Increasing numbers of Canadians and Americans find themselves in caregiving roles. The challenges of balancing the needs of the individual in care and the caregiver are often complex and require gathering information and making informed decisions.
Many boomers find themselves making decisions about the well-being of parents who are no longer able to care for themselves. Illness can even strike boomers and either on a temporary or ongoing basis, home care or assistance may be required. These are difficult challenges. Not only is it necessary to look at the well-being of the person needing care; caregiver well-being must also be considered.
A startling number of retirees are caring for their parents. Statistics Canada (1996) reports that 2.1 million Canadians are caring for someone suffering from a long-term illness.
Statistics show in the US, the situation is similar. According to the Family Caregivers Association: More than one quarter (26.6%) of the adult population has provided care for a chronically ill, disabled or aged family member or friend during the past year. Caregiving is no longer predominantly a women’s issue. Men now make up 44% of the caregiving population. Sixty-one percent (61%) of family caregivers providing at least 21 hours of care a week have suffered from depression.
Chronic Care in America (Institute for Health & Aging, Univ. of CA/SF for the Robert Wood Johnson Foundation) 1996 indicates “virtually one half of the US population has a chronic condition. Of these, 41 million were limited in their daily activities.” The Journal of the American Medical Association, December 15, 1999, Vol. 282, No. 23. Reports, “elderly caregivers with a history of chronic illness themselves who are experiencing caregiving related stress have a 63% higher mortality rate than their non-caregiving peers”. US General Accounting Office (GAO/HEHS 95-26, “Long-Term Care: Diverse, Growing Population Includes Millions of Americans of All Ages”) 1994 indicates “approximately 80% of home care services are provided by family caregivers”.
Caregiver well-being can only be maintained if the caregiver manages to find a balance between the caregiving role and other parts of their lives. It is important to maintain personal time away from the caregiving role. Use this time to restore oneself emotionally and physically. Choosing to go swimming, to a spa, for a hot stone massage, or out for coffee with supportive and fun loving friends who will take your focus off the day-to-day challenges of your role are important to your well-being. It is not selfish. You have needs too, and if you deplete yourself you will not have the ability to keep on caregiving.
Learn to pick and choose what you do and don’t do. If the needs of the patient are more medical than you have the ability to provide, perhaps a home visiting nurse can service these needs – often this may be covered by extended health insurance or available through your government or non-profit funded organizations. If there are some hours where it is only necessary to have someone present, perhaps these are hours where you can hire someone to stay with the patient while you take time out. Choose specific times to focus on quality time spent building memories and a relationship with the loved one who is in need of care. It is easy to be there all the time without really spending quality time
Bryce had five years left to retirement when his parents were in need of an increasing amount of help. He felt stretched to the max between his own commitments to his wife, three children and work, and the additional responsibilities of caring for his parents was a real burden. One of the things that plagued him was that his father no longer drove and his parents were happiest when they could spend two or three weeks at a time at their summer cottage, only accessible by ferry. They could not get to their cottage without driving and moreover, Bryce worried about his parents being more or less isolated without a car, in case one of them needed to see a doctor in the town 10 miles away. Yet, to deny them this opportunity seemed unreasonable; one more piece of their independence was being threatened and none of the family was free to take the required amount of time off work.
As a coach, I suggested they look to see if they can find a younger retired woman, perhaps with a background in nursing who could drive them there and who would enjoy the time on the island. Once we clarified that the needs of the parents were mainly safety issues around cooking, transportation, and shopping, it became clear that this was a great solution. Bryce had not thought of this and it was easy for him to find the right person within their own circle of friends. He arranged to hire a lady who had divorced when her children were teenagers, and although she was retired her budget was limited and her opportunity to travel or get away was limited. To her this was a great opportunity to visit a great retreat location, at no expense. She now has accompanied the elderly couple three times in the past two years and looks forward to each trip.
Assess the needs of the person needing care. Full-time care or live-in nursing homes may not be the only or right option. There are many different types of health care services available. Some long term care facilities offer Respite Care for a few days at a time to give the caregiver an opportunity to go on vacation, or needs a substitute while recovering from surgery or whatever. Some facilities offer daycare on a daily basis or once a week as well.
Perhaps the delivery and maintenance of home medical equipment is all that is needed. Many medical equipment companies offer instructions to family members on how to use the equipment. The next level of assistance is usually in-home part-time nursing, medical, social work, and speech, physical and occupational therapy services.
Additionally, non-medical support services such as assistance with activities such as bathing and light housekeeping is available through home care companies. Pharmaceutical services provide medications and check the patient’s response to medications. If increased levels of care are required, nursing homes or health care facilities are usually the next option. Hospice programs provide support for terminally ill patients and their families.
If it becomes necessary to choose Home Care or Hospice Services, know what to ask for and seek out the organizations that license these services in your area. You want to be sure you are getting qualified and ethical service providers.
Do the necessary research to match the service to the needs of the individual. Take a look at how long the home care or hospice has been in business and whether there is funding available to assist with the costs.
Ask about the training requirements of their staff and how the company is managed.
- Are they licensed and bonded?
- Do they have a plan in case of emergencies, such as power failures, natural disasters, or internal outbreaks of contagious illnesses?
Your peace of mind will depend on knowing you have made the right choice. Often the cost is only a small factor in making the right decision. It is never easy to make these decisions and even harder if the person requiring the services is resistant.
Unfortunately, the ability to make these decisions while balancing emotions and logic is the only way through what can be a difficult time for everyone. Most people find once the decision has been made and a little time passes to allow for the transition, everyone is happier.