"I moved in to help my parents. I thought my sister in law would keep coming over to help one day a week, but she stopped as soon as I moved in. My brother pays the bills, which helps, but I don't have any time for myself. I have to always be watching them or they'll wander off or fall or get into trouble. I have to rush to get groceries. I'm not sleeping. I can't have peace. I want to take care of my parents, but lately I've been wondering if I should just move out."
When people take on caregiving duties, they do not intend to "burn out." Sometimes they find caregiving responsibilities and tasks require much more of their time, money, attention, energy, and physical ability than expected.
Caregivers might become physically exhausted or physically strained. A daughter might have her father move in only to find that she cannot sleep consecutive hours, having to get up every three hours at night to assist her father to the bathroom. A son might bring his mother home after she suffers a large stroke and strain his back attempting to lift his mother from bed.
Caregivers may no longer be able to continue hobbies or previous levels of social life, having to stay at home to supervise or actively care for loved ones. A wife may have enjoyed playing slots at the casino every Friday night but is no longer able to leave the house without a sitter for her husband. A grandson may have to drop out of a semester in college in order to assist his grandmother with day-to-day self care. The limitations in socialization may result in emotional exhaustion.
Caregivers may feel mental exhaustion by the increasing amounts of information they have to manage. A husband might have to suddenly familiarize himself with his wife's ten medications, their purposes, doses, frequencies, and refills. He might have to coordinate multiple appointments and even struggle to coordinate transportation to those appointments, especially if neither he nor his wife drive. A daughter living out of state might have to learn her mother's medical history, make multiple big medical decisions each time her mother returned to the hospital, and spend significant time at work attempting to coordinate time to speak with her mother's specialists for updates with each clinic visit.
Caregivers might experience unabating stress due to changes in finances. Daily use of disposable adult diapers and high calorie drink supplements can result in noticeable increases in grocery expenses. Caregivers may need to switch to part-time work or retire early to provide active caregiving or supervision of their elderly, sick, or disabled loved ones at home.
The stress of unrelenting difficulty in accomplishing caregiving duties (whether it be due to limitations in time, physical or mental ability, or finances) can result in the caregiver experiencing a constant, overwhelming feeling of "lack":
- lack of time "I keep getting into arguments with my wife because of how often I have to spend nights with my dad."
- lack of acknowledgment by others "My brothers don't get it. They see Mom sitting on the couch when they visit for one hour every other week, and they say she's doing 'Ok.' They don't see the two hours it took for me to assist her to the bathroom, to get her into the shower, wash her, dry her, get her back to the bed where she could lie down so I could dress her, and have her hold onto me as we shuffled down that long hallway."
- lack of appreciation by others or even by their loved one "It's so hard when Mom doesn't recognize me and won't eat my cooking because she says I'm trying to poison her. I can't get through to her."
- lack of finances "She didn't qualify for Medicaid by $83. We worked our entire lives and paid taxes, and we don't get help when we most need it! We can barely afford medications, food, and utility bills. I have to figure out how we can get adult diapers, wipes, and chuks. Those add up fast!"
- lack of confidence "My brother was independent before the stroke. They sent him home like this, and I've been feeling like I'm behind since day one. I watched how to inject insulin and change a diaper and use a feeding tube on YouTube. I'm never sure if I'm doing something correctly. It's pretty stressful."
- lack of accomplishment or worth "I push and push Mom to drink water, and she still gets UTIs (urinary tract infections). Nothing I'm doing is helping."
- lack of privacy "My husband becomes too anxious when I'm not around. If I leave to go to the bathroom, he's already yelling for me. He turned down a Life Alert yesterday because he said he would never need one, that I would always be sitting next to him."
- lack of connection "I thought I had friends. They disappeared when I couldn't go out with them as much as they wanted. Yeah, I feel pretty isolated."
- lack of a sense of self "My whole day revolves around taking care of my husband. I feel like not only did I lose my career, I lost all my friends. I never leave the house, and on the rare occasion I do, I feel too guilty to stay out long."
- lack of control "I don't have a life anymore, and I could really use a break. I don't know how to get one."
- lack of hope "I don't see any of this getting better. I only see it getting worse."
The constant feeling of "lack" over time can result in physical, mental, and/or emotional exhaustion. Caregivers might feel that they have no more of themselves to offer. They may feel "burned out."
The following are signs and symptoms of potential caregiver burnout.
1. Attitude changing from positive, patient, and caring to cynical, impatient, apathetic, or detached
2. Skipping the taxing parts of caregiving
"He sleeps on the couch because it's closest to the bathroom. He gets up on his own to urinate three or four times each night. He's fallen a couple times, and I help him up when he falls. I just can't keep getting up with him every time he gets up at night. I need sleep too."
3. Not wanting to be around their loved one
"He constantly wants me around. It is exhausting. I leave him in the living room with the TV on so I can go clean. He still yells for me, and I yell back that I'm busy."
4. Becoming withdrawn
5. Becoming irritable or prone to angry outbursts towards their loved one
"Mom, pay attention! Read the labels on the medication bottles! Put the medicines in the pillbox! I'm not setting up your medicines for you."
6. Developing mood swings
7. Feeling helpless about their situation
"I feel like I'm not the person to do this job. I need to be around all day and all night, or else my parents will get up on their own and fall. I can't keep this up."
8. Feeling fatigued, drained, or exhausted
"I feel drained. I stay in bed, and I get out of bed only to help him to the bathroom."
9. No longer enjoying activities that used to be enjoyable
"I used to work out at the gym. I haven't been going lately. I can't seem to get motivated. I mean, what's the point?"
10. Feeling a loss of control over their life
"I'm checking his blood sugar four times a day. I'm spoon feeding him, which takes at least an hour. I'm cleaning him right afterwards, which takes time. I try to squeeze baking and grocery runs in between - I have a home business and I make cakes for a living - but I've already had to delay a couple orders..."
11. Experiencing a loss of self
"I quit my job. I don't go out. I've lost my friends. I feel like I don't know who I am anymore or what my purpose is."
12. Trouble concentrating on daily tasks
13. Blowing mishaps out of proportion
"We were going to go out but she had explosive diarrhea! Mom, why didn't you tell me you needed to go?! This mess is going to take all morning to clean up!"
14. Feeling increased resentfulness or frustration towards their loved one
"I'm separated because of all the time I spend here. You should appreciate that I'm here to take care of you!"
15. No longer feeling satisfaction, accomplishment, pride, or joy with their caregiving work
16. Difficulty relaxing and difficulty feeling recharged
"I'm constantly stressed. I can't relax. Even when I try to relax in front of the TV, I have to get up and pace."
17. Developing depression, anxiety, or a constant sense of dread
"I feel overwhelmed and anxious almost every day. When I get really anxious, I have this knot in my stomach and I can't eat."
18. Spending more time in bed and/or struggling with insomnia
"I lie there, hoping he won't ring the bell."
19. Experiencing frequent physical symptoms of being ill and/or aches and/or pains
20. Smoking, drinking, or eating significantly more than previously
Everyone has an off day. Everyone is allowed to be in a bad mood. The above signs and symptoms occurring daily and constantly, instead of on occasional "off days," could be a major indication of caregiver burnout.
Caregivers noticing any of the above characteristics in themselves - characteristics that they would never have imagined when they first began assisting their loved one ("This isn't me...") - may realize that they are burning out. Care from a burned out caregiver who is "running on fumes" could result in mistakes or errors, such as confusing two different types of insulin. It could result in frequent 911 calls for situations the caregiver may have been able to manage when they had more physical, mental, and emotional reserve. Care from a burned out caregiver could unintentionally result in harm (including potentially neglect or abuse) to their loved one. This would be the time to seek help with caregiving as soon as possible [read Post 22: Dear Caregiver, Are You Wondering How to Ask For Help?; Post 36: A Nursing Home for Dad? - Six Practical Steps to Making a Difficult Decision; and Post 40: Five Key Differences Between Home Health Care and Home (Provider/Caregiver) Care].
The first place to seek help may be asking the loved one's primary care provider for a referral to speak with a social worker or case manager to brainstorm realistic caregiving solutions.
This would also be the time for the caregiver to seek respite and care for themself. This may be the time for the caregiver to speak with their own healthcare provider for evaluation for and treatment of potential depression, anxiety, and other medical issues.
Whether this ends up being a partial or complete, temporary or long term step back, it is a necessary step back from caregiving. I will discuss in another post suggestions to minimize risk of caregiver burnout (read Post 42: Thirteen Suggestions for Coping with Caregiving and Decreasing Risk of Burnout).