Factoring in caregiving to loss of productivity cost related to cancer

According to the Matria Healthcare website, a recent study shows that the loss of productivity due to cancer in 2000 was approximately $146 billion. However, if you factor in caregiving and household activity and it increases to $232.4 billion. The expectations are that this amount will climb to over $300 billion by 2020. These are astonishing numbers. This study helps to make a case for legislation to provide caregivers with some form of help; preferably a combination of support such as preventative medical, mental, and financial.

Caregiver needing care

Well it has been a while. I went up and got the two kids Cody (10) and Elizabeth (6) so that their mom could continue tests to determine her complete diagnosis. These kids have been through so much in the last year. Their Grandpa died from a complication from surgery in March 2007. Then within 21/2 months their Grandma was diagnosed with breast cancer for the second time. She died in December after their mother, their aunt, and the rest of the family including them, spent as much time as possible taking care of her. Their father hurt his back around March and then was diagnosed with spinal chord tumor which was operated on in early May. He was to be off work for at least a year because he lost much of the feeling on his right side. Within 5 or 6 weeks, their mom felt a lump in her breast and then she was diagnosed with breast cancer but not yet given the battery of tests to determine the severity. By the time I picked up the kids in early July, she had decided no matter what she would have a double mastectomy due to the family history of her mother’s death and our cousin on the same side of the family. I wanted to bring the kids down to CA for a few weeks until my cousin and her husband could deal with the changing roles and life issues without the kids. I wanted the kids to have time away from words like “cancer” “surgery” and the yelling that was going on because of the stress of the year. My goal for our time together was to get them to express their feelings about their mom, dad, their relationship, and their grandma’s death. But as the diagnosis got worse and worse, I realized I needed to prepare them to help take care of their house in a way to minimize germs for their mom as she went through chemo and possibly a few surgeries. It may me think about the challenge of being the caregiver (my cousin to her children and husband recuperating from major surgery) and now facing a disease that has killed your mother and your cousin knowing that you will move from full time caregiver to caregiving when you feel well and being cared for by those you feel a responsibility to care for. It was definitely hard enough to care for Cody and Elizabeth without me working, feeling ill, or stressed by other life factors. What must my cousin feel. She helped care for my aunt and knows both the pain of caring for someone who had always cared for you and watching that person lose her dignity. When we think of caregiving, we typically think of an elderly person or someone with a chronic illness or disability or a illness leading to death but what about the caregiver that will have to accept the care of his/her children or spouse that she/he had always cared for. The pain of not being there for them because you are too tired. The sadness associated with not being able to seem upbeat and spunky during the happy times of your young children. I can only imagine what she is going through. She has Stage 4 breast and Stage 4 bone and a possible spot on her kidney. What type of help does a caregiver like my cousin need? Those of you out there that have witnessed this phenomenon how was it handled. I know my cousin is still working and trying to do as much as possible for her children. She is upbeat and has a positive attitude but her situation is so very different that caring for a middle aged person with adult children. My cousin is a great mom and right now she is only concerned about how this is effecting those she has been caring for, not how she is doing. She is much like her mom. When I was taking care of my aunt she tried to keep most of the family away because she had always been the rock so she wasn’t sure that everyone could handle the chores needed. She found out that all of us rose to the occasion. But how do children that have seen so much death in the last year, rise to the occasion and not have it effect their school work and relationships with others?

Caregiver again?

I was just recovering from the fatigue and depression that I felt after caring for my aunt as she lost her battle with breast cancer. And now, my cousin (my aunt’s daughter) was just diagnosed with breast cancer (one week after her mother in law was diagnosed with lung cancer and 6 weeks after her husband had major spinal chord surgery). She has 2 children, works, and has been taking care of her husband and his mother. From May 2007 to Dec 2007, she helped care for her mother. Now life has dealt her a big blow. I have volunteered to take her children for 2 weeks while she has more tests before a double mastectomy. This time I have to make sure I take care of myself because soon I will have to take care of my elderly parents. More importantly, I must be mentally and physically healthy enough to be there for my cousin and her family. Hence, I will drive the 14 hours to pick them up when I do not have to cancel any of my previously scheduled appointments. I learned from the first time that if you don’t take care of yourself while you are caregiving, you may end up needing care yourself.

Joys of caregiving

I knew I was losing my professor position when my aunt told me that she was diagnosed with cancer again. She had just lost her husband after he did not recover from a surgery a few weeks before she found out. There was no thought about how I was going to get back and forth between CA and WA. My life had revolved around teaching and my dogs. I never thought about how I was going to deal with the dogs. My aunt did not have a yard. I just knew that I wanted to make sure that my aunt had someone to talk to, someone to do her yard that loved that task as much as she did, someone who knew her likes, dislikes, and demons.

We were always exchanging tips about gardening. We both loved our riding lawnmowers. That was one of the things she lamented about. She got a brand new riding lawnmower just a month before she began feeling bad. She would point out that I had more hours on it than she. One of my joys was to make sure that her yard was always kept up. She could look out the window and see could still see the results of her 4 years of labor on a 4 acre piece of land. With my cousins, we even did some work she wanted to do in the future so we could discuss the future. Even though, I knew; she knew. But we never discussed her dying directly. We just talked about how others in the family were not getting how serious it was.

It made me happy that she did not have to feel guilty because I had to take off work. I did not have any. One of the biggest joys for me was that I could pay her back for her love, respect, and friendship that she had shown me all my life. She also knew that I could take her negativity, her hours of silence, and her frustrations because I knew her so well. I knew it wasn’t her. It was the disease. And as hard as it was and it has been, my biggest joy is that she died at home with family on her terms, not with strangers or in the hospital.

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?

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