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Caregiving: Stress Ending in Magic July 26, 2015

Posted by ijwoods in Blog+.
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Kris With Close Family Friends

I recently conducted a focus group with people who are, or have been, non-professional caregivers. The purpose of the group was to get some information to help with the development of a program that I believe will bring a great deal of comfort and strength to the caregiving community.
Getting together with a group like this can be quite an emotional experience. It goes deep. What was most surprising to me was the way we went from looking at what made caregiving so stressful to discussing how positively our lives were affected in the process.

The people in this group were varied in background and situation, but all had experienced caregiving someone dear to them. A few of them were taking care of elderly parents who were well into their 90’s. One had been the caregiver for her parents and 2 siblings losing them all in less than a year, while others were primary caregivers for a spouse who passed away from cancer.

The first thing I asked the group was what they found to be the most stressful part of caregiving. It was as if I had thrown a match into a room filled with gasoline.

For one participant, the biggest stress was battling her own ailments while caregiving. She was so tired from her poor physical condition that she was on the verge of collapse. To make matters worse, when she discussed this with a doctor he chided her and made her feel guilty. Realizing she had to do something she saved herself by taking a break for a few days while her parent was cared for in a hospice facility. This allowed her a chance to rest and regain some sanity. But even so, it was a struggle to allow herself this needed respite because of the guilt associated with not being up to the task of going non-stop.

Another person talked about the emotional drain. Being at the hospital at all hours and working through restlessness and exhaustion often made it a challenge to be at the top of his ability to give. “The hardest part was just trying to get some rest.” He told the group.

One commented, “Don’t ever say ‘It can’t get worse’, because it can and does. When others are asking if you’re eating, sleeping or getting a little time away the answer is ‘No, I’m not. I can’t.’”

And then there’s the coping with the person who’s dying. Many talked about the stress of working around their loved one’s moods, the affects of medication and a stubbornness to stay independent, even if it meant great danger. “These things will scar you. The dying person may hide their pain so as not to burden you. The person’s denial, can cause fights. I had to sneak on the phone to call the nurse and then go through more fighting as a result. But this is how it is.”

Another commented, “It’s like you are putting them through an inquisition – ‘what is your pain level? How much does it hurt?’ They will tell you everything is okay, it’s not so bad. Then you go to the hospital and once they are with the doctor or nurse you find out pain is worse than they were willing to admit.”

“I fear my mom could fall and be by herself.” one caregiver chimed in. “I see she is losing her memory but she doesn’t believe it and continues to do things that she promised she would stop doing. I worry all the time.”

Yet as stressful as all this sounds there was also something profound coming out of the experience. When I asked them what it was they learned about themselves I thought I had walked into a different room altogether. Here are some quotes from the participants:

One person begain with, “I was very strong to begin with but got stronger and stronger based on the strength I had developed while my wife was dying. Another said, “It’s a humbling experience. I learned about life.”

“I had been sitting with my younger sister for sixteen hours or more before she died. I helped put the body in the bag when the funeral home came to pick it up. I helped put her in the van. I felt a sense that I had done everything that I could have done for her and there was a beautiful feeling of relief. Although I’ve been a spiritual person I don’t know what other experience would have taught me that.”

“I have found a sense of humor. I see blessings and I am grateful for that. My mom told me while dying that if she didn’t have so many things wrong with her she’d be in great shape.”

“I came not to care what anyone else thinks, and to enact the decision at the time that I think is right, and to live with it. Just do it, and don’t worry about what everyone else thinks.”

“What an amazing gift to be able to be there for someone, it’s a privilege to do that for someone. It’s also a need, to be able to give of myself in that way.”

I always find there’s something special about having a conversation with other people who are caregivers or went through an end-of-life caregiving process with a loved one. It touches a nerve and everyone has so much to express. Perhaps through caregiving and being part of a loved one passing we become aware of the fact that there’s magic embedded in life that we take for granted. It’s when we see the process of someone close to us leaving this world we witness the magical power of nature that even doctors and our greatest scientists can’t fully explain. Death is uncompromisingly impartial.  We see it. We live through it, we don’t understand it – but it’s real. It’s not a movie. And it wakes us up. The only thing I’ve seen comparable, but with it’s own nature, is on the other side of the equation – someone coming into this world. A story that’s waiting to be lived, loved and told.