Support for the family caregiver | CaringWise

Death causes humans to mourn. And illness brings with it a million deaths, a million tiny losses both visible and invisible, long before the final death. You have to quit taking long walks after dinner. The beloved deep-throated laugh has been replaced by a rasp. That long-anticipated trip back to the homeland will never happen.

Of course you are grieving. For the person you love. For yourself. And for your life together.

And with grief comes the whole range of stages, from denial to bargaining. Yes, acceptance is a stage, too, but it takes awhile to get there. Moreover, since the person is still alive, you may also struggle with guilt; is it really appropriate to mourn someone who is alive?


Shouldn’t you be celebrating your time together?

Yes. And yes. But like so many things, that is often easier said than done. So recognize your grief, accept it too, but try not to let it take over your life.

Three things you can do about grief

• Know that you are not alone. In a University of Indianapolis study of Alzheimer’s caregivers, 80% said their biggest barrier to caregiving was the loss of the person they used to know.
• Understand that this is real. And it’s normal. So don’t try to shrug it off.
• Take care of yourself. Grief puts you at risk for depression, which in turn may put you at higher risk for dementia. So get a support network. Take a break.  Breathe.

You are juggling 4,569 metaphoric balls. You are keenly aware of how many of them you are dropping. You haven’t slept in weeks. And so the mere suggestion that you might be able to improve any aspect of your caregiving—even if that suggestion is something as innocuous as getting some help—tends to trigger a stalwart defense mechanism.

The message you signal: “You don’t know what you are talking about. I’ve got it all under control. Go away.”

Unsolicited advice is rarely welcome. And that goes double in a caregiving situation when the suggestion is coming from someone who doesn’t appear to be shouldering their fair share of the work.  But it may, in fact, be useful. So don’t dismiss it out of hand.

Three tricks to counter defensiveness:

• Be aware. Listen to yourself. Are you busy justifying your actions—maybe even before anyone has offered an alternative?
• Breathe. (This is always good advice). Remember, no one is suggesting you are a bad person; they are suggesting things that may make your life or the life of your care recipient easier.
• Put it in the third person. You know your situation best. But you may be too close to the action to judge some things accurately—that whole "not-seeing-the-forest-for-the-trees" thing. Try thinking about a friend in a comperable situation.  If someone gave them similar advice, do you think they should take it?
• Give yourself a break. Above all, recognize that you are doing the best you can, and that your best is all anyone can ask. Even you.

Being a caregiver interferes with every aspect of your so-called normal life. And just like toddlers and teenagers who rail against their freedoms being curtailed, we resent this intrusion. Oh, maybe not at first, especially in a crisis-caregiving situation. But soon enough, when the adrenaline has worn off and all we can see is an endless hijacking of our lives.

Who do we resent? Other family members who aren’t pulling their fair share. Friends whose biggest worry is whether to get the red dress or the green one. And, worst of all, the person we love fiercely who is causing so much turmoil.

But that’s kind of tough to admit. So we bottle it up and go back to screaming at the siblings. The trouble is, resentment won’t stay bottled up very long. It festers. And then one day it is full-blown anger. Our advice: Tackle it before you get to that stage.

Three ways to cope with resentment

• Let it out. To your trusted best friend. In the pages of a private journal. In an anonymous post in a caregiving blog (other readers will understand). In a caregiving support group. 
• Take a step back. When you start feeling resentment, ask yourself if it is warranted. Could your sibling do more? If so, ask for something specific. Have they stranded you for the fourth time running? Maybe they have never been reliable. And before you blow up, think hard about whether the situation is worth wrecking your relationship over.
• Forgive yourself. Know that feeling resentment—like all these emotions—does not make you a bad person.

Fear comes in many flavors: What is going to happen to Mom? How can I handle it all? Will I end up this way, too? It’s natural. And it can consume your days and nights and every thought. You turn things over and over, like a sore that you just can’t stop yourself from touching.

The trouble is, that fear only makes things worse. You accomplish nothing for your loved one. And you give yourself headaches and stomach-aches, sleepless nights and probably poor dietary habits. Everyone loses.

It is important to acknowledge your fear—and to manage it, before it manages you.

Two tips for handling fear.

• Stare fear in the eye. What is the very worst thing that could happen? How would you handle it? What are your choices? Have other people gone through something similar? Are there some proactive steps you can take? If you know how you will deal with the worst case situation, you can be comfortable dealing with anything short of that.
• Figure out what you can control, and let the rest go. Easier written than done, I know. But there is no use lying awake at night fretting over things you have no way to impact. Don’t borrow trouble; you have enough already.

Caregiving, by its very nature, is isolating. It takes you out of your normal routine, your normal social activities, your normal exercise circuit, often even away from your normal work. Instead, you spend increasing amounts of quality time with your loved one—and in the waiting rooms of doctors everywhere.

But the loneliness isn’t just physical. When you do talk to your friends, their concerns often seem quite irrelevant; you just can’t get worked up over what to serve at the church social or which dress Polly’s daughter wants to wear to the prom. So you start avoiding people, either consciously or unconsciously.

Your world can shrink in an instant.

And that shrinkage can cause fundamental changes in you. Loneliness is stressful. It often leads to alcohol dependence and other self-destructive behaviors. And it becomes self-reinforcing. So please be aware of this trap, and try to stave it off before it starts.

Three keys for fighting loneliness

·      Find someone to talk to. Someone who understands. Caregiver support groups in person—or even online—can connect you to people who do know what you are going through. They may even have good suggestions for you.

·      Get respite help. A relative. A friend. A paid caregiver. Give yourself at least a lunch or dinner or shot at exercise every week.

·      Stay connected. If you can’t go out, your true friends will be happy to come over. No need to fuss; they are there for you, not the food. They might even be happy to bring dinner, then stay to eat it with you.

I don't know a single caregiver who isn’t drowning in guilt. They forgot to do something. They remembered, but couldn't get to it. They got frustrated and said the wrong thing. They kept a lid on their emotions and didn’t say anything. They’re doing a great job with the caregiving, but have totally neglected their work, their family, their friends (err…and themselves?). They are letting some of the caregiving fall to others—PAID people!! Caring for Mom!—when they should be doing it all themselves.

Really, the sources for guilt are almost endless.

I am here to suggest strongly that you quit beating yourself up. Guilt is, at best, an entirely wasted emotion. It doesn’t help the person or people you are feeling guilty about. And it might, literally, be killing you.

Three Steps To Triage Guilt

1.     Every time you start feeling guilty, ask yourself if, realistically, you could be doing better. If the answer is “no” you are off the hook; nothing to feel guilty about. If the answer is “yes,” proceed to step 2.
2.     Why aren’t you doing more/better/differently? If it is because you have done some internal prioritization and the cost of perfection—in time, in money, in other sacrifice—is too high, you are off the hook; nothing to feel guilty about. If the answer is that you are a self-centered lazy slob, proceed to step 3. Please note that very few people are actually in this second category.
3.     Change whatever you are feeling guilty about.

In the end, you need to realize that in fact, you cannot be all things to all people. And that’s OK. You can let some things go; they’ll be there waiting. You can lower your standards to something achievable. You can ask for—and accept—help. 

You can simply realize that doing your best is enough.

Do you fume at stop lights? Does the salesgirl’s insincere ‘Have a nice day!’ infuriate you? Do you scream at the dog simply for existing?

Could you be experiencing caregiver anger?

Really, anger is a reasonable reaction on your part. It’s a stage of grief, and grief is certainly an emotion you are experiencing. Moreover, your life has been hijacked, you may be shouldering more than your fair share of the caregiving, you are scared—and it is entirely possible that the person you have just turned your life inside out for is busy yelling at you! Layer in sleepless nights and the frustration of having lost control of just about everything and you are well within your rights.

But no matter how justified your anger may be, you also know that you can’t just go around harrumphing at the world. Nor can you bottle it up; you’ll explode. Plus you will end up with headaches, high blood pressure, heart disease, gastrointestinal issues—and some serious relationship problems, to boot. Better to diffuse it now.

Four Ways to Diffuse Anger

• Use the power for good. Throw all that energy into exercise; your health will improve and so will your waist line. Pour it into gardening or cleaning—any activity that requires hard manual labor. Physical work not your thing? Channel your energy into research; you may discover a useful clinical trial.
• Expend your anger peacefully. From a therapist to a support group to a journal, simply recognizing and expressing your feelings will help alleviate them.
• Minimize environmental angst. Now is the time to resign from the book club that bores you, to replace the toaster that keeps sticking, to quit wearing that itchy sweater—essentially to rid your life of all petty irritants. That may also include setting limits on how much fetching and carrying you are willing to do for your care recipient. Even when you love them to pieces, it’s all right to say ‘no' every now and then.
• Let it go. Ultimately, the only thing you can control is yourself. Breathe out your anger. Be conscious of the calm. Celebrate one small victory at a time.

They say good help is hard to find—and family after family illustrate that beautifully when caregiving needs arise.

If you are the primary caregiver, don’t assume that it has to be all you, all the time. But also don’t assume you are going to get help unless you ask. Very specifically.

Why? It depends. Sometimes your family sees you as the strong person and forget you need a rest. Sometimes they see it as your “job,” letting themselves off the hook. Sometimes they don't want to “impose”—and sometimes they are just oblivious. But this is particularly true if you never look like you need help, or demure when someone offers. Once they have offered for awhile, they forget. So right from the start, try to divide up chores, or build in respite for yourself.

Ask yourself what you really want. If it’s hands-on help:

o   Be sure that when someone asks, “What can I do?” you have a concrete suggestion. Keep a checklist on the refrigerator (or better yet, online) where everyone can see it.

o   Assign family members the roles they do well—or at least the roles they will do (it’s not a help if it never happens). Offload the groceries, the lawn care, the laundry., the book-keeping.

o   If they live far away (or feel they are too busy) ask for a monetary contribution. A few hours of respite care from a home health agency or senior care facility can go a long way towards maintaining your sanity.

It could be, however, that you have all that under control, and really you just want a little appreciation. Then say so. But in a nice way, and before you start to boil over.  A good start is a weekly phone call where your job is to vent and theirs is to tell you what a great job you’re doing.

A final note: Don’t waste time and energy worrying about the people who aren’t being useful. You need all your energy for yourself. 

In many—if not most—caregiving situations there is a team involved. Siblings, spouses, close friends, the third cousin whose neighbor had exactly the same thing. With luck, this is great. Two heads are better than one; many hands make light work, etc., etc., etc. Often it is less ideal, with a lot of conflicting opinions, but very little action. If you are the one shouldering the bulk of the responsibility, this can really add to your stress. What to do?

First: Consider the source: Not just who is doing the criticizing, but why. Is it out of guilt because they can’t or won’t do what you are doing? A desire for self-aggrandizement? A deeply ingrained power-play mechanism (is this someone who always needs to be calling the shots)?  Understanding the motivations behind the comments can help put them in perspective.

Second: Consider the content:  What is particularly troubling? Once you are able to step away from the emotional component, you can figure out the best strategy for dealing with it.

·      Is there a constant litany of things you should be doing, with no actual offer to help? Then play dumb, and act like the latest suggestion was an offer to step in. “Take her to the beauty parlor? Great idea. What time can you pick Mom up Tuesday?”
·      Does your older brother make you feel like you’re five and a half?  Take a minute to think about everything that you are doing right. Really. Make a list.  Run through it. Then smile and keep moving.
·      Is it simply that the criticism is so relentless? Copy teenagers everywhere and just tune it out.
·      Do you have a sneaking sense that there may be a grain of truth in the criticism? Even the girl who cried wolf was right eventually, so don’t automatically dismiss everything  the nosey parker says.

The bottom line: Step back as far as possible and try to gauge realistically how much truth there is in what they are saying. And then act accordingly.

Recently, a caregiver commented to me, “The hard part about caregiving is you lose so much of yourself—your time, your hobbies, your friends—that pretty soon you turn into a hermit because it is just easier.”

Yes, finding balance is tough. And yes, becoming a hermit may be easier in the short term. But it can be devastating in the long-term—to your psyche, your self-esteem, and most importantly, your health.

So put some time for yourself on the schedule.  And I mean schedule. On the calendar and considered just as important as the other things on it.

o   Schedule breaks. Ten minutes for a cup of coffee. Or the crossword. Or a shower.

o   Schedule exercise. Whether a trip to the gym, time with a workout tape, or a walk with a friend (double benefit) make sure you keep moving.

o   Schedule “self-care” appointments—the hair-dresser, the dentist, the annual check-up. The easiest thing is to plan these for yourself when you schedule them for your care recipient. Then you will be sure to go.

o   Schedule time to talk. Lean on your old friends, people who can lend an ear—and who can remind you of your non-caregiving self. You might also join a support group—you will feel less isolated and may even get some good tips.

And one more thing that makes it possible to keep all those schedules: Always have a Plan B and a Plan C. That makes it easier to roll with the punches.