Who Will Care for the Caregiver?
For most people, caring for their loved one is only the logical thing to do. There is no second thought when it comes to providing that extra care that they need. Many think to themselves "why wouldn't I do it?"
Usually, it begins with one or two things. Quick trips to the grocery store or that necessary driver for doctor's appointments. These are such simple tasks that can easily be added to the schedule. But the tasks multiply. As the task list grows, the caregiver just adds them to the daily routine. Too soon the caregiver starts structuring their schedule around the caregiving.
As caregivers fill their “free” time with chores and other tasks for their loved one, they start to separate from everything they used to do: go out with friends, exercise, maintain memberships to clubs and other activities. They become isolated from everyone else because their time is spent caring for this other person. Feelings of being trapped in the situation are not uncommon, and that can lead to depression.
Caregiving not only affects the caregiver mental and physically, many times it also greatly affects them financially. Since most caregiving services are not covered under health insurance, caregivers are forced to take care of family members themselves, sometimes taking a lesser position so they are available for their loved one, or taking leaves of absences from their work or quitting their jobs altogether. This adds to their stress levels because it sometimes infringes on their ability to adequately pay their own bills.
And, because their attention is constantly on their charge, they neglect their own mental and physical health. Physiological evidence has shown that caregivers have a higher elevation of a chemical linked to chronic inflammation, which increases their risk of arthritis, Cancer, diabetes, heart disease, and other diseases.
When Diane cared for her husband, Emil, after his by-pass surgery, she ignored her own growing symptoms of illness. Emil had recovered well and was almost back to full health. So, he was willing and able to take over as caregiver when Diane was diagnosed with Lung Cancer. As he drove Diane to her many treatments and specialist appointments, Emil failed to keep his follow-up doctor appointments. Since he wasn't properly taking care of his health, his condition became serious again.
This scenario is repeated in thousands of households every year by caregivers and their charges. Sometimes it is the spouse neglecting their health; sometimes it is a middle-aged child who is caring for their parent. So, who will care for the caregiver?
Asking for Help:
A common question is “why do caregivers not ask for help?” Sometimes, the caregiver is so busy taking care of their loved one that it does not occur to them that they should ask for help. Some do not know how to ask for help or where they could turn for help.
There are several agencies in the United States that were developed to do just that: provide desperately needed support to caregivers. They not only assist in arranging respite for the care recipient, they also organize support groups for the caregiver to attend meetings and discuss their feelings and be reminded that they, too, need to care for themselves.
Some of the organizations available to assist caregivers are:
• The National Alliance for Caregiving, 301-718-8444, www.caregiving.org
• National Family Caregivers Association, 1-800-896-3650, www.thefamilycaregiver.org
• Local Groups, such as senior centers, Meals on Wheels, and community transportation services can help ease your daily chores list by providing some services you would otherwise have to do.
• There are also many groups on the Internet who have regular chat sessions scheduled, message boards and websites that can be a great help to caregivers so they understand they are not alone.
Beware of Burnout:
Even with occasional help, a long-term caregiver is prone to burnout. Feelings of being overwhelmed by the situation and feelings of frustration can send the caregiver into a deep depression. Once burnout happens, it is no longer safe for either party to continue the caregiving situation as it presently stands. However, burnout can be prevented if the caregiver follows some simple steps while they are caring for their loved one.
- Do not do this alone - While caregiving usually starts out gradually, as noted above, once it starts to become a regular occurrence, you should seek the assistance of others. Talk to family and friends to see what they can and will do to assist in caring for the loved one. If further assistance is needed, look for agencies and groups in your area that will provide respite or other services that will help remove some of the work from your schedule.
- Learn about the illness - This is an important part of caregiving. If you understand the illness your loved one has, then you will be properly prepared to care for them and watch for danger signs while they are under your care. Knowing you are prepared removes much of the stress and frustration you would normally feel if you were dealing with an unexpected complication from the illness.
- Everyone has limits, know yours - Caregivers have a tendency to give more than 100% of their time and energy to the person for whom they are caring. You should be realistic with yourself and the doctors and other people involved. Set clearly defined limits and make sure everyone knows what those limits are.
- Take care of yourself - Do not neglect your own health by putting off doctor appointments or other activities to be a caregiver. Most likely you are feeding your charge a well-balanced meal, so why not enjoy that meal with them? Take time out to exercise, even if you are using a pre-recorded exercise routine or taking a short walk every day. Remember to pamper yourself and find some time to enjoy something you like each week.
- Feelings are okay to have - Caregiving is a difficult job, and you are likely to feel many emotions, including fear, grief, helplessness, then anger and resentment, followed by guilt for feeling these emotions. You are allowed to feel all of these things, and you will. Sometimes keeping a journal is a good way to let your emotions flow and avoiding bottling them up. As long as it does not hurt the mental or physical well being of the care recipient, let yourself feel.
- Talk to others - Keeping your emotions and thoughts bottled up inside does not help your overall health. Talk with a friend or family member about what is going on, what you are feeling, and what you need. There are also support groups that can help you work through your emotions and provide an outlet for you. If your emotions are so overwhelming that you are having difficulty functioning, it may be time to consult a counselor or therapist.
Books to Help You:
There are many more resources available to caregivers today than there were even 20 years ago. Many of them can be found online or in book stores. Some good titles to start with are:
- The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent (Guilford, 2006).
- Share The Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, (Revised and Updated) (Fireside, 2004)
- Caring for Your Parents: The Complete Family Guide (AARP) (Sterling, 2005)
- How to Care for Aging Parents
Tips to Follow:
- Caregiving is a full-time job and you need regular breaks. Don't forget to pamper yourself - you deserve it.
- Depression can hit you when you least expect it. Keep a watchful eye for the signs and seek professional help when you need it.
- People offer help, but rarely know what they can do. Take their offer and let them know what they can do to assist you.
- Learn about your loved one’s illness, and learn how to communicate with the doctors caring for your loved one.
- Caring and doing are two different things. There is a world of technologies and ideas that allow your loved one to have their own independence.
- Your instincts are there for a reason. Trust them.
- Caregivers use their back to do a lot of pushing, pulling, and lifting. Take good care of your back.
- Grieving your losses is okay, but don't forget that you can dream new dreams.
- You are not alone. There are other caregivers who understand what you are going through.
- You have rights as a citizen, and you have rights as a caregiver. Don't give either up.
need to be very careful that they are looking after themselves just as diligently as they look after their loved ones. Unless they are careful, they could face many of the same health problems they are helping others cope with. There are many reasons why people become caregivers, and they are an important part of our society. Taking care of others should not impede a caregiver’s health and well being. Take care, Caregivers.