Dr. Ducharme’s Blog for January 23, 2012

Last week, I talked about the gender differences identified in the American Psychological Association’s (APA) Stress in America Survey. Another major finding of the study was that caregivers are not only more likely to experience stress than other Americans, they also report it at higher levels.On a scale of 1-10 where 10 is a great deal of stress, the mean level of stress reported by caregivers was 6.5 as compared to 5.2 by the general public. 55% of caregivers say they feel overwhelmed by the amount of care their chronically ill or aging family member requires. Caregivers also were more likely to say they were utilizing less healthy techniques to reduce stress (smoking, drinking, overeating) and not getting enough sleep. The latest data demonstrates that caregivers are more likely than people in the general public to rate their health as poor and point to personal health concerns as a significant source of stress.

For those of you taking care of an aging or sick relative, this is not surprising. You know what you live through every day as you try to manage all your responsibilities. My sister-in-law, God bless her, cared for my mother-in-law for six years. In essence, she gave up a good portion of her life and certainly her freedom to go away for several years before my mother-in-law died. Simple things, such as a chair lift for Mom on the stairs, made it really difficult for her to do something as simple walk up and down the stairs. And we won’t even mention the discussions about whether my sister-in-law was wasting money by buying paper plates or a particular product. The physical care, baths, medication management and simply living with your mother again can clearly cause stress.

Over the last few months, my neighbor and friend, a wife and mother of two children, has been catapulted into the role of caregiver for her mom. This fall her mother seemed fine. Then, she seemed to just be a bit “off”. She didn’t seem to have the same connection or “spark”. Within a few days she developed increased symptoms making my friend think her mom had had a stroke. Within hours and a trip to the hospital, her mother was diagnosed with a glioblastoma. And my friend’s world changed forever.

Glioblastoma’s are a very aggressive type of brain tumor. Treatment involves surgery, radiation and chemotherapy and steroids. However, because of the tentacles which are typical of this type of tumor that spread into surrounding brain tissue, complete removal of the tumor is almost impossible. Even with treatment, she was told the prognosis was poor. Her mom would probably die in about a year. My friend quickly learned that many of her mom’s behavior changes were due to the swelling in her brain. It became evident her mom could no longer live alone. She moved in with her daughter. My friend’s children had to adjust to a grandma who was not always connecting to them. My friend suddenly couldn’t just turn to her mom and expect the help we all want from our mom’s on occasion, no matter how old we are. Within days and weeks her mom had memory changes and a loss of empathy. At times she became a bit obstinate or confused. Her coordination was off and she would just forget how to do things…basic things like get out of a bathroom stall in a restaurant. Fortunately my friend is agile and did what was needed. She climbed underneath to help her mom. And she tried to keep her sense of humor about it. Daily trips to the hospital for radiation treatments with her 3 year old in tow became her life. Conversations with doctors, different types of therapists, managing her mom’s business and financial affairs became her routine. She spent hours on the computer and phone researching the latest treatments for this horrible tumor, the same one that killed Senator Ted Kennedy. It was no longer easy for her to simply take an afternoon to bake cookies with the kids, go for a morning exercise class or even go to the store. She couldn’t leave her mom alone. Her mom would get stuck in the middle of an action, such as dressing or getting out of bed. These activities could take hours. As her mom continued to very quickly deteriorate she had to make a very difficult decision to put her in a nursing home.

You might think that would make life so much easier. Well, sometimes it does. But, daily treatments at the hospital are still required. A school snow delay presented a new challenge. Who would get her 7 year old on the bus since she had to get her mother to the hospital for radiation? Friends and relatives can help but only do so much. The other day my friend wrote me this note:
“No one has the slightest idea what I’m going through as a caregiver, and it really hasn’t changed much since we had to put mom in the nursing home.  I try not to complain, in fact I am very careful not to do so, but I have gone from caregiver to care planner.  Just today alone I have spent two hours in the phone calling physicians for a second opinion, doing mom’s laundry, driving her back and forth to radiation, undressing and dressing her for that radiation, helping in and out of the car and working with her on preserving some of the memory she has (simple techniques the neurologist taught me). All this with a 3 year old in tow”.

It is often very hard for others to really understand what caregivers go though. It is easy to criticize and blame. But we really need to recognize how difficult it is to totally care for an ill or elderly relative. If you have a friend or family member in this position, think about offering to help in some way. Babysit their kids so they can get out, stay with the relative for a few hours, drive them to treatment, cook a meal and offer lots of hugs and support. It is certainly clear why APA’s survey shows the very high stress levels of caregivers.

For those currently caring for a loved one, there are on-line support groups for caregivers of people with brain tumors as well as other issues. My friend indicated that www.braintrust.org and  www.care.org have been particularly helpful to her. Inman angels is a cancer support group that connects patients and caregivers with one on one support. Please check them out. And please consider sharing your story and experiences in care giving on this blog. It really may help someone else to hear about your experiences and how you handled it all.