The Stress of Being a Caregiver
Having a loved one that is dealing with an illness or disease is a hard pill to swallow. From the moment of diagnosis, your life is changed. If your spouse has Huntington’s Disease, then you are equally affected. If your child has Factor XIII Deficiency, then you are dealing with a deadly clotting disorder.
The stresses and worries that plague a person with one of these conditions strike the caregiver as well. Your health and well-being is every bit as important as the health and well-being of the patient.
A study conducted in 2004 by AARP and National Alliance for Caregiving estimated that there are over 44 million adults who provide a level of care for a friend or loved one. This represents over 20 percent of the adult population. These selfless people provide a free service valued at over $250 billion dollars in about 20 percentof the homes in America.
The study asked caregivers about the Level of Burden in the care that they provided and used that as a measurement against the perceived health of the caregiver. The Level of Burden was a 5-point scale with simple tasks rated a 1 and difficult tasks rated a 5. They also created an index based on the level of burden, the activities of daily living, and the amount of time dedicated to caregiving. Nearly 20 percent of the people polled said that they provide more than 40 hours of care per week. Over 80 percent were caring for a family member. Over half were managing care for someone and working at the same time, and over 60 percent were married or living with a partner. That’s a lot of juggling. Most of these people provided this care for at least four years.
When asked, most of the people surveyed said that being a caregiver wasn’t that hard physically, and not very emotionally stressful, and not a financial burden. Of the ones that responded with a high level of stress or strain, they generally said that they didn’t have a choice of whether or not to be a caregiver. These respondents also reported a lower sense of their own personal health. About half of these folks said that they needed help to manage their stress. They were also more likely to spend more money on the person in their care than they did on themselves or their loved ones. Over a third had asked for information on getting financial help for the person in their care.
The troubling thing is that the person in their care will often not be getting any better.
The American Psychiatric Association recently updated their list of what qualified as a mental disorder. New on the list this year is ‘grief’. As you deal with the loss or decline of a loved one, your mental condition is on the same list as ‘autism’ and ‘psychosis’. In many cases, the grieving process starts before the actual death. Add that to the burden of being a caregiver.
What is your outlet for dealing with this stress?
Lee Ann Cox is writing a book about the loss of her husband. She expressed her feelings daily over Twitter and is weaving this 140-character-per-page diary into a narrative about the toll that his cancer took on her young family. It was a way for her to scream out loud as her world crashed around her. How will you know when it is time to scream out loud? When is it time to cry out for help?
Listen to yourself. Do you feel as if you’re never rested? Do you have flashes of anger at those around you? Are you unable to eat or sleep? Have you noticed issues with the person in your care, like missed medication or skin problems? You have to care for yourself if you wish to have any hope of caring for another.
The first step is to define the reality of your situation. What is the prognosis of the person in your care? Be informed, and know what is coming in the days, weeks, and years ahead. Defining this reality will help you to be better prepared and have a plan for if and when things seem to go from bad to worse.
Part of your plan needs to include time for yourself. Are you able to engage others in your caregiving? Many parents commit to a specific ‘date-night’ and point to that
as a key to a healthy relationship. Is it possible to arrange a ‘sitter’ for the person in your care?
It’s important to have hope. Hope is contagious, and while your hope may be different than the person in your care, it’s still important to care. Perhaps it is the small hope for a miracle cure; perhaps it’s hope for a better today. Either way, it’s hope.
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3 Responses to The Stress of Being a Caregiver
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My husband is only 57 years old, but the last 2 years his body is gradually being attacked by crippling arthrtis, gout and high blood pressure. He gets very frustrated and depressed because he can not do anything without constant pain. His frustration level is very high and he has no patience with anything. Especially me! He has had to go on disibility, but now we are also on a fixed income and when things go wrong, they are much more stressfull. Sometimes I was get overwhelmed by everything.
Thank you for listening.
T. Williams
Hi Teresa. Thank you for sharing your story with us! Being a caregiver is really a lot harder than people know. It is for that reason that we try and highlight just how difficult it is, and also how important it is that caregivers get the rest and recognition that they need. We do hope things improve for you soon, and we will be sure to continue to share stories which help not only those with illnesses but also those that take care of them. We wish you the best!
my wife and i had four kids with h/ d we c were caretakers for 17 years in the last 4 years all have oassed on , it very very hard on everyone god bless all