Caregiver Stress Syndrome

March 10, 2008 by  
Filed under Archives, News

For the last 3 months since my aunt died, I have been extremely fatigued, moody, and not interested in much except the dogs. I know that all the driving over the 8 months was stressful and made me stay awake for 24 hour stints sometimes 2-3 times a month besides my live-in caregiving. I am trained as a sport psychologist so I know that I have been mildly depressed. I also gained about 15 pounds in my midline which I also know can be due to cortisol from stress. My immune system has been compromised as I notice that the smallest of scratches is hard to heal. I did not eat well while caregiving and did not notice until the last few months that I was stressed. I never thought about my own health at the time. As long as I could stay focused, positive, and wakeful at night to listen for my aunt I just figured I would catch up on my sleep and relax whenever my role was done; however it might end. But that has not been the case. I am still fatigued and having a very difficult time losing the weight I gained because I don’t have the energy still to exercise. People need to realize that they could get chronically ill from caring for a family member if they don’t care for themselves. Weight gain can lead to diabetes, heart disease. Lack of sleep has horrible repercussions. I do believe that my inability to “just bounce back” is due a lot to the side effects of sleep deprivation. The information on caregiver stress discusses many of these issues. We are no good to anyone if we don’t care for ourselves. Some of us still have elderly parents that will eventually need caregiving and we must be prepared for that role. At least I have learned from experience that my health is equally as important as the family member that I will be caring for. I assume that this type of syndrome probably does not only affect family caregivers. I have spoken to social workers and they believe that many paid caregivers see their health deteriorate due to the responsibilities associated with long term caregiving. It makes me wonder if there should be a special caregiver health insurance because many people quit their jobs or don’t have jobs while they provide care to family members.

There is a debate going on as to whether the medical community should officially acknowledge this condition as Caregiver Stress Syndrome (CSS) as shown in the CNN link below.

The National Women’s Health Information Center provides an excellent article on different aspects of Caregiver Stress:

If you know someone who is a primary family caregiver you should provide them with some information about the problems associated with lack of sleep, bad eating habits, prolonged stress, and lack of mental and physical stimulation. I found that I kept my mind busy with the DS Lite Brain Games. They were frustrating but kept me away from the TV and my emotionally draining thoughts.

Becoming a caregiver

March 10, 2008 by  
Filed under Archives, News

When I was 18 my grandfather was diagnosed with cancer. I visited a few times and I could not handle seeing him as he shrunk and became someone else. I was asked to give him shots because I had learned to give shots on animals. I could not. After he died my grandmother told me that he was always wanting to know where I was, why I was not coming. She was disappointed in me but understood. She had cared for both of her parents until they died. I made a promise then that I would never runaway from a person who was in need, especially someone in dire need of support like my grandfather. Over the next 30+ years, I kept that promise but was never tested like I was when my grandfather was sick. When I was growing up, my grandfather was always watching over me. He was always nice to me. Without my grandfather, my grandmothers, my great aunt, and my aunt as role models and protectors, I may not be who I am today. So when my aunt called to tell me that she was diagnosed with breast cancer again, I knew what I had to do. Not because I had to because of my promise, but because she was my rock, my loving, caring friend.

She had just lost her husband after a surgery just 2 weeks before she was diagnosed. It was unexpected and she was drained after driving back and forth for 7 weeks to be at the hospital with her husband every day. I knew that she was having trouble dealing with everything that she had been dealt in 2 1/2 months. But she never complained and she continued to be the center of her daughters and grandchildren’s world. When she called, she reminded me that we knew this could happen again. She had been estrogen positive and lots of lymph nodes were effected the first time. She had been caregiving her husband for years. But it was intense for 6 or 7 months prior to her diagnosis. I now know from doing some research that many caregivers become ill because they do not take care of themselves. Stress can lead to all kinds of physical and mental problems as well as disease. She always put others first.

I made my decision as soon as she told me. I had known when she called in April that I was losing my job as a professor and would be unemployed in May. I had focused so much on my teaching and the students that I did not publish enough (another story). I knew as soon as I hung up the phone that I was going to go to WA after graduation and do whatever she needed from yard work to medical care. I had made the decision that I would be a primary caregiver. I was lucky in a way. I know that many people become caregivers out of circumstance, not choice. I truly feel for those who end up being family caregivers due to unforseen circumstances. Actually, I have been put into that role with my parents in the last 3 weeks. The entrance into this caregiver role seems so different than when I chose to put my life on hold to be my aunt’s caregiver out of love and respect for one of the most important people in my life.

I had no idea what being a caregiver meant but I was committed to making sure that my cousins did not have to quit their jobs and that she did not have people taking care of her that she did not know. My role ended when she died at home about 3 months ago. I will never regret my decision. I am a different person because of the decision. But I wonder how I would have felt if the role lasted longer or I HAD to be a caregiver because of family circumstances. Not just a caregiver but a primary caregiver who spent nights listening to a baby monitor and most days silently communicating through body language and room atmosphere over the drone of the TV.

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