Caring for the Caregiver

Summary

This section discusses the importance of caregivers taking time to take care of themselves so that they are better equipped to handle the demands of ongoing caregiving.

Overview

Often we become caregivers very suddenly and without warning - a husband is diagnosed with cancer, a child is born with Down Syndrome, a parent has a stroke. At other times, caregiving creeps up on us as parents age or children develop symptoms of illness or disability. Regardless of how we become a caregiver, it is usually a physically and emotionally draining experience. Amidst the reorientation of our schedules, the search for resources, the fears about the future, and the challenges of the day-to-day, we seldom take the time to devise a plan that takes into account the health and well being of all concerned - including ourselves. We just go on automatic pilot and do, and do, and do.

Somewhere along the line however, it is critical that we do stop, take a breath, and try to gain some control over the situation, rather than letting the situation control us. Obviously, we cannot control everything that happens to us, or to our loved ones. But we can learn to make active choices about how we are going to deal with the circumstances of our lives.

Principle # 1: Take Charge

We can choose to martyr ourselves in the interests of the loved one for whom we are caring, or we can set limits on what we as individuals can and cannot do without causing irrevocable damage to our own health or the other relationships in our lives. Caregiving is complicated. It is forever changing, and it usually involves a variety of people, not just the caregiver and the care receiver. Recognizing this is critical if we are going to give ourselves permission to actively make choices and not always be on the receiving side of the consequences.

We need to know what our own limits are and take into account the consequences of our actions. The lifting we could easily do five years ago may be having dire consequences for our back today. When we first focused our attention on our newborn daughter with disabilities, it didn't seem to impact the kids, but now they are feeling the loss of our attention and getting into trouble at school to prove it.

Caregiving is a relationship between many people. Making proactive choices means you recognize that you are one of those people. Choosing what is in your own interests isn't always selfish - it is often the most important thing you can do for all concerned.

Principle # 2: Be Good to Yourself

Caregiving so often keeps us off balance. It is easy to get lost in its physical and psychological maelstrom-the sadness, the frustration, the stress and strain on your body and your mind, the financial worries, the emotional pain-you know them well. It stands to reason that we must step out of the frame on a regular basis, and take a break and/or cultivate the other parts of yourself, to learn to give to yourself in addition to giving to others.

Each of us is different, and we all need to find our own way of keeping balance in our lives and learning what rejuvenates us so that we can turn to those things for energy, solace, and validation. It might be spending some time away at church that allows you to separate yourself from caregiving for a moment and find some peace. Perhaps a morning jog provides a surge of energy and a sense of well being. It might be a part-time job that not only helps relieve some of the financial stresses, but also provides you with personal satisfaction. It might be as simple as a 15-minute bubble bath you allow yourself every Friday evening as a way to calm yourself down and welcome the weekend.

It is not an easy thing to do, especially when you're racing around and perhaps living from crisis to crisis. It is not easy because taking personal time often makes caregivers feel guilty about taking time away from fulfilling their caregiving and other obligations.

How do you create a balance between caring for yourself and caring for others? You do it by recognizing that your own good health is the very best present you can give your loved one. Your own continuing ability to stay healthy is vital to your continuing ability to be a competent family caregiver.

Believe that you need to have a few minutes of personal space, at least several times a week. If you can take more than that, it is a bonus from which you will benefit, but all of us, even the busiest of caregivers can find 10 or 15 minutes several times a week to care for themselves. The trick is to start and to focus those few minutes on you, your interests, and your dreams.

The idea is to replenish the essential part of yourself that you've been slowly losing to caregiving. It doesn?t matter if you take walks, practice yoga, paint, pray, bake, or read; do what helps you feel rejuvenated and ready to face the challenges you have.

Principle # 3: Seek, Accept and At Times Demand Help

Family caregivers often seek relationships with other caregivers, knowing they can provide emotional and sometimes practical support for each other. However, what may be needed most is help with some of your responsibilities. Providing help is something that family caregivers know a great deal about. It is what we do every day. But if you are like most family caregivers, it is not often that someone offers you a helping hand.

How do you get the help you need, and where do you find it? Just as you have to reach out to get emotional support and advice and be open to receiving it, you also need to reach out and ask for help, and know how to accept it when it is offered.

The first step in getting help is recognizing that caregiving is far too big a task to undertake alone. This is true for all caregivers, but particularly for those who are assisting loved ones with multiple needs or round-the-clock care.

Some people have a hard time admitting they need help. They feel guilty even thinking they can't juggle everything themselves, or they believe no one else can do their job as well as they can. They forget that the caregiving, like all jobs, is made up of lots of individual tasks, not all of which are of the same importance, or require the same skills.

Many people think asking for help is a sign of weakness, but it is actually a sign of strength because it is an acknowledgement of the difficulty of the situation at hand. It is a sign of strength because it requires putting pride aside and acting in the best interest of your loved one and yourself, which often isn't an easy thing to do.

Principle # 4: Become an Advocate

At some point, we come to realize it is imperative that we become an advocate for the loved one we are caring for as well as for ourselves as caregivers. You will recognize that you are a family caregiver in addition to being a husband or wife, a mother or dad, a daughter or son, a sister, brother, friend, niece, etc. It is important to acknowledge your role as a family caregiver because that bonds you with the more than 50 million other family caregivers in America who share many of the same worries and concerns that you have. Considering that you are part of a group, a very large group, helps provide the strength and the conviction that you often need to become a vocal advocate for you and the one you give care to - to Stand Up and Be Counted.

Ten Tips for Family Caregivers

The National Family Caregivers Association suggests 10 tips on how to better cope with caregiving:

  1. Choose to take charge of your life, and don't let your loved one's illness or disability always take center stage.
  2. Remember to be good to yourself. Love, honor and value yourself. You're doing a very hard job and you deserve some quality time, just for you.
  3. Watch out for signs of depression, and don't delay in getting professional help when you need it.
  4. When people offer to help, accept the offer and suggest specific things that they can do.
  5. Educate yourself about your loved one's condition. Information is empowering.
  6. There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.
  7. Trust your instincts. Most of the time they'll lead you in the right direction.
  8. Grieve for your losses, and then allow yourself to dream new dreams.
  9. Stand up for your rights as a caregiver and a citizen.
  10. Seek support from other caregivers. There is great strength in knowing you are not alone.

Resources:

  • Salt Lake County Aging Services Caregiving & Caregiver Support: 801-468-2460
    http://www.slcoagingservices.org/html/caregive.html
  • Taking Care of You
    http://www.slcoagingservices.org/pdf/powerfultools.pdf
  • American Association of Retired Persons Family Caregiving
    http://www.aarp.org/learntech/family_care/Articles/a2003-04-30-agingparents2.html
  • Caregiving in the US (Research Report)
    http://www.aarp.org/research/reference/publicopinions/aresearch-import-853.html
  • Survey Reveals How Caregivers Deal with Stress
    http://www.aarp.org/bulletin/yourlife/a2004-05-12-caregiving_survey.html
  • The Arc of the United States The Arc's Family Book (1993)
    http://www.thearc.org/publications/familybook.pdf
  • Family Caregiving 101
    http://www.familycaregiving101.org/about/
  • A caregivers Bill of Rights by Mary Etta Tubbs
    http://arcutah.org/news/disupdates/carebill

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