Sandy Padwo Rogers
Marilyn* has been providing hands-on care for her husband, Jim,* since 1997. This is the year when Jim suffered a stroke that forced him to stop working and thrust Marilyn into the role of family caregiver.
Jim had been a high-maintenance diabetic for years. His blood sugar level needed continuous monitoring and his insulin required tweaking fairly often. He also had many of the co-morbidities that typically accompany diabetes, such as high cholesterol and hypertension.
Since Jim’s first stroke in 1997, he has suffered two more strokes, required vascular surgery on his leg, and has been treated for prostate cancer. Today, he sees multiple doctors to treat his various conditions, including a primary care physician, a cardiologist, an endocrinologist, a neurologist, an ophthalmologist, a podiatrist, a vascular surgeon, and a wound care specialist.
In mid-2010, Marilyn’s mother, a type II diabetic who had been living alone after the death of Marilyn’s father, suffered a fall that required her hospitalization. This event marked the beginning of a downward spiral for Marilyn’s mother, who subsequently spent significant amounts of time in the hospital and a rehab facility. On top of her declining physical health, Marilyn’s mother has been showing increasing signs of dementia.
After many months of hospitalizations and rehabilitation, Marilyn’s mother was finally able to return to her home with what amounts to round-the-clock care, some of which is provided by home care aides and some by Marilyn and her sister. While physical therapy first appeared to be helping her mom regain some mobility, her therapists concluded that she had reached a plateau in her recovery and her physical condition is beginning to decline once again. Marilyn and her sister take turns at their mother’s home, with one or the other there each night for several hours making sure that their mom takes her medicine and gets into bed safely, the latter of which is a two-person task that can’t be done by the aide alone.
The fact that Marilyn must spend so much time helping her mom means that she must prepare Jim to be alone until late at night. This includes fixing all his meals for the day before she leaves the house in the morning. What’s more, on top of her numerous caregiving duties, Marilyn has a very demanding full-time job. As the sole breadwinner for the family, she doesn’t have the option of cutting back or stopping work entirely. She is grateful for the fact that her employer allows her to work flexible hours and to telecommute on occasion.
Between caring for her husband and her mother, one could say that Marilyn has seen it all when it comes to the challenges of being a family caregiver. We asked her if she would be willing to share some of her hard-learned lessons with other family caregivers.
Use Past Experiences to Guide Your Actions
Marilyn’s experiences navigating the healthcare system with Jim definitely helped her when it came time to care for her mom, she says. By the time she became her mother’s family caregiver, she had already learned how to advocate for a loved one in a medical setting.
This knowledge was earned the hard way. When Jim was suffering his first stroke, the symptoms were mild enough that Marilyn wasn’t sure what was happening to him. She just knew that something was wrong. She took Jim to his primary physician’s office. To her dismay, Jim’s doctor dismissed his symptoms, telling Marilyn to follow up with a neurologist in several days. Convinced that Jim needed immediate attention, Marilyn gently but firmly informed his doctor that she wouldn’t leave his office until an appointment with a neurologist was scheduled for that day. The physician eventually acquiesced and helped her set the appointment. The neurologist took one look at Jim and told Marilyn to take him directly to the hospital. It was only then that she realized that if not for her refusal to have her concerns dismissed, Jim would not have received the medical attention he needed when he needed it, and the outcome could have been far worse.
This lesson came in handy when Marilyn’s mother experienced her first fall at home. In the hospital, Marilyn informed the medical team that her mother had been losing her balance, losing weight, and experiencing a loss of feeling in her hands. Her mother’s physicians dismissed these symptoms as nothing more than arthritis and the effects of old age. It was only after Marilyn insisted that her mother’s complaints should not be so easily dismissed that the medical team did more testing, eventually discovering the true cause of her mother’s symptoms: a spinal cord compression of her neck.
Different Care Recipients Sometimes Require Different Approaches
What Marilyn’s experience as a caregiver for her husband didn’t really prepare her for was how different the caregiving experience would be when her own parent was on the receiving end of her care. “With a spouse, you can be open about how you feel and you can say what’s on your mind, even if you’re saying something a bit blunt,” she says. “I had a totally different reaction when I began caring for my mom. With a parent, there’s a certain respect you want to show and you find that you can’t say things in the same manner as with your spouse. You can’t be as blunt in your conversations.” It’s a totally different type of communication that has been very difficult for Marilyn and her sister. Marilyn has also found that dealing with her mother’s cognitive decline has been far more difficult than dealing with any physical illness or condition. “With dementia, you feel like you’re losing the person,” she says. “This has been the hardest part.”
When asked what she has learned as a result of all her experiences, Marilyn doesn’t hesitate to answer: “Love is the greatest factor with any caregiving situation and it finds a way to prevail. It’s so much more important than all the external stuff.”
You Can Make the Difficult Decisions
As a family caregiver, Marilyn has had to make some very difficult decisions, both for Jim and her mother. During one of Jim’s hospitalizations, he was told that he needed his leg amputated. Marilyn felt certain that a second opinion was necessary. When the hospital pushed back against her request, she insisted that her husband be transferred to a different facility. “Getting Jim transferred from one hospital to another was a very difficult decision,” she recalls. “I just wanted a second opinion but the hospital staff was extremely resistant to this request, making me question my own judgment. In the end, though, I was able to get Jim transferred and found physicians who were willing to take a less-invasive approach to Jim’s treatment. While they did need to amputate Jim’s toes, his leg was saved. I know that we had a more positive outcome because of the decisions I made as Jim’s advocate.”
Marilyn and her sister had to make a difficult decision regarding their mother’s care as well. Faced with the prospect of their mother losing her mobility, they had to decide whether or not to allow their mom to undergo neck surgery at the age of 82. “My sister and I knew that at her age, surgery was risky,” says Marilyn. “But we also knew that we didn’t want her to suffer and she was clearly suffering. We opted for her to have the surgery and, for a short while, our mom experienced relief from her pain and increased mobility. Unfortunately, we soon began to see signs of cognitive impairment, along with vascular swelling of Mom’s lower extremities, both of which limited her mobility once again.”
What did these decisions teach Marilyn about herself? She reflects on the question before answering: “I learned that we all have an inner strength to do what needs to be done. This strength comes out when we need it.”
General Advice for All Family Caregivers
What advice might Marilyn have for other family caregivers? She first qualifies her answer by recognizing that there are two ways to come into the role of family caregiver: You can be thrust into the role as a result of an accident or acute illness or you can become a caregiver in a more gradual way due to your loved one’s declining physical health or cognitive function.
Marilyn was thrust into her caregiving role for Jim when he experienced his first stroke. With her mother, Marilyn experienced a more gradual transition into caregiving as her mother’s health slowly deteriorated. With both caregiving scenarios in mind, Marilyn does offer some general advice that she hopes will resonate with all family caregivers:
• Ask questions: It’s not only your right, it’s your obligation.
• Educate yourself: Learn as much as you can about your loved one’s illness or condition, including the future prognosis for any illness or disability. Don’t be afraid to share what you’ve learned with the medical professionals with whom you come into contact. You can share your knowledge in a way that’s respectful, not confrontational. You can learn to communicate your thoughts and concerns without challenging someone else’s knowledge or authority.
• Believe in yourself: You know your loved one better than anyone else. Trust your instincts when it comes to knowing how best to address your loved one’s symptoms, condition, and care. Pay attention to the subtle changes in your care recipient and don’t hesitate to bring these changes to the attention of a medical professional. Even if you notice what appears to be a gradual change, don’t dismiss it. Your loved one’s physicians need to know everything.
• Reach out for help: Never let an opportunity to ask for help pass you by, even if you’re feeling intimidated by your surroundings or the healthcare professionals who are treating your care recipient.
• Speak up for your loved one and yourself: You need to be respectful but firm when dealing with healthcare professionals, many of whom don’t always give the family caregiver’s input the attention it deserves. Don’t allow your concerns to be dismissed. It is part of your role as a family caregiver to serve as an advocate for your loved one. Never allow yourself to be made to feel that you shouldn’t be acting as your care recipient’s advocate. This may be the most important role you play in your loved one’s care.
At the same time, don’t forget to speak up for yourself. Doctors and other healthcare professionals need to understand that you are a member of their patient’s healthcare team and, as such, you should be treated with respect. They also need to understand that as a family caregiver, your health and well-being are likely compromised and they should be keeping an eye on you as well.
* Names have been changed to protect the privacy of the individuals involved.
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