When a person has to adjust to living with a long term or serious illness, advanced disease, or worsening health, those closest to them find that they are living with the illness too. Family members may become caregivers when they start to assist their loved one with day to day living.
Sometimes caregivers are able to adjust to tasks such as grabbing the mail for a loved one who feels unsteady walking to the mailbox, filling the pillbox for a loved one who becomes easily confused by the labels on the medication bottles, or driving a loved one to the grocery store when they lose the clear vision to continue driving.
Sometimes caregivers find that they have to assist with an increasing number of daily tasks, from meal prepping to assisting their loved one walking from room to room to assisting with showers to assisting with wiping when their loved one uses the bathroom. This may be a gradual increase in the number of tasks over months to years, such as in the case of a person with dementia. Or there may be a sudden need for many self care activities, such as in the case of a person who suffers a severe stroke.
Intense caregiving may last a relatively short time of weeks to months, such as in the case of a previously independent person who becomes quickly debilitated due to end stage cancer. Or intense caregiving may last years, such as in the case of a person who suffers progressive multiple sclerosis (a neurologic disease where the immune system attacks the outer protective layer of nerve fibers, causing nerve damage and difficulty for the brain to communicate with other parts of the body).
If the goal is to be able to personally care for their loved one for as long as possible, it is important for the caregiver to sustain their physical, mental, emotional, and spiritual selves.
Caregiver burnout - ultimately resulting in pulling back from caregiving at home - can happen to even family members who begin caregiving with the best of intentions (read Post 41: Is This Caregiver Burnout? - 20 Signs of Potential Burnout), especially if there are limited resources, education, training, support, and budget. Unfortunately, some aspects of caregiver burnout are due to limitations with our healthcare/elder care system. I discuss below potential actions we can take as individuals to shore up our resiliencies to reduce the risk of caregiver burnout.
Basic physical self care for the caregiver includes obtaining enough sleep (important!), eating daily meals, maintaining daily hygiene, and managing their own medical issues by keeping their own doctor appointments and taking necessary medications.
Basic mental self care for the caregiver includes developing a system for keeping doctors' appointments, tests, labs, medication instructions, medication refills, therapy appointments, specialist names and contact information, blood pressure and blood sugar recordings, and a multitude of other data organized and accessible.
Basic emotional self care for the caregiver includes accepting that it is not possible to maintain a positive, accepting, and patient attitude at all times on all days. Self care includes giving yourself grace when you have had an off day, and an off day may include your crying, yelling, or walking off in frustration, sadness, anger, anxiety, or grief.
Basic spiritual self care for the caregiver includes accepting that there will be many situations where they will not be able to control the decisions, emotions, and actions of other people - those of the loved one that they are caring for and those of the healthcare providers, billing departments, social workers, case managers, friends, and family members from whom they are asking for help. Self care includes reminding yourself that you do not have total loss of control; you can still control your own response to a situation.
Strategies to build up physical, mental, emotional, and spiritual reserve and better cope with caregiver burden include, and are not limited to, the following:
1. Maintaining a physical movement regimen
“I go to the gym every morning at 5 o'clock and work out while she’s sleeping. That’s my release.”
2. Upholding a daily routine with structure
"We start every morning with a cup of coffee, slice of toast, and a lap around the dining room table."
3. Balancing flexibility with daily expectations
"We were going to go on a little outing to the store today but after diarrhea exploded out of her adult diaper this morning, I decided that clean up would be our big event for the day."
4. Delegating tasks to others (read Post 22: Dear Caregiver, Are You Wondering How to Ask For Help?)
“My younger brother is in charge of our father's finances. My older brother is in charge of groceries and house repairs. I physically take care of him day to day and take him to appointments because he lives with us.”
5. Arranging for regular respite hours, such as utilizing senior daycare, volunteers from church, or a trusted relative's house on the weekends
"I drop Dad off at my sister's every other weekend, and that's my time to recharge."
6. Removing the burden of unresolved or incomplete essential documents and tasks
“We took care of the financial power of attorney, the will, and the medical power of attorney [read Post 19: Bringing up Medical Power of Attorney (MPOA) Doesn't Have to be Awkward - A Six Step Guide], thank goodness. That was weighing on me, and now we have that taken care of and I don't have to think about it again.”
7. Preparing for what is to come, such as by reading books or joining support groups
"I checked out a book on dementia. I hate to think she won't recognize me one day, and I'm trying to prepare for that possibility."
8. Being willing to actively seek out answers and solutions, such as by asking healthcare providers for education, training, or advice
“She won’t do her physical therapy exercises with me, only with the home health physical therapist. So we were a little crafty and told my mom that every time she does her exercises, we put a smiley face to mark that day on this calendar. I tell her I fax this sheet to the physical therapist on the days the therapist does not come."
9. Talking to someone who is available and willing to listen without judgment
"I talk to my sisters. They live out of state, so they can't come over to help, but it really helps when I can talk to them about Mom and Dad. I can vent as much as I want!"
10. Joining a community
“I knit, and my friend picks me up and drives us to a knitting circle every Tuesday night. My daughter watches my husband then.”
11. Engaging in a regular activity that allows for mental and emotional distraction or respite, such as watching a movie, working on a 1000 piece puzzle, or going out for a drive
"I've been working on this puzzle for three days. I just finished that one over there. Jigsaw puzzles are the best kept secret in therapy."
12. Engaging in a regular activity that feeds spirituality, such as meditating, watering the plants, or attending church
“My son and daughter in law come over to watch my daughter while I attend church and my women’s group on Sundays.”
13. Regularly focusing on what you have, what you can do, and what your loved one can do to purposefully generate feelings of gratitude and appreciation and reduce feelings of resentment, anger, worry, or jealousy
"I say the Serenity prayer five or six times every day, and I feel much calmer each time."
Instead of the caregiver focusing on how they used to go to the movies every Friday evening or eat out every night, they may need to adapt and modify how to obtain moments of peace and enjoyment, whether it be via a movie on Netflix at home or getting food delivered from a favorite restaurant.
Since time and privacy will likely be limited, the caregiver should prioritize the activities that take care of them the most. These activities should be prioritized often, every day if possible.
Dear caregiver, take care of yourself to better enable you to provide care for your loved one for as long and as sincerely as you intend.