Avoid the Dreaded Caregiver’s Burnout June 14, 2012Posted by ijwoods in Blog+.
Tags: burnout, caregiver, caregiving, dying at home
“Family caregivers suffer from major depression much more frequently than the rest of the population. That’s a fact. When a family caregiver suffers from depression, there are two people at risk – the family caregiver and the family member or friend for whom she or he cares,” From The Family Caregiver
Over the two years that K was ill, whenever I would speak to her brother-in-law he would invariably say to me, “…and who takes care of the care givers?” I could never understand what he was talking about at the time because not only did caregiving come naturally but it also hadn’t reached the point where it felt like it was affecting me. Yet at one point it started it make a whole lot of sense.
You may have noticed that each day my Twitter tweets show up under “news and Twitter updates “ on this blog-site. The tweets come from sourcing and reading articles that I think you will find as interesting as I do about caregiving and end-of-life issues. What I’ve discovered is that a high percentage of articles coming out each day are about some form of “caregiver burnout”. It’s a real problem; and growing.
Although I didn’t reach “burnout”, I can certainly see how it can occur. In my case the caregiving was not that overwhelming early on. In those early days, after the cancer was discovered, K was able to bounce back from treatments. So, for example, although the first round of chemotherapy was very tough she was functioning well again within a couple of months. Thankfully I work from home and had no problem providing transportation and hanging around the doctor’s office or making sure she was comfortable at home. After some time it seemed she had almost returned to normal except for a non-alarming loss of strength weight. So the caregiving at that time, although mentally strenuous, was not crushing.
The last four months she was alive turned out to be a bigger challenge. I found that keeping one’s sanity amidst what can turn into mountains of stress is crucial. There are so many things that are not immediately apparent which gradually come to light as an illness, such as cancer, progresses. Some things that may not seem that obvious earlier on are the financial management considerations, family involvement, the mental confusion your loved one may be going through, the weakness, the fear he or she may fall and break a bone. The list is long.
The person you are caregiving may no longer be on a schedule that coincides with yours. You may need to administer medications around the clock if you have no one there to help you. As a person’s situation worsens it’s easy to find yourself going broke, being a mess at work, getting little sleep and spending your extra hours cleaning house, trying to get something nourishing to eat and doing laundry at all times of the day.
Getting someone to help may not be all that easy if you haven’t started working on it very early on. Even after you found someone you might realize you really don’t want that person around. Your loved one may not want anyone around, so even if it’s a good friend you trust it may not work. And then if you do have someone to help it’s still hard to go out and feel comfortable that everything is going to be okay.
Having hospice care was a blessing, as I pointed out in a previous post. That took a great deal of stress off of me, but they only came over for a short period of time. Their 24/7 accessibility was incredible. I was always able to get a quick response for anything going on that I couldn’t handle, but for the most part I was alone.
When K’s sister was able to come over and help I couldn’t begin to express the relief and gratitude I felt to have someone there who cared and loved K. Her sister made sure I ate well and was able to take care of work. She sat with K while she slept. I had someone to talk to and strategize with. It was very comforting. I was really crazy to think I could handle something like this alone.
In a caregiving situation you can’t afford to get sick or dysfunctional. There comes a time when the caregiving is relentless and if you love the person you will find yourself giving more than you ever gave in your life. One thing that helped me quite a bit was taking a walk each day alone. No iPod; no entertainment or distraction whatsoever. Just me and my self. These walks would allow me to slow down and process all that I was going through. It was refreshing to do this and it saved me from responding to some things out of habit or from a useless mindset.
Another great help was that a friend of mine called each day to check in on how I was doing. She told me to call her, but I almost never did, thinking it would be too much of an intrusion. Not hearing from me she always took the initiative to call during her busy schedule. I am incredibly grateful to her and her very skillful ability to listen in a neutral way. This also helped me get in touch with what was going on inside; and believe me it’s not always apparent.
About a week after K passed away I was at the grocery and my car wouldn’t start. The mechanic who showed up to help was a gruff sort of fellow who didn’t mince his words. As we were talking I told him about K’s passing and he totally transformed. He poured his heart out to me about the loss of his wife to cancer five years ago. He was a Vietnam War veteran who had seen a lot. He told me he is still haunted by the caregiving and misses his wife so much that he works around the clock so that he can remain distracted. Five years later and he was still going through it!
Caregiving someone you love is an amazing experience but it is also quite serious. It’s important to take time for oneself and decompress. It helps to let yourself unwind and maintain a high perspective on life, something K and I both strove to do each day. Watching the way K handled it I would say she did this quite well.
Here are some articles to check out that you may find useful:
This page from Web MD defines caregiver burnout, covers the symptoms and ways to prevent it. Caregiver Burnout
This is a page on the Helpguide.org site which is a non-profit dedicated to health issues. Excellent set of tips for making caregiving easier- Caregiving Support and Help
Here’s a very nice newspaper story about how some people are watching out for themself while caregiving. “Caregivers need care, too. Many caregivers won’t seek help until they’ve become “totally, emotionally exhausted,” Caregivers Need Care Too
Compassion fatigue is a real health risk for long-term caregivers. Excellent article looking at burnout from another angle. Compassion Fatigue is a Real Health Risk for Long Term Caregivers