3 Things I learned about family relationships when caregiving

March 18, 2008 by  
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When I first arrived to my aunt’s house after her first chemo, my cousin said, “Did I tell you how glad I am to see you?” She is a RN who works in a health care environment, not with patients. She had been taking care of Barb on her own. She had just lost her dad 11/2 months prior to that day. It was unexpected and just 2 weeks before her mom was diagnosed with cancer for the second time. No one had time to deal with the death of a husband and father. I am a strong, coach like person who sees what needs to be done and either does it or makes sure it gets done. My aunt and I were only 11 years apart and very close from the time we were kids. I worshiped her when I was growing up and she babysat me. I was carried on the shoulders of her husband all through the wedding, I saw her graduate from college, she came to the ceremony when I received my PhD. We talked weekly. But I did not know my cousins very well. I did not visit much when they were growing up so as much as Amy was glad to see me, she had no idea how the relationship would work out. After all, she was a nurse and Barb’s daughter. I was a niece and knew nothing about cancer. After the first week, the honeymoon was over.

My aunt looked to me for support, more than my cousin. Mostly because she did not want her daughter to quit her job and make taking care of her mom, her life. Also, my aunt knew that I would always do what was best for her, not what I needed for myself. But my aunt was not herself she had just lost her husband and had not dealt with it. She actually seemed like she wanted to be with him.  She and I had a telepathic understanding that she would die but we went along with the thought of getting better for the rest of the family. In just the first month, these are first three things I learned about the effect caregiving has on relationships between family members.

First, people become territorial. You spend all day with a person and all night hooked to them by a baby monitor and you become hyper vigilant and not able to give up your care. Meaning you are hovering over the person spelling you which makes them uncomfortable.

Second, everyone tries to hide their feelings so that the care receiver and others stay strong. Many times, I asked how my cousin was feeling and all I got was “how one would expect.” Instead of us all dealing with our frustration, fears, guilt, anger.

Third, the definition of good care by each family member is mediated by their experiences and their need to be needed.

These 3 things create conflicts because each person involved in the primary care of the person begins to take “ownership” of the care and due to the lack of open communication a tug of war exists that creates distress for the care receiver. I know that I am basing this on my experience but I would assume that this happens frequently because in our society we are called “whiners” when we vocalize our fears, frustrations, and ask for help. I could easily see this happening in situations involving caring for elderly parents. Has anyone experienced these situations?

Inevitable role of family caregiver

March 17, 2008 by  
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If you have parents, aunts, uncles, sons, daughters, a spouse, or a friend, you probably at some time will be either a primary caregiver or a secondary caregiver. Those of us who are in our 50’s are in what they call the “sandwich generation.” as explained on the Carestation Blog. We are sandwiched between taking care of our children or grandchildren and our aging parents or others in their generation. If you are a woman, you have a greater chance of becoming a primary caregiver according to statistics reported in a report on The Family Caregiver Alliance Site The statistics sited are numbers from a few years ago. With baby boomers like me reaching their late 50’s and my parents moving into their 80’s, those statistics cited will grow exponentially. Moreover, my sons will then be more likely to move into the role of primary caregiver for either myself or my parents. This means that not only are we responsible for researching how to get our own affairs in order, but also on providing good care for the ones we love and care for our selves. I did not do that the first time I was a primary caregiver, but I will as I move into the role of caring for my aging parents. How many of you were prepared?

Dog Days

March 15, 2008 by  
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I had a good day yesterday. One of the best since my aunt died. I drove 4 hours to agility lessons for my 2 younger dogs. We trained for 2 hours. The dogs did great. That made my month. But with the 15 lbs. I gained in my stomach while caregiving, I barely made it. I was huffing and puffing the whole time. Most of the 15 lbs. is in my stomach. Unless I tuck my shirt in no one can tell I gained the weight. Everyone that becomes a caregiver needs to make sure that they find ways to minimize the stress and frustration that comes naturally with the duties associated with primary caregiving. My doctor has told me that because I was so healthy prior to gaining the weight from stress that I should exercise and eat what I normally do. If I can’t seem to get it off, then I must go back and see him. He and I both know that I still have a mild case of depression but if I can pick myself up I will be OK. It makes me so sad to know that around 48 million people, according to the AARP Magazine (Dec2007), could be a victim because they gave of themselves.

My aunt’s dignity

March 13, 2008 by  
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When I first got up to my aunt’s house, she was unable to get into her bed without help getting her legs up and then scooting and rolling her over on her side. She appreciated the help but you could see in her eyes that she felt helpless and frustrated. She always apologized for the effort it took to get her to bed. We had to put a platform so she could sit on the bed to help because she weighed over 180. She was the rock for the family and she could not even lay on the couch without help at times. At that point, she believed she was going to get better so I felt her self worth was as intact as possible. But as the months went by, her body language, silence, and unsmiling eyes said it all. I remember clearly when we went to the Social Security office to find out why she was not receiving her husband’s survivor benefits. She was in the wheelchair with me pushing, she did not have any hair, and she looked pretty bad. The woman looked down at her from the counter and called her mister even though the woman had her Social Security card in her hand. I corrected her. From there we had to go to the military base to an office to discuss the same situation. The man without any thought told her that they had her as dead. I wanted to punch him. That was the last time we ever worked on that problem. I mean what must it have felt like to know you are probably dying, you look like your dying, and this gentleman bluntly said “our records have you as dead.” She responded, ” Obviously I not dead yet.” These are just a few examples of not being cognizant of how we must be the ones to help maintain the dignity of our family members we care for. There is a great article in the BMJ 2007, July on “Dignity conserving care.” Let me know what you think.

Nutrition for cancer patients

March 11, 2008 by  
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One of the hardest things for me as a caregiver was trying to make sure my aunt ate and drank. They thought that the cancer in her abdomen was metastasized breast cancer. Hence she was always feeling bloated, full, and extremely uncomfortable. It was not conducive to getting her to eat and add to the discomfort. She also had the usual problems such as loss of taste, reactions to the chemo leading to occasional vomiting and diarrhea. At first she was on a special diet because of her reaction to chemo. That eliminated most of her favorite foods. I would do everything I could to find something that was on the list and that she would eat. I would let her cheat if she would eat most of what she was supposed to. I felt like a drill Sargent getting her to drink enough water.

I am somewhat knowledgeable about nutrition so I had a pretty good idea what she should eat. One day she told me that she wished she had eaten better over the years. But her tastes were not necessarily associated what was good for her with her disease. I would have to say I felt guilty about being a nag about food and drink. It was one of the most difficult parts of the role as caregiver. On one hand, you see her in pain and discomfort and want to just let her eat what she wants. On the other hand, you hope you can help her to develop a meal plan that helps maintain her strength so she can fight the disease. I would go to the grocery store and go down Every aisle to find things that she normally liked or we had not tried. I remember toward the end when she was drinking protein based drinks, I bought 5 or 6 kinds and we had taste tests. I still have a Boost sitting on my counter that I accidentally brought home.

For those of you that are dealing with a similar situation, here is a good article on nutrition for cancer patients on Caregiver.com; Today’s Caregiver Magazine. Not only do we have to educate ourselves about how to maintain the health of our family members through nutrition, we also have to understand the relationship between food and emotions; ours and theirs. That will be another discussion:)

Caregiver Stress Syndrome

March 10, 2008 by  
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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.

http://www.cnn.com/2007/HEALTH/conditions/08/13/caregiver.syndrome/index.html

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

http://www.womenshealth.gov/faq/caregiver.htm

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  
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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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