Have you ever spent an afternoon engaged in lively, spirited and inspiring conversation with a group of experienced family caregivers?

By Mary Bart

They really do talk about everything, including how complicated, demanding and yes rewarding caregiving can be.

At a recent caregiver retreat I attended, most caregivers had been caring for a parent, spouse, sibling or friend for more than five years. They eagerly and enthusiastically shared their stories and talked at great length about some of the “dos and don’ts” that they had discovered in their caregiving journeys. The result of much laughter, a few tears and many hugs, here is a fresh-off-the-press summary of our very own top 30 dos and don’ts of caregiving that we’re pleased to share.

DO:
• Take care of your own health. Know your boundaries. Life is all about setting expectations. Let your family know your limits. This will help create respectful conversations and situations. Stay up to date with medical and dental appointments, and keep up with your own treatments and prescription renewals.

• Stay connected with your friends. Even a short phone call, connecting over the internet or meeting for lunch will help you feel engaged and balanced, and will keep things in perspective.

• Exercise as often as you can. Try a regular walk around the block or join an aqua-fitness class at your local pool. Ask yourself this difficult question: “How is my health since becoming a caregiver?” Feed your spirit. Learn and practice stress-reducing techniques such as tai chi, yoga or mindful meditation.

• Laugh and keep your sense of humour. Sometimes the funniest things happen while caregiving. Acknowledge and cherish those moments.

• Keep track of the money. Record both what you spend yourself and all financial transactions that you conduct on behalf your loved one.

• Value your sleep. Always get a good night’s sleep and, if possible, treat yourself to a short break during your day. This will give you the physical and emotional energy you need to get through your day.

• Know the signs of caregiver burnout. If you find yourself having limited time or energy, it might be time to take a step back.

• Be honest and proud. Your work and efforts matter. Don’t be shy to tell people about the valued work that you do. Be truthful with your family about your caregiving role, your abilities and how caregiving is impacting your life (emotionally, physically and financially).

• Embrace change. Change is constant in caregiving. What worked last week or even this morning may no longer be relevant. How well you accept and embrace change is key to staying stress-free and being an effective caregiver.

• Enjoy the good times. Escape when you can and cherish time for yourself. Take lots of pictures to share and keep a journal to remember the things you did together.

• Seek and accept help from others. Going it alone is not sustainable. Having the help of others will keep you sane and decrease your chances of resentment, depression and isolation.

• Limit contact with negative, critical people. If people don’t add value, don’t include them in your day.

• Learn. Get educated about your loved one’s disability or illness so that you know how best to support them today and what to expect in the future.

• Take advantage of community services. Numerous community and private services are available, such as adult-care day programs, meal programs, homecare support and respite care for both you and your loved one.

• Know what you can change and what you cannot change. All we can really change is ourselves and how we react to others and to different situations.

DON’T:
• Let guilt overwhelm you. If you can honestly say that, based on the resources available, you are doing the best you can than your feelings of guilt may decrease. And don’t be afraid to say “no.” It is freeing and gives you more control over your life.

• Lose hope, hide from grief or be angry. Hope gives us a reason to get out of bed. It gives us a purpose. Be realistic but positive in your approach. “Anticipatory grief” is the realization that a part of a loved one is gone forever. Acknowledge it and seek professional help if needed. Don’t let self-pity and resentment control you.

• Stop doing what you love. Keep gardening, reading or going to garage sales. Your favourite activities will take you away to your “happy place.” But don’t overindulge. Eating too much (especially unhealthy foods) or using tobacco, alcohol and other drugs excessively will not only affect your health, but also your ability to cope.

• Try to be perfect. Don’t fuss if some things slide and don’t feel guilty to let them. Pace yourself and prioritize. Managing your responsibilities will allow you to be organized and in control.

• Ignore the signs of caregiver burnout. If you know you are on the verge of burning out or have actually fallen off the cliff then you need to stop, reassess what’s happening and change what’s not working.

• “Wing it.” Successful caregiving means being organized, planning and being prepared for doctor’s appointments and meetings at the bank, and creating a dynamic schedule that suits both you and your loved one. “Winging it” is a sure-fire way to fail.

• Think you have control over everything and everyone. Although you will be the decision-maker in many situations, you can’t control the health of your loved one, whether your family will offer support or the expense of care. Being realistic will help you stay grounded.

• Expect people to read your mind. Being able to clearly communicate your issues and needs will help others better understand and respond.

• Stop being an advocate. Defend your loved one’s rights and needs. Challenge what seems wrong, does not make sense or will not work. You need to your loved one’s voice.

• Make your care recipient feel guilty. Regardless of how much time and energy you give to your loved one, don’t play the “guilt game” with them.

• Expect your family to pitch in and help. Just because you need and want their help, doesn’t mean you will get it. Life and caregiving are rarely fair.

• Think that caregiving responsibilities are equally shared within a family. Assume that one person will do the most, while others will give what they are able.

• Abuse your loved one. Abuse can be physical, emotional and financial. Know the signs of abuse and how to control your anger. Seek professional help and if you’re resentful or frustrated.

• Forget the paperwork. Paying bills, filing annual CRA returns and insurance claims, and keeping health cards/driving licenses current can be time-consuming, frustrating and expensive if neglected.

• Share everything. Be guarded with what you share with your friends. Understand that most people don’t want to hear or know it all. Giving too much information is not a good thing.

Mary Bart is the chair of Caregiving Matters, an Internet-based charity that offers education and support to family caregivers