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.

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.

The national need grows

Sobering stats in the Minneapolis Star Tribune:

Soon, Minnesota and the nation will reach a demographic crossroad. In 2030, the first wave of the baby boom generation will turn 85, an age when people are twice as likely as those even a decade younger to need help getting through the day.

Family sizes have been shrinking for decades, which means there will be fewer adults to care for older relatives in the years ahead. By 2030, the ratio of informal caregivers to those in most need of care will be at 4 to 1, down from a peak of 7 to 1 in 2010. By 2050 in Minnesota, which has one of the nation’s longest life expectancies, there will be fewer than three family caregivers to care for each family member over age 80.

And this isn’t just in our homes, but in the institutions we assume will handle the need:

The need is great and getting greater.  Many care giving agencies are recruiting help.  If you know folks who might have an aptitude for caring (qualities like compassion, patience and resilience), the opportunity for meaningful work is out there.
I was invited to speak at a care giving agency in April, and the staff brought up the encouragement of others to enter the field as an important contribution the wider community can make to their efforts.

Autism Awareness Month

There are so many good voices and resources out there to give greater insight into the lives of people with autism.  More and more, they are able to step up and represent.

Book CoverIf you know a family caring for a person with autism, chronic illness or other special needs, we hope our little book might be one useful voice you hear.

If you buy a copy and want it signed, let us know via the email button at our Facebook Page.  We’ll give you mailing instructions and work out a plan to get the signed book back to you or to someone you want to have it.

Thank you for reading here.  Most of all thanks for caring about autism, caregivers and the world around you.  Many blessings to you.

No trick! This is a treat…

Governor Dennis Daugaard of South Dakota officially proclaimed November as Family Caregivers Month!  Give his official Proclamation a read – that’s you lurking somewhere in the statistics and words of praise.  1

Father’s Day is coming…

And our book would be a great gift for any care giving dads you know!

book-cover

 

Also, we could use your help with reviews that help others take a look.  If you have the book, please go to the link and post a review on Amazon.com.

One caution: if you didn’t buy it on Amazon, they get huffy about posting your review, unless you include something specific like, “I bought this at a local bookstore,” “I received this as a gift,” etc.

Thanks in advance! Hoping to pump up to 30 reviews soon.

A great site to visit…

A member of our son’s care giving team just shared Disability Scoop.

Lots of great content at the site, covering an array of disability issues.

I took a screen shot of the page… couldn’t resist the headline.  I mean, if they’ve managed to make air travel a grim experience for all of us, imagine the added misery for passengers with special needs.

Disability Scoop

No respite, no completion?

Most of what we blog here is about the current stresses and strains of care giving.

This morning I blundered into an article that shows how it can clobber our future.

The sandwich generation — those who have children and at least one living parent — is having a hard time saving for retirement because they are spending a good percentage of their money taking care of family members.

The steady flow of emergencies (they’re often the normal state of things) generated by care giving can lead to job loss or change and the temptation to cash out retirement savings for quick cash,

As of May 22, approximately $26.3 billion in total savings has been cashed out of the retirement system this year, according to the National Retirement Savings Cash-Out Clock. If nothing is done to stem the outflow, this cash-out “leakage” of assets from the retirement system will reach $68 billion by year-end.

This is a major financial health crisis affecting millions of Americans — and industry research indicates that younger workers in the lowest income brackets, as well as women and minorities, are at the highest risk of cashing out. Confronting this crisis requires a concerted, unified effort by plan sponsors and record-keepers to create conditions that facilitate seamless plan-to-plan asset portability for all participants.

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Sure, piggy banks are traditional, but who’s gonna rob a sharky bank?

The article offers some good suggestions, both for caregivers and for their employers. Go have a look – it’s not all gloom and doom but it calls for some work.

And ain’t that just what care giving is all about?

On the spectrum

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Lifted here

That people with autism live on a spectrum was clear from recent conversations at our forums and book signings.

When Melissa and I ask  people there about their contact with autism, we hear a diversity of experiences:

  • My nephew with autism just finished college
  • Our friend’s daughter with autism just got married
  • Our grandson with autism wrote a book
  • He’s very high functioning but socially awkward 
  • Nobody invites us to anything because he gets violent

For caregivers, the spectrum creates obvious problems.  Therapies that were useful in one situation simply bounce off of another.  Support networks are hard to build – yes, misery loves company but finding a common set of experiences and resources is not easy.

In our family, we are blessed that Joey is emotionally connected and affectionate.  Many families of people with autism don’t have that and expend sacrificial love with little in return.  It is hard for us to imagine their challenge, even though we might have many other common experiences.

Steve Silberman makes some important points as we wind up (did you know it was April?) Autism Awareness Month.  So much science is about “root causes” when the daily struggle is about quality of life for people on the spectrum and their caregivers,

…the lion’s share of the money raised by star-studded “awareness” campaigns goes into researching potential genetic and environmental risk factors — not to improving the quality of life for the millions of autistic adults who are already here, struggling to get by. At the extreme end of the risks they face daily is bullying, abuse, and violence, even in their own homes…

Obviously, even a month of acceptance will not be enough to dramatically improve the lives of people on the spectrum. What could be done to make the world a more comfortable, respectful, and nurturing place for millions of autistic kids and adults  — now, starting today?

There’s no one answer.  But there are millions of potential answers in the hearts of many who care for people with autism and those who know and care about our families.  Caring people are on a spectrum, too, from kindly neighbors and friends to the folks who form public agencies and organizations to medical and therapeutic professionals…

…to patient strangers who take the time to be kind in the face of confusing and even ugly situations.