Support, guidance & advice for todays primary carers
Have you ever spent an afternoon engaged in lively, spirited and inspiring conversation with a group of experienced family carers? They really do talk about everything, including how complicated, demanding and—yes—rewarding caring can be.
At a recent carer retreat I attended, most family carers 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 caring 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 caring that we’re pleased to share.
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 family carer?” 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 providing care. 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 of 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 carer 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 caring role, your abilities and how providing care is impacting your life (emotionally, physically and financially).
✔ Embrace change. Change is constant in providing care. 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 family carer.
What worked last week or even this morning may no longer be relevant.
✔ 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.
TRY THIS TO: BE A REAL FRIEND TO A FAMILY CARER
Here are a few suggestions to support the carers in your life
Keep in touch.
Caring can be very lonely and isolating. Make sure to keep in regular contact with your friends that are carers. Don’t think that they are too busy to hear from you or that you are connecting with them at the wrong time. Phoning, emailing or sending a funny card will let them know they are not alone and that there are people who care about them.
Be a good listener.
Sometimes family carers just want to be heard. Listening is a skill that often requires little conversation. Allow carers to vent, babble and let off some steam. Once they have gotten what has been bothering them off their chests or what the current crisis is all about, a final hug is really all that’s required.
Empathy is the capacity to understand or feel what another person is experiencing from within their frame of reference. Take the time to imagine what your friend’s life is like and what their challenges are, and then imagine how you would deal with these same issues. Your comments will become more respectful and kinder.
Surprise your friend.
Family Carers rarely think of themselves. The last thing they expect is a happy surprise. Good surprises can be as simple as a voucher for a local coffee shop, taking over a cooked, ready-to-serve dinner or the gift of a pedicure at the local spa.
Say kind and comforting sentences.
“Thank you for doing all you do.” “I’m coming over on Thursday afternoon to watch your mother while you have a nap.” “I can’t imagine how hard it is for you to watch your dad in so much pain.”
“I wish I were there to give you a big hug.” “How is your loved one doing? How are you doing?”
✗ Let guilt overwhelm you. If you can honestly say that, based on the resources available, you are doing the best you can, then 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 realisation 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 affect not only your health but also your ability to cope.
✗ Try to be perfect. Don’t fuss if some things slide, and don’t feel guilty about letting them.
✗ Ignore the signs of carer 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 caring 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 surefire 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 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 caring are rarely fair.
✗ Think that caring 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 if you’re resentful or frustrated.
✗ Forget the paperwork. Paying bills, filing annual tax returns and insurance claims, and keeping cards/ driving licenses current can be time-consuming, frustrating and expensive if neglected.
✗ Share everything. Be guarded about 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.
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.
AVOID THIS TO: BE A REAL FRIEND TO A FAMILY CARER
Here are a few suggestions to support the carers in your life
Trying to fix the situation.
Supporting your caring friends does not mean that you are responsible for solving their problems. These issues are out of your hands and may actually not be solvable. Be aware that when you try and change situations, you might actually complicate them.
Offering unsolicited advice or criticism.
Don’t think that you add value to a family carer by being critical or saying that you have a better way of doing things. Keep your comments to yourself about how they are managing care. You are not their boss or even their peer. A “know-it-all” attitude might well be met with resistance and even drive a wedge between you and the carer. Instead, praise the carer for something that you genuinely think they are doing well.
Carers live with mountains of guilt. Don’t make it worse by piling on more. Nagging a carer is not only unproductive but highly unsupportive.
Saying unhelpful things.
“You have gained a little weight, and what’s with those bags under your eyes?” “What do you do all day?
You should get out more and take better care of yourself.” Say kind and comforting sentences. “Thank you for doing all you do.” “I’m coming over on Thursday afternoon to watch your mother while you have a nap.” “I can’t image how hard it is for you to watch your dad in so much pain.” “I wish I were there to give you a big hug.”
Being a stranger.
Don’t think that you are bothering a family carer by phoning or dropping in. Such social interactions are absolutely critical to their well-being. If you call at an inconvenient time and are asked to phone back later, don’t take it personally.
Mary Bart is the chair of Caregiving Matters, an Internet-based charity that offers education and support to family carers
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