Dear Candid Caregiver: My dad is in the middle stages of Alzheimer’s disease. Meanwhile, my mom is recovering from cancer surgery, and the prognosis isn’t good. I’m trying my best to be a good caregiver for both of them and stay positive while doing it, but it’s hard.
I recognize that we’re fortunate in that my parents are able to hire an agency that supplies a rotation of in-home caregivers. The other side of it is that I have a brother and a sister, both living hundreds of miles away from our parents and me, so they can’t help out much. They try to be sympathetic and appreciative of what I’m doing, but their suggestions usually feel like criticism. It’s never overt, but they simply have no understanding of what it’s like to have the responsibility that I have, so their attempts at “helping” by offering simplistic, sometimes insulting, advice hurts me.
I love my parents and I want to help them but I have a hard time not sliding into general negativity. How do others stay positive when they see caregiving going on for years? – Gloomy Suz
Dear Gloomy Suz: I’m sorry for what’s happened to your parents and for your own understandable struggle. Two parents who need care at the same time is difficult, and your mom’s poor prognosis must color each day that you have together. Nearly anyone in your situation would be struggling to stay positive, but I can suggest some tools that might help.
Let’s start with the fact that it’s unrealistic to expect yourself to be a positive caregiver every minute. You are trying to help your dad live well with his Alzheimer’s diagnosis as well as looking at the fact that your mom may not survive her cancer for any length of time. Give yourself credit for persevering under these difficult conditions, and even striving to make caregiving a happier time.
The National Institutes of Health (NIH) maintains that caregivers have both positive and negative responses to their role. This shouldn’t be surprising because most of us do experience both emotions. Their goal seems to be to show that family caregiving isn’t just a burden; it’s worthy and can also be uplifting.
I feel that while well-meaning, this data might best be ignored by individual caregivers who are going through a hard time. It would be easy to take this information to heart and simply feel more burdened and guilty for not being “positive” about your caregiving experience all the time.
That being said, one aspect that is highlighted by the NIH is how much difference perceived social support received by the caregiver can make. This is an absolute truth. Thus the effectiveness of both online and in-person caregiver support groups.
AARP offers an article on positive caregiving by clinical psychologist Dr. Barry J. Jacobs. In his article titled Repeat After Me: I Am A Good Caregiver, Dr. Jacobs offers some suggestions such as guarding against shame and eliminating old messages that we torture ourselves with. His tips are timeless and guilt reducing.
I’ve found some additional methods helpful for refreshing my own caregiving attitude, so I’ll offer these ideas to you as a potential way forward:
- Learn to cope with negative input from outsiders by seeking support from other caregivers. Yes, I touched on this above but it bears repeating. Having the loving support of other caregivers can help you learn steps that work for you when you have to face down ignorant or cruel input from outsiders. Search out a support group, or in your case, you might benefit from two; one for cancer caregivers and one for Alzheimer’s caregivers. Time-consuming, yes, but even online groups can be an enormous help and they are quite convenient.
- Absolve yourself of the need for perfection. Caregivers seem to be repositories of unearned guilt. In my mind, one of the most effective ways to have a more positive attitude toward caregiving is to understand that guilt is counterproductive. If necessary, see a counselor. It’s important that you work at erasing that burden from your thought process.
- Adjust your expectations to reflect reality. We can’t fix our loved ones who are living with terminal diagnoses. We can only try to make their lives as good as they can be given their circumstances.
- Learn to say no to outside demands that add to your burden. If your friends don’t understand that you can’t drop everything to meet for coffee, that is their problem. It would be nice if they could learn to be a better friend to a caregiver, but if they can’t, it’s their loss.
- Create a journal. It’s a way to make order out of chaos. For some people that just seems like more work. A formal journal can be, but my approach to journaling is broad. If you love the idea of a beautiful book to write in, please splurge and buy yourself one. However, for many, a Word document on their computer desktop works fine.
- Structure your journal as you’d like it, but keep that structure fluid to reflect your own growth. I’d suggest at least two categories. One is to list and explore your frustration, depression, and, yes, anger (your parents’ health struggles are bound to make you angry). Then, make a page where you can list each positive emotion about caregiving. These might include noting a rare, beautiful moment of clarity experienced by your dad, or his joyful reaction to your offering of music. Quality time making memories with your mom would certainly qualify, as well.
- Engage in outside activities that you enjoy. Your last statement led me to believe that you are looking at the future as solely one of caregiving. I understand the feeling of being too exhausted to even think of going out, but you do need to work on finding a balance. Look for activities that you enjoy, whether they are solitary, such as reading or taking a walk in a park, or social such as lunch with friends. You are high risk for caregiver burnout so self-care is vital. Part of self-care is finding something in life outside of caregiving that is satisfying to you.
It’s admirable and even sensible to try to find the positive in most situations, Suz. Considering the fact that you’ve spent years as a caregiver and are likely looking at more years of the same, taking steps to care for yourself is key and can improve your outlook. Everyone's mental and physical health can benefit from finding a more positive outlook, however, no one can stay in that place constantly, so don’t put that expectation on yourself. If you find yourself becoming too negative, please do see a counselor. If anyone can use some compassionate guidance, caregivers can.