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Our Turn to Parent offers practical advice on
•deciding when you need to step in and help
•developing the caregiver relationship with your parents
•discussing with the family your parents’ hopes and plans for the future
•adapting the home so that it is safe and comfortable for their evolving needs
•finding appropriate care and help in your community
•choosing the right place for your parent to live should independent living no longer be possible
•navigating the medical system
•organizing your parents’ finances before they become incapacitated
•making clear your parents’ personal care and end-of-life wishes
•caring for yourself
“I have found the last few years to be the most challenging in my life and the most fulfilling…. I have laughed with my mother and cried with my mother, but most of all I have been there for her as she was for me as I was growing up.”–A Caregiver’s Story
We have talked about many of the issues you may encounter in caring for your parents. Now let’s focus on you, the caregiver. You are managing many responsibilities, personally and probably professionally, and balancing the needs of many people. You may wonder where the time you used to have for yourself has gone. It’s not uncommon to experience feelings of anger, guilt, frustration, stress, worry and doubt. You are making important decisions, dealing with family personalities, managing limited amounts of time, manoeuvreing through administrative red tape, taking care of your family and continuing to work. You are also trying to come to terms with the fact that your parents are in need and may be in pain, and may even be coming to the end of their lives.
If you are to be successful as a caregiver in safeguarding your parents’ health, you must look after yourself mentally and physically. Strive for a balance between your role as a caregiver and the other roles in your life. In this chapter we’ll talk about
• how being a caregiver develops your personal skills
• how the stress of caregiving can affect your health
• how good time management skills can help you and your family
• how to balance home, work and caregiving responsibilities
• support options through work and government assistance
• ways you can look after yourself
• the importance of fostering personal support systems
• the role of respite care.
Being the Caregiver
Being the caregiver for your aging parents requires not only your time but also the ability to develop new skills and draw on skills that you may already use in your job or family life. You need to be able to plan ahead, manage your time, and identify and assemble information to accomplish tasks. How much support you receive in your role as caregiver can greatly affect how you feel about the responsibilities. If you’re getting practical assistance and emotional encouragement from family and/or the community, you will perceive your role as caregiver in a more positive way.
Your reasons for having taken on the role also affect the type of caregiver you are and how you will perceive the tasks you perform for your parents. For many of us our feelings of love for our parents and the knowledge that they sacrificed for us gives us a sense of responsibility for our parents. We make the choice, even if unconsciously in the early stages, because of everything we feel our parents have given us throughout our lives. But some adult children do not have a strong relationship with their parents and do the caregiving out of a sense of guilt and obligation. Regardless of your reason for taking on this important task, you need to look after yourself in order to care for your parents.
Dealing with Stress
We encounter varying degrees of stress throughout our lives, and being able to identify it is the start to understanding what we need to do to get through it. Stress is not only mentally draining but can result in physical symptoms as well, manifesting itself as headache, upset stomach, disrupted sleep, anger at others, confusion and anxiety. Stress can also make it harder for you to fight off disease, because it lowers your immune system. And it can drain your energy. Whether the tasks you face are small, like picking up a prescription for your parents during a hectic day, or large, like previewing long-term care facilities, as a caregiver you should learn to identify the signs of stress.
Self-awareness is important. Trust yourself and your abilities. Know yourself and your reactions so that you can recognize when you are reaching your limit. Acknowledge the feelings that you are having as you look after your parents. Don’t put off making decisions as this can increase stress. And don’t put off doing tasks, as they will be on your mind until they are completed. Delegate tasks to others whenever possible but especially when you need to take a break. Use your time management skills to balance the responsibilities of caregiving with the responsibilities of your life.
Good time management skills will help reduce stress and allow you to find some time for yourself.
Realistically, there will be times when your parents will require urgent attention and their needs cannot be dictated by a schedule. Sometimes you will feel there is not enough time in the day to get your parents everything they need. Or you will feel that things seem not to move fast enough. Recognizing that you can’t always control your time can help reduce stress.
TIME MANAGEMENT TIPS
• Keep a calendar that combines your appointments with those of your parents.
• Maintain a to-do list and prioritize items.
• Streamline your finances. Pay bills by automatic withdrawal or use online banking.
• Hold regular meetings of the immediate family to delegate tasks.
• Combine errands to save time.
• Designate a family communication centre, where you keep phone messages, the family calendar and special instructions.
• Be clear with instructions and leave written notes if required.
• Create a list of days and times when extended family are available to help, so that you can schedule tasks for them too.
• Develop effective communication systems within your extended family (e.g., a phone tree, group e-mails).
• Prepare for each day the night before (lay out clothes, gather paperwork, know the day’s schedule).
• Book time for yourself in order to avoid burnout and to give yourself something to look forward to.
Balancing Caregiving and Your Home Life
When you take on the responsibility of being a caregiver for your parents, you do not give up all the other responsibilities in your life. Trying to balance caregiving for aging parents with family and home obligations can be a significant cause of stress. When you overextend yourself trying to manage everything, you feel that you’re not taking care of anything properly. Recognizing that you can’t do it all, and finding other solutions to getting things done will lessen the burden.
Ensuring everyone in the house is getting fed can be a challenge if you have to be with your parents for long periods of time or if you need to be with them during mealtimes. This can cause feelings of guilt because you are not at home caring for your family. Completing caregiving tasks may make it difficult for you to get your own errands, such as grocery shopping, done. Sharing tasks and establishing routines will lessen your responsibilities and reduce your stress.
TIPS FOR MEAL PREPARATION
• Prepare meals for the week in advance and freeze.
• Try commercially prepared frozen meals.
• Find out if there are companies in your area that offer fresh, prepared meals requiring limited cooking time.
• Have a running grocery list posted to which everyone in the household can add items.
• Order groceries online.
• Ask other family members to help with shopping and meal preparation.
• Combine shopping trips with your parents’ errands.
• Have older children do the grocery shopping.
• Encourage kids to help make meals for the family or selves.
• Order take out periodically.
• Talk with partner about taking on more cooking responsibility.
When in crisis
• Have a service such as Meals on Wheels deliver to your home.
• Arrange for children to eat at a friend’s or neighbour’s house.
Maintaining a house is also stressful. You have to learn to let go of some of the expectations that things need to be perfect. Prioritize the housework and decide where to focus your energy. Don’t feel guilty if you decide to hire outside help.
Balancing Caregiving and Work Life
Another difficult aspect of caregiving is trying to keep up with the demands of your job, especially when caregiving in itself seems to be a full-time job! Depending on the stage of care you are at with your parents, you can investigate various workplace options to reduce the pressure. Only you can determine at what point you should have a discussion with your supervisor about your situation. If you’re lucky, you have a work environment that can accommodate your situation so that you don’t need to take extended leave time until your parents require you full time.
You may also want to take the opportunity to let your supervisor know how much information about your circumstances you would like them to share with your co-workers and how much should remain confidential.
An increasing number of companies are recognizing that outside stresses have an impact on an employee’s ability to work productively. As the caregiving community grows, companies should acknowledge the need for change in the workplace to accommodate their employees who are also caregivers to aging parents. Over the past few years, many workplaces have adapted to employees with children; similarly, employers should take into consideration the needs of employees who are caregivers to the elderly.
GETTING HELP AT WORK
Investigate these work options:
• flexible working hours
• job sharing
• working from home
• temporary reduction of your workload
• adjusting work assignments for later deadlines.
When the time comes that your parents require intensive care, you may want to consider taking an extended leave from work. Check with your supervisor or your human resource department to see if you have any benefits available to you through your company. You can also take a compassionate care leave that is offered through the federal government under the Employment Standards Act. It allows you to take a maximum of six weeks off work to provide care for a gravely ill family member. You can get more details and find out how to apply through the Services Canada website (see our Senior and Caregiver Resource Guide for contact information).
Employment standards vary across provinces so check with your provincial government or talk to human resources at your workplace. For example, in Ontario a family medical leave covers up to eight weeks’ job-protected leave for the purpose of attending to a loved one who has become gravely ill or is dying. This leave is available even if you apply for federal compassionate care benefits. Manitoba also offers a family leave of up to eight weeks within a twenty-six-week period.
Another option is to find out whether you’re eligible for any tax deductions due to your caregiver status. If you check the Canada Revenue Agency, you may find that you qualify for income tax benefits as a caregiver.
Caring for the Caregiver
No matter how busy you are, schedule time to look after yourself. Remember to nourish your body and spirit. Don’t disregard the physical toll that caregiving takes on your body. By making time to look after your own physical health you will find the strength to carry on, and will be in a better frame of mind to deal with the challenges.
As caregivers we are often so involved in looking after others that we forget to eat. This is especially true during times of crisis. Try to start the day with a good breakfast. Time goes by quickly, so be conscious of your body when it tells you you’re hungry. Get in the habit of carrying snacks and water with you. Choose healthy foods to help sustain your energy.
Make sure you get enough sleep, which will strengthen your immune system and help you to think clearly in order to make wise decisions. Develop good sleep habits. Try to keep a regular bedtime and develop a relaxing bedtime routine. By identifying this time for yourself, you prepare your body for rest and quiet your mind for sleep.
Exercise helps re-energize your body and makes you feel that you can do more. It can help you prepare for the day, or help you relax in the evening. If you’re not used to exercise, sign up for a class to get you motivated. This will also prompt you to take time for yourself. Check at your workplace to see if they have lunchtime fitness programs or physical fitness reimbursement benefits. Exercise will give you a sense of self-confidence and accomplishment that will carry through to your caregiving.
Find Ways to Relax
Relaxing can help you refocus. It can dissolve feelings of anger and frustration and allow you to come back to a problem with a fresh outlook. It can also provide you with time to decompress. Developing techniques to relax doesn’t necessarily require large amounts of time away from your responsibilities. Relaxing can be as simple as escaping to a bath with a good book, doing breathing exercises, or practising a hobby you enjoy. You can also attend classes to learn relaxation techniques or meditation. And check with your workplace to see if you are covered for therapeutic massages.
Nourish Your Spirit
Just as your body needs nourishing, so do your mind and spirit. Opening your spirit to feelings of hope and renewal allows you to feel replenished. Spend time with family and friends; it will give you the opportunity to focus on something other than your parents. Don’t hold in your feelings – confide in a friend or family member who can provide emotional support. Actively adopt a more positive outlook by reading books with encouraging messages, listening to uplifting music or looking for humour in daily events. Laughter can help you get through the difficult times. Do something you enjoy even if it’s just a couple of minutes in the day. Focus on the present, as it’s easy to start worrying about the future and questioning past decisions.
Caregiving involves many decisions, from small ones such as grocery shopping to larger ones such as where your parents should live. It’s easy to second-guess yourself and to struggle with these decisions. During these times remind yourself that you know your parents better than strangers. If your parents have given you power of attorney, they have faith and trust in your ability to makes decisions for them.
Try not to take the reactions of your parents personally during stressful times, especially if their behaviours are related to an illness, or because they are simply not feeling like themselves. Recognize that your parents’ anger or other negative reactions may be a result of fear and confusion. Have empathy for them.
Looking after your parents over an extended period of time can be physically and emotionally draining. As a caregiver you may feel that your life is no longer your own and be overwhelmed by the responsibility. If you are feeling angry all the time, alone and isolated, and experiencing moments of anxiety and fear, you might be reaching the burnout stage. If these feelings are severe you may want to seek professional counselling, but there are also many small ways in which you can avoid burnout.
WAYS TO AVOID BURNOUT
• Identify signs of stress early, before they become serious (sleep difficulties, headaches, anger and anxiety).
• Don’t suppress your feelings; find a confidant.
• Set realistic goals in order to manage your responsibilities.
• Set aside time for yourself, even if it’s only an hour or so per day.
• Join a caregiver support group to share your feelings, and obtain tips and advice, resources, coping tools and useful contacts.
• Don’t be afraid to talk about your role as caregiver to friends and colleagues.
• Take advantage of respite care, either formal or through family members.
• Do not feel guilty when you can’t do everything.
• If your feelings are severe, talk to a professional counsellor, social worker or psychologist.
As a caregiver you should have a support system in place. You need to know that you have people you can rely on to help you get through the difficult times and decisions. Don’t isolate yourself. Maintain relationships with family and friends, and make an effort to keep up with your network of friends who are not directly involved in the situation. These friends can give you some relief and can listen without judgment. Others more distant from the experience may also provide different perspectives on what you are going through.
There are also various types of support, including one-on-one counselling, group counselling, workshops and seminars. These may be offered through community centres, not-for-profit societies and religious groups in your area. There are also Web-based support networks. These groups discuss topics specifically related to caregiving. You can contact them individually to determine what they offer and which would be best for you.
Arrange Respite Care
Sometimes as a caregiver you need a structured and scheduled break away from your parents. Feelings such as anger and frustration will only increase if you are exhausted and don’t take time to recharge. You will need to acknowledge when you need this relief. Do not feel guilty when taking some time for yourself.
Respite care is provided when someone else takes on the caregiver role so that you can take time away from your parents. This care may be provided by family and friends, or more formally by agencies and facilities. You may need to have someone take on your role temporarily for short time periods, a couple of hours a day, or, if you are going on a vacation, for an extended period.
Various support agencies offer respite care, including the Canadian Red Cross and the Victoria Order of Nurses. These agencies can send someone into your home to give you a break. You can also look into senior day programs for your parents.
Respite care is also offered through retirement homes and long-term care homes, depending on your parents’ required level of care. Your parents can stay for short or extended periods of time. Some homes have rooms that are specifically allocated for respite care, where your parents can stay for a short time while you are away or just to give you a break. There is a fee and the rate is usually different than the regular accommodation rate. The facility can provide further information about the types of care offered and the fees.
When you cannot physically and/or emotionally provide further care for your parents, you may have to turn the caregiving role over to another member of the family. You may even need to allow professionals to step in and take over the responsibilities. If this occurs, you may experience feelings of guilt and sadness, but even if you are no longer the primary caregiver for your parents, there are still opportunities for you to remain involved.
Acknowledgments Senior and Caregiver Resource Guide Endnotes Index