood, they were a “maybe next year” team. Maybe next year they would win more games than they lost. Maybe next year they would climb up from the bottom of the standings.

We have a “maybe next year” tree by the street in front of our house. We needed a tree out there to block some of the summer sun that routinely fried our lawn. We also craved fall color, so when a landscaper showed us pictures of a maple called a “Fall Fiesta,” we said, “Wow, look at all those fiery leaves! Put one in right now!” So he did. And all the budding leaves fell off, and the tree went dormant. We looked at our bare little tree all winter, praying that dormant was something different from dead. The tree budded in the spring. Of course, it hardly cast any shade, little thing that it was.

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The tree done good!

The next year was better. There was noticeable fresh growth on top. It grew taller. Its leaves seemed fuller. It didn’t shield the lawn from the sun, but it cast a respectable shadow where the dog liked to pee on hot days. There were some deep red leaves in the mix for autumn. Each year adds.

Like waiting on a plant to bloom, taking care of an autistic person requires patient hope. Your heart, and maybe your mind, will break if you are into precise timelines. “Next September our kids will achieve ‘X’” must be held loosely. “X” might happen in October, or November, or the following spring, or September two years out, or not for a very long time.

Like hopelessly loyal sports fans or amateur gardeners, caregivers have to keep telling themselves, “Maybe next year.” And in the next year, or tomorrow, or a few seconds from now, a once-abandoned hope arrives as a surprise.

Gardeners like ourselves must learn and relearn “deferred gratification.” We might want to stick a stalk in the ground and see a tree the next day, and we want to think that one or two sit-downs with an exercise book will have our kid reading literature in time for kindergarten.

But when it comes to caring for someone with special needs, it is important to hold a goal patiently. If it is a good goal, it is worth holding onto in heart, mind, and habits over many seasons.

Like travelers using the four cardinal directions on a map, people who follow Jesus find spiritual orientation from three cardinal virtues: “faith, hope and love” (1 Corinthians 13:13 NIV). Hope keeps us looking to the horizon, to what’s next. We hope for what we do not see or have, but believe what can be out there. Hope allows us to act with purpose, believing that our efforts are worthwhile and taking us toward a good destination. It means long seasons of waiting, of doing the right stuff over and over even when a desired result isn’t coming into view.

When we come to terms with hope, we find that it isn’t really about a particular event, thing, or outcome, but it’s about coming face-to-face with the one who is calling us forward.

Edited and shared by the publisher, from my book.

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.

How Can I take My Mother’s License?

One of the hardest and most significant transitions in aging and family care giving…

Shonda and Homecare

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I wish I had more time to write about this question. I’m helping a family with this very issue and few years back I had to tackle this issue head on with my family.

I found this quick article please enjoy

How to take Mom’s license

Just a few hints;

  1. Every situation and every person is different.
  2. Have Pre-talks with family, Friends and/or Physicians before you present this issue head on. I call it, “Do a little Homework” Beware of landmines that maybe trigger points.
  3. Try not to let it get heated, if it does bring it back to the facts or start the conversation later. Please be care if dementia is involved they may tie emotions to the subject even though they may have forgotten the last time they had the conversation.
  4.  And if possible use your “Code Word” if you and your loved have one. (In a prior…

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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,

 

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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?

Leaf me alone!

adult alone autumn brick

Photo by Pixabay on Pexels.com

Leaf me alone is ethnic humor that could once pass between friends of different backgrounds.  It was cool when my Mexican American friend used it 40 (are you kidding me?  Forty?) years ago in our Army barracks in (then West) Germany (quite a history lesson here, eh, kids?)

When my friend John C. (whom I annoyed by calling him Juan Carlos) was having a bad day, he would exaggerate a stereotypical Chicano accent and tell the world, Leaf me alone, esay.

It’s Wednesday as I type this.  Hump Day, midweek, and, deep down inside, a caregiver somewhere is screaming at the cosmos.  Leaf me alone, esay.

My morning meditation turned up that very scream, aimed at no less than God, albeit in an ancient Hebrew version:

Take your affliction from me; I am worn down by the blows of your hand…Turn your gaze from me, that I may be glad again, before I go my way and am no more. (Psalm 39)

While our insides might scream Leaf me alone and Turn your gaze from me, family caregivers are good at smiling for the outside world and thanking people for well intended compliments like You must be a very special person for God to entrust you with this.

Some friends are perceptive enough to make a face and say, Man, I’d go crazy if I had to do that.  Or, as one counselor told a family caregiver, You’re very skilled at living in hell.

I’ve noticed on doctor visits that the “depression inventory” forms the nurses sometimes require include feeling like you would be better off dead alongside the more direct any thoughts of harming yourself?

The former is more common.  It’s not necessarily a threat of suicide but is an inner dialogue by which overwhelmed people say leaf me alone.

That doesn’t mean we’re just “venting.”  It is horrible to be in the place where life (or at least our place in it) is no longer viewed as a gift to enjoy.  Such thoughts can indicate the need for medical help, and we shouldn’t be ashamed of that.  Care giving takes a toll.

No great advice for you here.  You already know the responses… things like

  • Take respite.  I know, I know, IF it’s available.  Which it sometimes ain’t.  Like a prison inmate, you might have to create it in your own head.
  • Have friendships/activities not tied up in care giving issuesLeaf me alone is about the grind, not about all relationships and activities.  Some are welcome – so welcome them.
  • Try to prepare and eat healthy foods.  I can tell you that I’ve become a decent cook over the years.  It is more work but if you fight off the urge to microwave junk and get on with preparing more fresh stuff, you’ll feel better and you’ll find some fun and good mental activity in it.  And talking about recipe ideas with others is a great way to keep conversations from wallowing in care giving stuff.
  • Exercise – even if just walking the dog around the block.  As Mrs. Obama said, Get up and move.  Get your blood flowing and your heart and lungs working.  Turn some of the boring household chores into opportunities to stretch and flex yourself.  If you normally reach with one hand to do a task, try using the other hand.  If you tend to favor one knee while kneeling to pick up stuff, bend the other one.  Your whole system will benefit from little efforts like these.  Taking on one resented chore each day can give a sense of accomplishment, too.

I know – these things are hard to establish and maintain in many care giving situations.  But they are the antidotes to Leaf me alone, which was funny the way my friend said it but not funny in care giving.

Sprechen Sie my stuff?

Back in my Army days in Germany, I was sitting with some friends in a restaurant bar.  There was another American at another table, trying to pick up a German woman.

She didn’t speak much English, it was clear, so he attempted to connect by… getting louder.  As if raising his voice could overcome their lack of common language.

I ran into a couple of interesting articles today, each about building connection with people in our care.

In Getting Into Their Heads, Carol Bradley Bursack encourages caregivers to refrain from arguing with those in our care who live with dementia.  She encourages rolling with delusions where practical, building a bridge to the caree’s reality,  in one case buying a particular school’s class ring for her dad, who believed he’d lost his (he’d never had one in the first place).  She writes,

This is only one example of the effect of not arguing about “facts” with someone who has a different view of facts than you have. To someone with dementia, what they believe is just as true as what you and I believe to be true is to us.

She is quick to acknowledge that this is not always feasible, but still a tool to keep in our kit,

Sometimes…all we can do is try to comfort them and get them through to the next cycle. But why would we want to do that when we don’t have to? Isn’t it easier to agree that the sky is green that day than swear it’s blue? Who does it hurt?

A New York Times piece explores building social connection with people living with autism.  The two professors who combined on it are concerned that people assume limitations rather than explore possibilities:

Insisting that autistic people behave in ways that they are unable to can lead to feelings of learned helplessness, self-defeating thoughts and behaviors and, eventually, social withdrawal. As an autistic participant in one study explained: “I have been endlessly criticized about how different I looked, criticized about all kinds of tiny differences in my behavior. There’s a point where you say, ‘To hell with it, it’s impossible to please you people.’”

The danger of being assumed to be socially uninterested is especially acute for the roughly one-third of autistic people who do not use spoken language reliably. Like other autistic people, they behave in ways that get misinterpreted, and they may not be able to correct the record.

For all of us, whether we are socially motivated at any given time depends on much more than our innate predisposition for sociability. It also depends on how we’ve been treated in the past; our ability to tune out distracting sights, sounds, smells, thoughts and feelings; and the attitudes and behaviors of potential social partners.

They are articulating what many agencies call Person Centered Care.  We do well to learn the modes and means of social interaction that work for a particular person and build from there.

Our son with autism uses movie lines (especially lyrics from musicals) to reach out to others, and can be engaged in return by those who “learn his language.”  He is capable of expressive and receptive social communication, but not always on our expected terms.

So, like the GI at the German table, don’t just raise your voice.

Well, unless the person in your care likes yelling.