"Although family members commonly undertake care for an ill or elderly loved one willingly and find it to be a great source of personal satisfaction, caregivers themselves need support services. A large and growing body of evidence confirms that providing care for a chronically ill person can have harmful physical, mental and emotional consequences for the caregiver."
Since the truth can set us free, I am including data and quotes from the Family Caregiver Alliance from their website (see links section of this website).
Key findings
"Informal caregivers are at risk for many different physical and mental health challenges.
They:
- Suffer from high levels of stress and frustration.
- Show higher levels of depression than the general population
- Sometimes exhibit harmful behaviors, from increased use of alcohol or other substances to higher than normal levels of hostility.
- Are in worse physical health than those not engaged in giving care. They have more chronic conditions such as heart disease, high blood pressure, diabetes and arthritis than their noncaregiving peers. They may also suffer from poorer immune function and from exhaustion.
- Neglect their own care (have lower levels of self care and preventive health behaviors than others).
- Are more likely to lack health insurance coverage due to time out of the workforce.
- Have higher mortality rates than noncaregivers of the same age."
After a serious wake-up call from my doctor, I came across this information which amplified exactly the same concerns she discussed with me.
I didn't really want to hear what she said--me, I'm the stick-your-nose-to-the-grindstone kind of girl. I have always believed that if I could figure out how to do something, that it could be done.
The problem is, that this is totally performance-based thinking...my goals are good, but my real capabilities and limits must be included in the plans I make for myself, and my family.
Yep, just ask me about the pain I experience with the exposed dental roots of my teeth from 14 years of no dental care. Or, how about what it's like to live without health insurance for almost a decade--it's really tough to obtain medical care without insurance, believe me.
Just recently, a friend and adviser finally talked me into allowing a benefactor to pay for my medications (I had been rationing them for most of this year). Yeah, I know better than to do that, but there I was trying to get along on my own. It's so nice to not worry about my prescriptions anymore--now I can devote that energy to another battle for our survival in the autism jungle.
The greatest obstacle to getting support has been a matter of perception really. I have been so isolated from spiritual, social and even family support because I thought that sharing honestly about my lifestyle as a caregiver was just whining.
Not true, but it sure felt like it was. Reality set in as I read the fact sheets that the FCA published on their website...now I feel much more confident that it's not about whether I'm doing a "good-enough" job of taking care of my autistic husband and kids.
It's also very much about taking care of myself.
If you know a caregiver of autistic children or adults, ask how you can help them--not just once, but keep asking. After awhile, they might just believe that you really want to help, and then you can truly make a difference.
If you need ideas on how to help, e-mail me with your request for caregiver support ideas.
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