Caregiving Blog

Caregiver Stress is a Recurring Problem

Pete — Tue, 17 Jun 2008 19:13:54 +0000

To be perfectly honest, there are really only two topics to write about in a blog about caregiving. One is the resources available for caregivers, and the other is caregiver stress. The caregiver who doesn’t find the work stressful is a rare bird indeed.

A recent post in the blog Caregiver Relief provides a good summary of the issue and offers a few suggestions about how to deal with it.

The hard truth is that no one is going to make family caregiving easy for most of us. There are some ways, however, to make it doable. That’s really all that most family caregivers need or expect.

The Philoctetes Project - A Caregiver’s Eye View

Pete — Sat, 15 Mar 2008 22:06:23 +0000

Something like 2,400 years ago, the Greek dramatist Sophocles wrote a play called Philioctetes, the story of “a difficult patient.” Philoctetes, a genuine war hero, has suffered a terrible wound and has been abandoned by his fellow soldiers. He is unkempt, his infected foot is messy and gives off a terrible odor.

Philoctetes whines, he is endlessly demanding, he exhausts anyone who offers to help him. Yet he is a genuine hero to whom the Greeks owe much, and his need for care is very, very real.

The Philoctetes Project uses dramatic readings of the play to stimulate discussion about psychological, medical, political and ethical issues that arise around those who are chronically ill or injured. Doctors who participate gain valuable insight into their own behavior toward difficult patients–and also a glimpse into the world of the family caregiver.

The basic scenario is depressingly familiar to family caregivers. Mom or Dad, Uncle Joe or some other family elder to whom you owe much, needs care. You feel a strong personal obligation to provide care, and yet you are conflicted. Perhaps your family elder is a difficult person. Maybe it is someone whom you love but have never liked very much. Maybe providing care requires you to do things you find highly unpleasant—wound dressing, toileting, etc. Maybe you wonder why you have to do everything, while other family members feel no need to do anything. Maybe no one, your elder included, ever thanks you for anything you do. And no one seems to appreciate the extent to which you have subordinated your own life to the needs of your elder.

The special relevance of the Philoctetes story for caregivers is this: no matter how isolated and exhausted you feel as a caregiver, no matter how much your own darker impulses may tell you that no one has ever known what you are going through, the undeniable truth remains: caregiver stress and burnout are as old as civilization, and probably older. Whatever you may hear about the special burdens of the current generation of caregivers, people have struggled with the same issue for thousands of years.

It’s not that the things we suffer haven’t happened before, caregivers. It’s just that they never happened to us before.

Video Finalists Are Available for Viewing

Pete — Thu, 13 Mar 2008 21:23:25 +0000

Check out this link to see the videos submitted to WGBH. As you might expect, opinions are all over the place on all of them. I found that I had the most to say about the one called “Dammit, Dad,” probably because it points out the particular challenges guys face in becoming caregivers. The Sandwich Generation father in the video is a total jerk, but he’s probably trying to handle his situation in the same way he’s gotten through most other things in his life — by somehow bulling through.

In caregiving, the bulling through method doesn’t work, squanders whatever goodwill the would-be caregiver has to start with, and still manages to leave that would-be caregiver exhausted and isolated.

The acting and production values of the video may be a little rough, but the characters ring true.

I find myself predicting that one of the real challenges of the next few decades will be finding a way for Boomer men to get through their heads that the tough guy routine doesn’t work for caregiving.

An Invitation to Readers of CaregivingBlog

Pete — Thu, 31 Jan 2008 17:33:24 +0000

Caregivers have a chance to tell their stories to a TV audience…

When I opened my e-mail this morning, I found this message:

I work for The WGBH Lab (a small part of that big PBS station in Boston) and I’m trying to get the word out about something that might be relevant to you or your readers.

Essentially, the Lab is inviting anyone who has ever cared for aging relatives (or knows someone who has) — in short, members of the sandwich generation — to submit a short video story about caring for elderly family and how it has changed their lives and relationships. We want to hear about how this issue has affected real people and hopefully create a dialog on a topic that is often overlooked. The completed pieces will be posted on the WGBH Lab website and may be broadcast nationally with “Caring for Your Parents,” a documentary that’s airing on PBS in April. If you’re interested, more information is available at our site: http://lab.wgbh.org/open-call/watch-over-me

Thanks for your time!

Sincerely,
Brian Retchless
Production Coordinator
WGBH Lab

I don’t think in terms of video myself (too old or something–I don’t know) but I’m betting that a lot of readers do. If you are one of those readers, I urge you to take this opportunity to tell your story. If enough people join in, WGBH will be able to produce a documentary that tells the truth about family caregiving. Thanks, Brian, for making this possible.

Lights!…Camera!…Action!…

Not Getting Enough Sleep? You May Be a Caregiver

Pete — Fri, 18 Jan 2008 18:58:39 +0000

Calling all sleepless caregivers. You know who you are…

You know you feel awful when you don’t get enough sleep, but here’s something that perhaps you didn’t know: Feeling bad is not the message of insufficient sleep; it is only the messenger. The actual message is a lot more serious. Carol O’Dell lays it out in plain English in a blog post entitled 5 Signs of Dangerous Caregiver Stress and Sleep Deprivation. This is the sort of thing that really gets my attention because I’ve experienced difficulties with sleep off and on for most of my life. The point, of course, is that if you’re a full-time caregiver, you don’t have to have a history of sleep difficulties in order to find yourself sleep-starved and stumbling around like a zombie.

The serious news is that the health consequences of long-term sleep deprivation (for caregivers or anyone else) are numerous and severe, sometimes even deadly. They cover a wide spectrum of health issues, including anxiety and depression, chronic illness, substance abuse from attempts at self-medication, conditions that arise from a depressed immune system, and premature death! The expression “No good deed goes unpunished” is supposed to be an ironic joke, but it can be a literal truth for stressed out caregivers who don’t take care of themselves.

You really have to find ways to get the sleep you need, but other people aren’t always sympathetic. Decades ago, for example, when I was a high school student and for the first time seeking medical help for my sleep difficulties, I ended up with a doctor who patted me on the shoulder and said, condescendingly, “Nobody ever died from lack of sleep.” It was unkind, unhelpful and irrelevant. It’s true that you won’t die today just because you didn’t sleep last night. I, however, wanted relief from a condition that was making me miserable and had left me barely able to function.

If I had been responsible for taking care of someone at that time, I wouldn’t have been able to do an adequate job. If I had taken that doctor’s dismissive remark as the last word on the subject, I might not be alive today. Dramatic? Maybe a little, but I’m trying to emphasize the point that insufficient sleep over a long period is serious. Try Carol’s suggestions in that post linked above as your first step in trying to get some rest. If they don’t work, talk to a doctor. If s/he smiles tolerantly and informs you that “Nobody ever died from lack of sleep,” reach for your coat, state that you don’t pay for worthless advice, and go find a real doctor.

Good luck and sweet dreams.

Top 10 New Year’s Resolutions for Family Caregivers

Pete — Mon, 14 Jan 2008 22:11:33 +0000

Food for thought for 2008…

OK, caregivers, it’s time to take your caregiving situation in hand. Now, everybody please raise your right hand and make these resolutions along with me. I do hereby solemnly swear that…

10. I won’t try to be the Lone Ranger

As a family caregiver, you’re a person trying to do the right thing for a family elder who needs your help. You may be the only one who has stepped forward to take on the job, but that doesn’t mean you have to do everything all by yourself.

You owe it to yourself not to try to be the Lone Ranger. For one thing, you probably don’t have the “fiery horse with the speed of light!” For another thing, you don’t have Tonto, the companion who always has your back and will bail you out when you’re in a jam.

The other people you do have – family, friends, neighbors, members of social and service clubs, members of your church or synagogue, etc. – can and will do things to help you. But you have to ask.

It may seem difficult to ask sometimes, but it’s a lot easier than trying to be the Lone Ranger.

9. I will make time for myself

Time for yourself isn’t about taking a vacation alone; it’s about privacy. The nasty little surprise about family caregiving (that a lot of people don’t see coming) is that you can find yourself isolated yet without privacy.

To do your very best for your elder, you need a place where your elder simply doesn’t go. It doesn’t have to be much. I think a private room is best, but it can be a private desk or even just a computer that your elder doesn’t use, located in a place where your elder won’t be watching you when you use it.

8. I will eat and exercise sensibly

OK, so I’m nagging you.

But you already know the reasons for sensible diet and exercise. These are things you should be doing anyway, especially since you are now a family caregiver. If you’ve been putting off the diet and exercise regimens you know you need, now is time to start them.

End of nag.

7. I will ask for outside advice when I need it

This shouldn’t be hard, but a lot of people find it so. Maybe it’s just human nature. If you don’t know the answer to a question, it’s sometimes easy to forget that other people do know. This is especially true for questions that should be answered by professionals. If you have a legal question, get the answer from a lawyer. Don’t listen to Peg at the coffee shop whose mother “was in exactly the same situation.” Maybe that situation was the same and maybe it wasn’t. Even it was the same, maybe Peg didn’t get the best advice.

Take legal questions to an attorney. Take medical questions to a doctor. Take financial questions to a financial planner or accountant.

Your local Area Agency on Aging can answer a lot of your questions and will give you trustworthy referrals for everything else. There may be other organizations in your area that can help as well. Make it your business to find out who they are.

6. I will organize my elder’s medical, legal and financial information

This goes with number 7 above. To get the best advice from a professional you need to be able to the supply the background information that professional will need. There really is a lot to do here.

5. I will keep a caregiving notebook and journal

This isn’t a gripe log where you blow off steam or a martyr book in which you write down all the reasons you’re going to heaven for being a caregiver. Instead, it’s where you record daily information about the condition of your elder and the care that elder receives.

Record summaries of appointments with medical, legal and financial advisors. Write down the names of visitors and how long they stayed. Document your daily routine. Record expenses you wouldn’t have had except for your responsibilities as a caregiver. If your elder does or says anything that strikes you as significant, write it down. Over time, your journal will become a crucial resource for you and others involved in your elder’s care.

Also, your journal will record who did what and when. It you have family members who exaggerate their own contributions and minimize yours, you will be in a position to settle some family feuds when you pull out the book.

Take a moment to visualize yourself, journal in hand, saying something like this: “Well, Aunt Irma, according to our journal, Mom last heard from you about six months ago.”

4. I will arrange for occasional respite care

If you and your elder live under the same roof, caregiving is a 24/7 job for you. From time to time you need to get away for more than an hour or two. This is where respite care comes in. If you don’t know where to find respite care, ask your caregiver group or local caregiver support agency. You can also try doing an Internet search on something like “caregiving respite and adult day care.”

It is generally agreed that the most common cause of caregiver burnout is inadequate self-care on the part of the caregiver. Your elder needs you; therefore your elder needs you to take care of yourself. No matter how much you love your work, you need to get away from it sometimes.

3. I will keep a list of tasks for people who ask what they can do help.

What an eclectic list this can be. Here’s a top-of-my-head sampling of the kinds of things it could contain:

Play cribbage with Uncle Joe
Take Mom’s car to get the tires rotated.
Drive Dad to the lab for his blood draw.
Pick up these items at the grocery store.
Take Aunt Nettie to church
Wash and fold this laundry
Stay with Grandpa for two hours so I can go out for a while.
Help with Nana’s birthday party

Your own situation will suggest dozens of items like this. It pays to have them written down, however, so that you have something to say when someone makes an offer like, “Let me know if there is anything I can do.”

2. I will become (or remain) active in a caregiver support group

Here’s another topic that makes me sound like a broken record. Yet it’s important to keep reminding caregivers of the simple fact that isolation is the caregiver’s enemy. In fact, the more challenging your caregiving situation, the more you need a support group. In a caregiver support group, you can get information, advice, understanding and personal and emotional support of a sort that really isn’t available anywhere else.

Support group members will understand the occasional anger and frustration you feel. They will identify with your uncertainty, self-doubt and conflicting desires.

Once you become comfortable with the members of the group, you can begin to speak in a kind of shorthand. Group members will remember that you are doing what you do out of love. They will not think less of you if you admit to feeling angry or frightened or overwhelmed.

In short, a support group will introduce you to the kindred spirits you might not meet elsewhere.

1. I will never say, “I will never put you in a nursing home.”

This is the big one. A few months ago, I devoted an entire post to this topic. But it’s worth repeating here: the no-nursing-home pledge is the promise a caregiver cannot keep and cannot reasonably be expected to keep.

Period.

If this seems counter-intuitive, even unkind, please read my earlier post.

There. Now, caregivers, please have a great 2008.

New Year Thoughts for Caregivers

Pete — Tue, 08 Jan 2008 18:08:43 +0000

Please give me some good advice in your next letter. I promise not to follow it.
–Edna St. Vincent Millay

I’ve always found a sort of push-pull built into being a primary caregiver for a family elder. On one hand, you want other family members to pitch in. On the other hand, you don’t want them telling you what to do. It’s a tough thing to get around because if other family members are helping they are caregivers, too. When they take on responsibility for some aspects of care, they gain the right – call it the authority – to make decisions about what the care will be.

In most cases, the person receiving care also has opinions about what the care should be. All of this can add up to a rich brew of opinions, needs, desires and responsibilities.

And resentments.

“Aye, there’s the rub,” as Hamlet says. So, what can you do as primary family caregiver to keep your head on straight? I think you have five basic choices:

ignore other family members and go about your business - the approach suggested by the Millay quote above
fight to get your own way - risking the revival of every single family squabble there ever was
bend and capitulate to keep everyone else happy - perhaps breaking your own heart in the process
work for genuine consensus - knowing that this is difficult, slow and often unappreciated
quit being a caregiver - leaving your elder in a serious bind

All of these choices affect both you and your elder, and I think most caregivers move in and out of all of them. The easiest one to claim is probably consensus-seeking, but I suspect that may be the least common in reality. Family caregiving is high wire act no matter what you do.

A Caregiver’s Holiday Letter

Pete — Thu, 27 Dec 2007 22:12:45 +0000

Looking back on a hypothetical year…

Every year as holiday greeting cards begin to arrive, you probably receive a few annual letters that give you a chance to read about your friends’ and relatives’ lives–the awards and promotions, the fabulous vacations, the fancy new homes and shiny cars, the adulation that school and community heap upon the children.

Maybe when you read these letters you feel your own life is somewhat less glamorous. Maybe you would write a different kind of annual letter–if only you had the time.

Well, fear not, caregivers: CaregivingBlog is here for you. Write your own holiday missive next year by using the letter template I’ve given you below. You can make the little changes you need–a quick addition here, a deletion or substitution there–and be good to go in no time.

Christmas/Hanukkah/Kwanzaa 2008

Dear family and friends,

Holiday greetings to all. I know you’ve been terribly busy, which is probably why Mom and I don’t hear from you much. Still, I thought you’d be interested in the news from our corner of the world as another year draws to a close.

Mom had to stop driving this year, and I had a heck of a time getting the car keys away from her. I hated to do it, but the third fender bender in four months was the last straw. Mom gave me a few days of sulking and the silent treatment but finally came around. On the plus side, the money from the sale of the car helped a lot with medical and prescription costs that Medicare and the so-called supplemental insurance won’t touch. I don’t know what we’ll sell next year, but we’ll worry about that then.

Also, with Mom’s car gone, I can park in the garage again! You may think that’s a small thing, but try not being able to use your own garage for a year or two. See how you feel about it after a year of bringing in groceries in the rain.

Speaking of groceries, you may have heard about Mom’s collapse in the grocery store last spring. At the time I was afraid it was another congestive heart episode. She was in the hospital for a few days before her doctors figured out what happened, and I had kind of a hard time getting them to talk to me at all. It turns out we waited too long to take care of the medical power of attorney, and the doctors now won’t give us a straight answer about whether Mom is mentally competent to sign anything!

The guardianship paperwork is still tied up in the court. I guess the argument now is over who will be named guardian. I thought I was the obvious choice since I take care of Mom all the time, but some members of the family disagree. Anyway, that’s another story.

As near as I can figure, Mom collapsed because of a drug interaction. She takes more than a dozen different medicines every day, and they’ve been prescribed by four different doctors. My goal for next year is to get those doctors talking to each other more!

The pillbox we have lets me organize the drugs so that Mom takes them when she’s supposed to, but it doesn’t help us make sure all the drugs will work together.

I’ve had to stop working full-time because Mom needs more and more attention and care. Money is tight, and I suspect my employer hasn’t offered me everything the law now requires. The elder lawyer helping me straighten out Mom’s money and property doesn’t handle employment law cases, so I guess I’ll soon be working with two lawyers in addition to Mom’s four doctors. I know the money situation will probably work out in the long run, but I’ve been knocked off the career path I thought I was on. Frankly, it doesn’t seem fair.

The year’s insurance woes would make up a separate letter, so I’ll just say that it’s pretty hard to choose the right Medicare Part D package when you have to fit someone whose prescriptions keep changing into the various enrollment periods the plans operate around. I think we have things under control, but that could change abruptly with Mom’s next medical emergency.

If you have some thoughts about how Mom’s insurance should be handled, please let me know before she is back in the hospital again. I know all of you mean well and that you all love Mom, but your criticism after something has gone wrong really doesn’t help either Mom or me very much.

For those of you who attended Mom’s birthday party, I have to say she was having a difficult day. She doesn’t lose her temper like that very often, and I haven’t heard the kind of language she used that night again. I don’t know what set her off, and she doesn’t remember. One of her doctors says the bad language is a sign of dementia. We all have to do our best to remember that she is the same Mom we have always known and loved. It’s just that sometimes she doesn’t sound like it. I know this can be really confusing for the grandchildren, but there isn’t much I can do about it.

Mom loves to have visitors, but sometimes a week or more goes by and she doesn’t see anyone except me and the nurses and health aides who come to the house. If you were to drop by, Mom would be glad to see you. She would love to have company, and I could use some time off myself!

Best wishes for the New Year from Mom and me.

He sprang to his sleigh, to his team gave a whistle…

Pete — Mon, 24 Dec 2007 19:53:11 +0000

And away they all flew like the down of a thistle.
But I heard him exclaim, ‘ere he drove out of sight,
“Happy Christmas to all, and to all a good-night!”

The Snowbound Caregiver

Pete — Mon, 17 Dec 2007 16:37:09 +0000

Sit with me by the homestead hearth
And stretch the hands of memory forth
To warm them at the wood-fire’s blaze!
–John Greenleaf Whittier, Snowbound

We had snow over the weekend. Lots and lots of snow. This has been the snowiest December around here for a long time. We went through the usual storm preparations—gassing up the cars, buying groceries, making sure the snowblower would start. Then we brought my wife’s mother Betty to our house. Just in case the power lines went down; just in case she had a medical emergency; just in case she got lonely when no one could reach her. She will probably stay with us until tomorrow.

The storm turned out to be less severe than predicted. This seems to happen fairly often. The TV weathermen get all excited and find themselves making predictions that mere meteorological facts won’t strictly support. On at least one local station, the excuse may be the pounding “Storm Center” music that plays in the background of every newscast whenever it snows.

We mostly kept the TV turned off. Yesterday, nearly everything was canceled. No church. No afternoon concert. We stayed in the house while it snowed and snowed and snowed.

After dinner we moved to the living room. Holiday music played softly, the fire crackled, the lights on the Christmas tree sparkled, and we talked. It was the sort of evening when family stories get told. Usually the stories are familiar, but every once in while there is something new.

We have a photo of Betty that was taken just after World War II. We showed her the picture and thought she’d have something to say about the time or the place. The story she told, however, was about the dress she was wearing, how it belonged to her sister-in-law but fit her better. As she told the story, she was a young woman again; and the world was a different place.

When the fire burned down, we turned off the Christmas lights and went to bed.