Support for the family caregiver | CaringWise

Really, your friends just mean to be helpful—but it’s astonishing just how clueless they can be. Below, a list of 5 things caregivers often hear—and some responses that just might work.

Oh my friend’s dad had that, and it was awful!
What you want to say: “I don't need you to tell me how bad this is.”
What you do say: “Oh, do me a favor, please. Find out what worked best for them to ease the pain.”

I can tell you're stressed...you've put on a little weight.
What you want to say: “I am stressed. What’s your excuse?”
What you do say. “Daddy and I share a bowl of ice cream every afternoon. It’s the highlight of our day.”

How long does he have left?
What you want to say: “Longer than our friendship.”
What you do say: “We are grateful for every moment.”
Wow, you look worn out!
What you want to say: “Since I am carrying the ball for all of us, I’ve had to give up sleeping.”
What you do say: “It’s true. I could really use some help. Could you take Mom to her PT appointment this week?”

Do you worry that you'll get it too?
What you want to say: “Just like social ineptness, Alzheimer's/cancer/Parkinson's  isn't contagious.”
What you do say: “I take the best care of myself that I can, and I spend my time thinking about what I can do to help Mom.”

Caregiving is stressful. Moreover, it is more stressful when you fail to recognize that you’re a caregiver, when you think you are just “helping out,” and then wonder why you are so exhausted and worried and mad all the time. Spouses are particularly prone to this trap—and it can lead to dire health hazards for them. 

Our advice: Don’t brush off what you (or your mother-in-law) are doing: make sure the caregiver gets care too. Here are five tips for releasing that stress.

1. Channel your anger. Letting it out is actually healthier than keeping it bottled inside (which ups your risk of high blood pressure and heart disease). Next time you feel mad, punch a pillow, do 10 jumping jacks, or scream in the privacy of your car with the windows up. Call a trusted friend and vent – or write out your feelings (in a diary, not on Facebook!).
2. Play mind games: Mentally put all your worries in a big box. Lock the lock. Send the whole thing to the bottom of the sea. Mail the key to China.
3. Breathe. Slowly. Five counts in. Five counts out. Keep going for at least five minutes. Repeat as needed.
4. Seek joy: Don’t focus on worrying about tomorrow—that’s borrowing trouble and adding stress. Enjoy the good parts of today, and if you can’t find any, find a snapshot in your mind of a happy memory and relive it.
5. Be realistic: Control what you can—let the freezer be your friend, keep up with paperwork,  get cleaning help—and let go of what you can’t control. This includes the temper of the person for whom you are caring.

Cash and Counseling Program
In good news for some, 15 states have a Cash and Counseling Program that allows people who are eligible for publicly supported programs to manage their own budgets.

• They can hire their own personal caregivers, including friends or family members. Of course they are also responsible for hiring, supervising and paying these individuals, as well as maintaining accurate employment records.
• They can also use the money to pay for things like transportation services, assisted devices, necessary home modifications and appliances.
• To see the complete list of states and learn how to apply, visit Cash & Counseling.

Consumer Directed Personal Assistance Program (CDPAP).
In New York state, seniors who are Medicaid-eligible and in need of home care, can hire someone they know to become their personal assistant. However, the caregiver cannot be the mother, father, spouse, son, daughter, daughter-in-law or son-in-law of the care recipient. So whom does that leave? Well, it leaves cousins, aunts, uncles, nephews, and nieces and family friends. Still that means someone you may feel comfortable with, but who would not necessarily do the job for free. As with the Cash and Counseling Program, care recipients are responsible for good record-keeping. To find out more, visit New York State's Department of Heath website and type CDPAP in the search box.

Comprehensive Assistance for Family Caregivers
Under the "Caregivers and Veterans Omnibus Health Services Act of 2010," the VA offers additional funding for caregivers, including a monthly stipend, travel expenses, counseling and respite care. You must be caring for a veterans who sustained a serious injury in the line of duty post 9/11 and who needs personal care services due to those injuries. Learn more at the the Department of Veteran Affair's Caregiver Support pages.

1. Set attainable goals for yourself and your loved one
2. Stay involved with your work and hobbies—your “own” life.
3. Reach out to other caregivers who know what you are going through.
4. Exercise—as regularly and as vigorously as your health and time allow.
5. Build a support system, to help get tasks done, to alleviate some of the burden, to maintain connections.
6. Take time to focus on your own appearance; just as how we look reflects how we feel, the inverse can be self-fulfilling too.
7. Make a list of your stressors; getting it on paper can help it seem more manageable.
8. Find three things every day for which you are thankful.
9. Talk to your friends–don’t let yourself get isolated.
10. Take care of your own health; you won’t do anyone any good if you get run down.

Fully one third of adults over 65 and about half of those over 85 have significant hearing loss. And you know that aging boomers—we lovers of rock n’ roll—will only swell those statistics.

This can be irritating both for the person who can no longer hear so well (imagine the isolation) and for you, as you try vainly to get your point across.  The natural response is to say it a little louder—and in no time at all you are yelling at the top of your lungs. Not surprisingly, you now feel mad, too. Soon, everyone is storming off in a huff.

This is no way to live. Plus, shouting is kind of insulting, when you think about it, and actually makes enunciation harder to understand. Instead:

• Improve the odds of getting your message across by delivering it face-to-face, rather than from across the room or, worse, from down the hall.
• Turn off the TV or radio to eliminate background noise; even the low hum of the dishwasher or a leaf blower outside can muffle your words.
• Rephrase, rephrase, rephrase. If you are saying, “coat” and they are hearing “goat,” your loved one’s brain starts busily trying to figure out why there is a goat in the living room and how you’ll get rid of it and the conversation goes nowhere. Instead try substituting “jacket,” “mackintosh,” “fleece,” “parka,” until you get the point across.

This last one is important—and you can use it anywhere, anytime.  Best of all, it’s kind of fun for you too. How many ways can you find to say, “Let’s go shopping!”

Guest post by a Cambridge Caregiver

Back when I was a bride, and when my in-laws were the age I am now, the matriarch of my new family asked me to help her out with a “little project.” After more than two decades of diapers and scouts and sleep-overs and graduation parties and one grand wedding reception, she and my father-in-law were done raising their family and were moving on, leaving behind the big Victorian house that had been the center of their lives.  There were books to give away and furniture to divvy up and loads to take to Goodwill, but what she wanted me for was to tackle the attic, and help her decide what to keep, what to toss, and what to give away.

I had all the enthusiasm of a twenty-something efficiency expert, and no experience with the minefields that are represented by a lifetime of attic-banished clutter.  What fun!  I thought.  And really, how easy!  There’s a big dumpster in the driveway.  Most of what’s up there is mildewed and falling apart.  I’ll encourage a lot of tossing, right out the window.  She’ll be glad to have me there to keep her from saving stuff she doesn’t need, can’t use, won’t miss. 

Needless to say, it wasn’t so simple.  Everything had value, everything meant something.  Boxes of old Kodak slides, carefully organized into metal boxes for projectors that no longer exist.  Old curtains and fussy hand-me-down furniture that had been used as theatrical stage props until they’d given out, torn and frayed.  Workbooks and check stubs and notebooks and three-ring binders, some filled with memorabilia from trips taken, routes followed, menus ordered from.  Tattered photos of football teams, camp counselors, college outings, Christmas cards.  Names forgotten, faces fading.  What would it mean to just toss it all?

Needless to say, it couldn’t be done.  Not, at least, without remembering some long ago stories.  As it turned out, that’s where I became truly useful.

We’d open a box.  My mother-in-law would thumb through it.  Something would jog her memory, and off she’d set, Scheherazade-like, with a tale about that person, that day, that voyage, that vacation. Far beyond my youthful ability to lug and toss and forget, my role as the listener—and rememberer—proved to be my highest value. 

Remarkably, the telling of the stories didn’t necessarily make the physical item more valuable to my mother-in-law.  If anything, the telling of the story released her from having to own the thing itself.  And with me there, as the willing vessel to fill to the brim with memories, the tossing away part became possible.  Once the tale had been shared, and once we had the satisfaction of both knowing that the other owned that history, then, voila! The news clipping, the yearbook, the scrapbook—the whole box could be deep sixed.   

Oh, we held onto some precious items.  I had some ancient football team photos framed, and we saved some of  her wedding day photo albums and honeymoon slides, the colors so Kodachrome bold, the skies so blue over Francestown NH, Yosemite, Diamond Head.  Letters we kept, for the stamps and the penmanship and the snapshots of A Day in the Life. Most of what we took, down from the attic, we took in our hearts.  And the gift I got, and the gift I gave, was to be present.

Now, two more decades later, my in-laws are down-sizing once again, this time to assisted living.  With the passing of time has come more photos, more mementos, more accumulated stuff.  This time around, though, the stories won’t be new ones to me, and the faces will mostly be familiar.   This time, as before, I will be the vessel into which the stories flow.  And I will be grateful to have figured out that being present to share the stories matters more than all the accumulated wealth of things.  I will be richer for what I learn, as together, my mother-in-law and I edit her life down to what matters most, what will fit in their new cozy home, what goes in the dumpster, and what I will take with me in my heart, as memories.