Breast cancer rant

I sat on the 4th floor in the oncology ward wondering why so many of the women like my aunt were not diagnosed sooner. My cousin died at 50 of breast cancer leaving 2 boys one in high school and one in his first year of college. With all of the technology we have in this country, why can’t we develop a technique to effectively see through the tissues of women’s breasts. We have lasers that can see through concrete in war but we can’t develop a technique to see through breast tissue?  Yes more women are surviving breast cancer but if we could detect it sooner many more would. Is it that women get the short end of the stick when it comes to prevention and treatment of their diseases. I mean after all when viagra came out most insurance companies covered it. Yet, many insurance companies did not cover birth control pills. OK let’s think about this. We will give pills to men so they can have sex, but not cover women so they won’t have an unwanted pregnancy with all those men having sex because of viagra. For a long while, we did not research symptoms that women exhibit before a heart attack.  Now we know they have different symptoms than men. But not until we finally did research on women. At least in the case of my aunt, the effects of the treatment were many times worse than the cancer. We can build technology that does almost anything but:: not one that can effectively see through tissue. I am angry. I believe that if more men got breast cancer, we would see the technology developed to catch breast cancer sooner. Maybe I wrong but I don’t think so. The most compassionate doctor I met during my hours and hours of being in the hospital as my aunt’s caregiver was a female urologist. She was not only compassionate, but she was willing to have an honest discussion about making hard quality of life decisions. My aunt’s doctor never, until the last month, broached the subject of stopping treatment because it was harder on her body that the cancer. He never discussed the prognosis for the 8 months I was with her until 4 days before she died  when he told her it was time to check about hospice. Too many women are not being diagnosed with breast cancer soon enough. I know that after watching what my aunt went through to live mainly for us, I will never complain again about hard times. But I also know that as a women and a person who has lost 2 family members to breast cancer in 3 years, I want to know why we can’t use some form of the laser technology used to see through war bunkers to identify aspects of breast tissue more effectively. Is there anyone else out there that feels the same way?

Caregiver sitting can lead to low back pain

I am back. Yea. For the first time since my aunt died and drove my last 14 hour trip from WA, I believe I am beating my depression and fatigue. Over the last 3 days, I have worked in my garden for 5-6 hour stints. I have gotten up by 8:00am every morning. I haven’t felt this alive for 10 months. But after crawling on my hands and knees putting 15 lbs of organic fertilizer on my hedges, roses, and other plants, I can barely straighten up. Prior to my primary caregiving where I spent most of my time sitting with my aunt or driving 14 hours one way, if I had done the same type of work I would have had some back pain the next morning but it would subside by the afternoon. This is not going away. As a physical education professor, I know that the sitting too much, the lifting, twisting, and turning associated with caregiving could impact muscle tightness, posture leading to low back pain. But stress can also lead to low pack pain as illustrated in an article in Family of Love Ones Magazine.com. The Revolution Health Website provides suggestions for ways to minimize the impact of the sitting, lifting, and twisting one does while caregiving. Another good site that gives specific ways to lift, move, and transport your care receiver is that of Changi Hospital. I highly recommend that during your caregiving hours you practice the following guidelines of Spine Universe. After reading all of the suggestions, you might say, “I don’t have time. I don’t think about it.” But if you are in pain, you will not be able to be as effective in helping your care receiver move about, nor will you will be able to maintain a positive upbeat attitude when trying to shore up the emotions of your care receiver. And as I have found out, after you are done caregiving, you may be unable to handle your everyday chores and enjoy those things you love to do like garden, hike, pickup your children, grandchildren, or just sit and watch the sunset without chronic pain. Besides the chiropractor and massage therapist, I am going to consult with a pilates instructor who is trained as a physical therapist. Wish me luck. I still want to climb Mt Rainier in August and right now I can barely get off the couch. Help others and let us know how you have managed your back pain. But hey, I am making my way back emotionally. That is a great start. Just in time to start moving into the role of caring for my aging parents. I will be much more prepared this time.

3 Things I learned about family relationships when caregiving

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?

My aunt’s dignity

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.

Caregiver Stress Syndrome

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.

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