jump to navigation

Avoid the Dreaded Caregiver’s Burnout June 14, 2012

Posted by ijwoods in Blog+.
Tags: , , ,
trackback

“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

Comments»

1. blessedbebeth - June 15, 2012

Ira,

Of course this hits home, I think running over my feet a few weeks ago is a perfect example of what you are speaking of…and the care needs do not stop when we are injured or overwhelmed. Naturally the injury is taking a lot longer to heal. At any rate, another excellent glimpse into what surely lays ahead.

I will check out the articles you referenced. I did get out for a walk today and even though I am up in the middle of the night, I did sleep better for those few hours.

The doctor put mom on a new scary serious pain med today, and even though I didn’t tell her what it is, and she seems to be sleeping a bit better than for the past few nights, I can’t help but remain watchful.

Would you consider guest blogging a post on middlescapes? Even though I reference your posts from time to time I would love for my readers to have the benefit of your infinite wisdom. Let me know, I post on Tuesdays.

Thanks again.
Beth

ijwoods - June 15, 2012

When I read your post about the accident I could totally understand how it could happen. During my caregiving period I was so disoriented, even though I didn’t consciously realize it. I could tell I was not functioning normally by my actions.

Infinite wisdom – ha! Still, I would be honored to guest blog. It’s that I feel a strong passion towards this that gets me writing. Please send me your direct email through my contact page so we can talk about it.

2. blessedbebeth - June 15, 2012

will do. and done. looking forward to collaboration. B

3. Dawn Waddell Elledge - June 26, 2012

According to the Journal of Gerontology, 38:344-348 there is an index for “Caregiver Stress” that lists SOME of the things that caregivers have experienced indicating a high level of stress depending on how high the score ranks based on each of the index responses to the questions. These things include everything from lack of sleep to family adjustments (life adjusting) and many other overwhelming demands that only a caregiver can try to explain.
I strongly recommend the http://www.caregiver.org website or join a support group; go to http://www.nfcacares.org and also see some of these resources here below..

http://www.powerfultoolsforcaregivers.org/

http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=354

Family Caregiver Alliance – premier website for families, caregivers, policy makers, providers and media to access information on caregiving. Free reports, fact sheets, newsletters, support groups, and care advice.

Agis.com – broad range of information for caregivers. Checklists, articles and “Ask the Expert.”
Arch National Respite Network and Resource Center – supports service providers and families through training, technical assistance, evaluation, and research.

Caregiver.com – articles on caregiving, caregivers, and home care workers.

Caring Today – a magazine and website—provides useful advice and how-to articles on range of caregiving topics.

Google the National Participant Network – NPN

StrengthforCaring.com – an online resource and community for family caregivers.

WellSpouse Foundation – national nonprofit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled.

As a geriatric care manager in Nashville, TN, I try to help families by referring them to internet resources such as your blog, support groups, non medical home health care providers and hospice for example. It takes a true caregiver to know one and understand another true caregiver’s real needs. I applaud- LOUDLY with gratitude, your efforts to help others, and if by some chance you get some ease through the heartfelt love and thanks of others, than it’s a great-good thing. A God-thing!

elledgecasemanagement.com

ijwoods - July 2, 2012

Thanks for the great list of resources Dawn. My apologies for taking so long to get you visible on the site. I found your comment sitting in my spam folder! I’m glad I found you. – IJ


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: