Painting by Rafe Schiwwmer courtesy of The Art of Alzheimers
4) Take care of yourself. Your life may depend on it!
Dementia in later stages can be all consuming. It may involve repetitive questioning or progress to a loss of executive function entirely. Caregivers cope with heavy demands for attention and sometimes ongoing resistance or aggressive behavior. Nitty gritty hygiene needs and unpredictable behavior can be a daily reality. For some round the clock monitoring is necessary. Dementia can last 7 years or more and there are no drugs that cure and few that slow or manage the condition. This presents caregivers with a challenge: where is the time to take care of myself?
I learned quickly how exhausting dementia care can be but it took longer to learn the importance of taking care of myself. People had told me that what I could give to caregiving was proportional to what I gave to myself but I had to find that balance before understanding how true it is. What I can tell those of you who are not yet able to find your way to prioritizing self care is-- please, start today! Finding a way to take care of yourself in caregiving is absolutely critical for you and the one you assist. Put aside any fears that it's selfish. In fact it's your secret to providing good care. It's the key to your sanity and survival.
Survival? Yes, not many caregivers think their work poses survival risks. Have you? Yet the unique demands of dementia caregiving generates stress levels that can present both health and mental health risks as the Alzheimer's Association's thorough 2019 Alzheimer's Disease Facts and Figures reports. In fact, among all caregivers, people caring for dementia experience the highest incidences of depression and anxiety. Furthermore, according to Caregiver Action Network the stress of taking care of a family member with dementia can actually impair the caregiver's immunity for up to 3 years after caregiving concludes. Levels of stress can be coupled with declining self care such as not regularly eating well, neglecting exercise, and losing touch with friends. Add to that economic worries from the cost of care and personal sacrifices. Excellent research by the National Alliance for Caregiving states that 75% of caregivers either take time off work or cut back on hours to provide care. Caregiving is generous and usually essential but never underestimate it's potential risk to your health and financial stability. Make your promise to be there for someone else, yes, but be there for yourself as well.
In the video below, geropsychologist Natali Edmonds, discusses the risks of dementia caregiving and offers four tips for lowering stress while in a difficult caregiving situation
Learning to take care of oneself isn't usually the strength of a caregiver. That makes this lesson especially valuable. I understand that taking care of oneself feels impossible at times. In fact I've sometimes felt like kind reminders to take care of myself lack a full grasp of the dementia caregiving experience. Other times well meaning reminders to take care have landed on my list of responsibilities as one more thing I need to do. When I feel like that I know that taking care of myself is more important than usual. Maybe it's just going outside and feeling the day for 5 minutes (take the garbage out and linger...that kind of thing) or bringing flowers into the room. Maybe it's a long bath at day's end. Once that habit of self care gets started it's a foundation for building a stronger routine. Many people make it a point to add something pleasurable regularly. Try scheduling a block of time every single day that belongs to you and you only. Regularly scheduled daily time helps to build a routine and helps the person you care for accept and anticipate your absence provided they still enjoy the ability to track time. Consider developing a stress relief method such as self compassionate meditation. Meditation is no farther away than an app these days and it's very effective in countering stress.
Most caregivers are experts on care and can recite the elements that make up good self care. As familiar as this this information may be the video below holds several important reminders about applying those elements to one's own life. In it, the narrator tells us that each self care routine is unique to our needs and circumstances and outlines signs that tell us it's time for a break.
As I've become better at self care I've built up my reserves and feel more able to be patient and caring in all circumstances. I'm a better caregiver--more tolerant, creative, and attentive--and a better person. Taking care of myself strengthens my boundaries in life and helps me to see what my responsibilities are as an individual. I'm more giving of myself when I practice self care because I'm more confident that I can and will replenish myself. I can be there for other people because I know I will be there for myself.
Self care works. Dear reader, I hope you either have it in your life or will find your way to trying it!