This month we’ve been featuring Brenda Novak and her annual On-line Auction to benefit Diabetes Research. The reason she chooses this cause is because her son has Juvenile Diabetes. More that 50 million Americans are caring for a spouse, parent, or relative with a serious illness. Particularly difficult challenges I’ve noticed with the aging boomer population is when a couple is nearing or at retirement age and one or both of them are experiencing health problems, and / or they have elderly parents that require assistance. Many times because of the economy or other circumstances their adult children have moved back home.
When your child has a developmental or cognitive disability this adds an additional strain. Now you are not only concerned about caring for them until they become an adult but also through their entire life. Yes, all parents love and worry about their children and grandchildren, but it is not usual to have to literally plan out and carry the financial, physical, emotional, mental, and spiritual burden throughout their entire lives. Parents special needs individuals realize they will probably not live long enough to shelter and provide for their beloved child. I’ve witnessed aging parents barely coping with their own illnesses, and lingering on because they can’t let go of the the responsibility of the child they’ve cared for for over forty to fifty years.
Author and journalist Gail Sheehy identifies eight crucial stages of caregiving in her book Passages in Caregiving: Turning Chaos into Confidnece. Diane Rehm interviewed Gail Sheehey on NPR. She draws on her experience caring for her husband, the founder and editor of New York Magazine, Clay Felker. Even though her advice is focused on caring for the adults and elderly, it still applies to the caregiver that also has younger relatives and children that require their assistance.
Seeking out qualified help is essential to survival in this kind of financial, mental, emotional, physical and spiritual storm.
Below is a list of links that may be helpful to the reader or someone they know. The important part to remember is to take care of yourself – the caregiver. When you fail to do that there is no one left to care for the others and you become the burden.
National Association of Professional Geriatric Care Managers Program of All Inclusive Care for the Elderly (PACE) socialworkers.org
National Association for Home Care & Hospice
Question: If a parent disagrees with the doctor about administering chemotherapy to their child, what is the best course of action for the parent to pursue for the safety and health of the child and to maintain the integrity of the family?
The medical practitioner should provide an expected outcome and prognosis with planned treatment course. For instance if the expected outcome is less than a month it is a reasonable presumption to defer to the family for the decision on whether or not to proceed with the outlined plan of care. Only when there is a good reason such as psychosis, or behavior that a majority of persons would recognize as unacceptable should action be taken to remove custody of the child from the family and or sever legal ties to the parent/s.
In review: If you have questions regarding rights to make medical decisions and what the best course of action would be for yourself or your loved one seek help from family members, a social worker, clergy, or a family counselor. If issues remain unresolved seek a second medical opinion, ask to change doctors or hospitals that may be more open to the approach for care that you prefer to use. You can ask for a review from the Bioethics committee. When these measures do not result in a satisfactory outcome seek advice from an attorney who specializes in healthcare and or bioethics in the area where you live as laws differ from state to state.
