The Impact of Caregiving on the Caregiver
As I was taking my morning dose of Advil (4 tablets rather than 2), I was curious about my future as a caregiver and what being a caregiver was doing to me personally. So I thought I would look up to see if any research had been done on that topic. The Family Caregiver Alliance had a nice comprehensive summary of what research says on their website. I caution you though, that if you are the receiver of care, this might make you feel guilty and if you are the caregiver, it might make you feel depressed. That is not my intent. I think these facts are important to realize; however, so that appropriate decisions can be made for everyone’s future.
Mental and Emotional Health Impact of Caregiving
- Caregivers have higher levels of depression (40-70% have signs of clinical depression).
- They often have coexisting anxiety disorders, substance abuse or dependence, or chronic health disease along with depression.
- Caregivers have higher stress levels experiencing symptoms of frustration, anger, feeling drained, guilty or helpless.
- They report feeling a loss of self identity, lower levels of self esteem, constant worry; feelings of uncertainty, less self-acceptance and feel less effective and in control of their own lives.
- More than one-fifth (22%) are exhausted when they go to bed at night and feel they cannot handle all their caregiving responsibilities.
- Caregivers who experience chronic stress may be at greater risk for cognitive decline including short-term memory, attention and verbal IQ.
Studies indicate that stressful caregiving situations may result in the caregiver participating more often in the use of alcohol or other substance abuse and caregivers often use prescription and psychotropic drugs more often than non-caregivers. In addition, family caregivers are at greater risk for showing higher levels of hostility. Over time as clinical depression increases and the person they are caring for shows greater impairment in mental and physical dependency, the caregiver is more likely to engage in harmful behavior toward their loved one if they themselves have become depress. Depressed caregivers also show a greater incident of suicide.
Caregiving Impact on Physical Health
- Eleven percent (11%) of caregivers say their own health has declined since taking on caregiving responsibilities.
- Caregivers have a lower level of subjective well-being and physical health. In 2005, three-fifths (45%) of caregivers reported fair or poor health status, one or more chronic conditions, or a disability, compared to one-third (24%) of non-caregivers.
- Caregivers suffer from increased rates of physical ailments (including acid reflux, headaches, and pain/aching), increased tendency to develop a serious illness, and have high levels of obesity and bodily pain.
- Studies show that caregivers have a diminished immune response leading to frequent infection and increased risk of cancer (caregivers have a 23% higher level of stress hormones and 15% lower level of antibody response). They also suffer from slower wound healing.
- Ten percent report they are physically strained.
- Caregivers exhibit exaggerated cardiovascular responses to stressful conditions which put them at greater risk for the development of cardiovascular syndromes such as high blood pressure and heart disease. They also are at greater risk for diabetes and higher levels of cholesterol.
- Women who spend 9 or more hours per week caring for a disabled spouse increase their risk of heath disease two-fold.
Caregivers Use Less Self-Care Measures
- They are less likely to engage in measures to improve their health or prevent it from getting worse such as eating well and exercise, seeing a doctor when new symptoms of disease show up.
- Spousal caregivers who provide 36 or more hours of care per week are more likely to smoke and consume saturated fat.
- They often fail to fill prescriptions on time
- They report not going to the doctor themselves (72%) when they should and 55% report missing doctor’s appointments.
Caregivers report a lack of time and energy to prepare proper meals or exercise. Sixty-three percent say their eating habits are worse and fifty-five percent say they get less exercise. If they live in a rural area, it’s even worse due to the difficulty of getting to the doctor or hospital for care.
The Ultimate Price for Caregiving….
Caregivers who experience strain associated with their caregiving duties have a 63% higher mortality rate than non-caregivers
Reading through the lists above, I have experienced most of what people in the studies report. I eat worse, get almost no exercise, get very little sleep, “hurt” most of the time, do not go to the doctor to check out my own medical concerns, have periods of depression, and have experienced most of the emotional reactions listed. I admit; this worries me, but the odd thing about it is that I’m more worried about what will happen to Lynn if I die early than me dying. Honestly, for me, it would be a relief to leave this world of stress and pain (don’t get me wrong – I’m not suicidal; I don’t have a death wish; and I’m not ready to die now) but for me, I plan on going to heaven where there is no pain and suffering and no burdens so I expect to be much better off when I die. No, my worry is about what my dying would mean for Lynn. Who will take care of him? He’s too much for any of the children to care for so I have to be realistic about our future and do what I need to do to keep going as long as I can.
My other fear is what happens if I don’t die but if I become unable to care for Lynn? What if I get cancer or have a heart attack or stroke? I bought long term care insurance for that very reason. I was not able to get it for Lynn; however, because he was in the process of being diagnosed with MS when it was offered at work and the mire fact he might have MS as a diagnosis, disqualified him from coverage. (Doesn’t make sense does it?)
I do my best not to dwell on the future as something potentially negative; however, I think we need to know what to expect so we can prepare now. The reality is, Lynn cannot care for himself and we have no federal or state assistance that can provide help for me to care for him. I have to work full time and I want to keep the job I currently have because it pays well, has good benefits, and allows me to work from home most of the time so I can care for him—plus I like my work. I plan to work until I can’t do it anymore so we can keep our life as it is now. I’m really not trying to be morbid but honestly, if it comes to me not being able to care for him because I have developed a terminal medical condition, I hope I die sooner than later before I use up our savings and while I still have the level of life insurance I carry on myself now, at work. I have to plan for him if he survives me. That’s part of my responsibility as a caregiver, too.
For myself, if I plan for the future and manage some of the “what ifs” now, then it reduces my stress level and the snowball of events noted above is delayed and after all, that’s my goal, to live a long and healthy life and enjoy my time with Lynn and the rest of my family as long as possible.
Have you ever experienced a "weird" symptom and wondered if others with MS have experienced it too?