Cynthia Wilson began caregiving for her disabled mother in 1999. This selfless decision has both inspired Cynthia and brought much joy into her life. Her blog, “Mother’s Keeper: An elder care blog for caregivers of aging parents and senior citizens,” along with years of journalism experience led to the publication of her new book, Who Will Take Care of Mom? A Guide for Family-Managed Senior Care.
In the following interview, Cynthia shares her ongoing experiences as primary caregiver to her mother and gives insight into the delicate subject matter covered in her book.
"When you are involved, you know what is going on with your parents’ health. You know their doctors, ailments, the medicines they are taking and you know when something is off. For example, you notice more if your parent is having a bad reaction to medication, if their memory is failing, or if they are having difficulty getting around. You can react sooner and provide more information to the doctor."
ParentGiving: What prompted you to become your mother’s primary caregiver?
Cynthia Wilson: I was concerned that she wasn’t safe living alone because she was blind and vulnerable to crime. Also, her health was failing. I noticed that she wasn’t getting out as often. I feared that her quality of life was deteriorating and that if I didn’t step up, she’d get much worse or die—something I wasn’t prepared to emotionally accept.
PG: What were your biggest trepidations about taking on this responsibility?
CW: I worried about the effect it would have on my ability to work and do the things I wanted to do. I didn’t want Mom to sit in the house all day waiting for me to get home and I didn’t want to have to do everything for her. So I looked for some place she could go during the day and found in-home help to make sure she wasn’t alone long and that she ate if I worked late or wanted to go out. Given my age, there was some concern about sacrificing my freedom and any chance that I’d have at having my own family, but it wasn’t my main concern.
PG: In your book you state, “I personally believe that family-managed care is the best way to ensure that your relatives are getting the care they need…” Could you expand on how and why you came to that conclusion?
CW: When you are involved, you know what is going on with your parents’ health. You know their doctors, ailments, the medicines they are taking and you know when something is off. For example, you notice more if your parent is having a bad reaction to medication, if their memory is failing, or if they are having difficulty getting around. You can react sooner and provide more information to the doctor. I know that my mother is getting better treatment because I understand what the doctor is trying to convey, and her doctors know she has an advocate to speak on her behalf and make sure she’s doing the things he or she has prescribed.
PG: How does a grown child walk the fine line between taking “an active role in your parent’s long-term care” and taking over their life?
CW: First you must accept that you are the helper, not the boss of your parents. Find out what your parents want and do your best to provide it. Keep your parents involved. Make sure that they are a part of the discussion about care choices and let them make the final decisions, if they are able to, about their care and finances.
PG: In chapter seven of Who Will Take Care Of Mom?, you address the growing trend of states making children financially responsible for their parents’ long-term care and debts. How can adult children educate themselves about their respective state laws and how to best protect their assets?
CW: Twenty-nine states have filial responsibility laws. (A simple Google search will provide the list.) Once you determine if you or your parents live in a state that has these family responsibility laws, look up the statute and read it thoroughly. Honestly, I believe the only way to protect your assets if you live in a state with filial responsibility is to mitigate the risks. If your parents can afford it, make sure they have supplemental Medicare insurance. If they can’t afford the premium and you and your siblings can help with the premiums, do so. If your parents don’t have enough income or assets to take care of themselves and won’t have enough time to accumulate assets, find out how they may qualify for Medicaid assistance to help pay for health care. If they don’t or won’t qualify because they do not want to forfeit certain assets, then I think family-managed care is the best way to go, with family coordinating and providing the care and utilizing the assets they have available. My book offers details on how to implement a family-managed care plan.
PG: What are the pros and cons to supplementing home care with adult day care? How has this helped or hindered your own situation?
CW: With adult day care, your parents have some place to go, which means they have something to look forward to and are not isolated. Adult day care also provides another set of eyes to help you assess their wellbeing. Lastly, there is less opportunity for strangers to be alone with your parent and you don’t have to sacrifice as much of your privacy by having a non-family member in your home several hours a day or week.
PG: How can a concerned out-of-state relative best participate in the care of a loved one?
CW: Start by making sure you have a good understanding or your parents’ medical needs and living situation. Schedule a visit with their doctor the next time you are in town or ask your parents if you have their permission to talk with their doctor by telephone. Make sure the house they live in is secure and safe. Identify a family member, friend or neighbor who will assist your parent, if needed, during your absence. Talk with your parents about the things you can do for them from a distance and commit to doing it.
PG: Do you have any tips for other caregivers on how to relieve stress and make sure that their own needs are being met on a holistic level?
CW: Even if you can’t get out as much as you’d like or exercise as much as your want, don’t isolate yourself. Talk to family and friends when you are stressed. Ask for help and some time off, even if it’s just for a few hours a week. Find a caregiver support group so you can talk to people in similar situations and learn from their successes and mistakes.
PG: Clearly you are a passionate advocate for home based care. What have been the greatest rewards of your own journey?
CW: During my mother’s first doctor’s visit after she came to live with me, her doctor told her that her lab results were so bad he feared the next time he saw her she would be fighting for her life in intensive care because of a heart attack or stroke. Three months later, he said her lab results were in the normal range and he couldn’t be more pleased. That was more than 13 years ago. Her ailments still exist, but they are under control. She danced at my wedding, knows my husband and child and she has held her great grandchildren.