It may be interesting to some to note that my first two initial blogs were composed while sitting at my mother's bedside while she has been very ill recovering from a radical nephrectomy because of renal cancer from which she has incurred a few complications. I live in Charlotte, NC where my practice is and I have a brother here in Charleston, Rocky, a sister in Atlanta, and another brother in Connecticut. We had a sister who lived about a mile from my mother who died suddenly this past December. My brother in Charleston and myself have basically been providing most of her care although my sister is coming this evening and my other brother next week. In the meantime, my brother, Rocky, took her to all of her MD appointments prior to the surgery, and I have been staying most nights and days at the hospital. However, being human, which trumps being a psychologist, I left late the other night to get some sleep away from the hospital and my brother took off work and stayed all yesterday, to provide me some much needed relief.
Why am I relating all of this? After all, I have been planning my blog for many months, and we only found out about the renal cancer a few weeks ago. I think it is important for people to know that psychologists are people first. I have worked with many people over the years who have been diagnosed with cancer and was able to reassure my mother that it is normal to feel anxious and desperate to have a foreign mass removed and to help her through the weeks prior to the surgery and during this time after surgery. However, having such skills does not mean that I am not immune to my own feelings of exhaustion, fear, and anxiety about her health. I am also including this because this situation illustrates the fact that most people at some point in their lives will deal with illness and pain in a loved one or themselves and could benefit from the findings of medical and health psychology as a field and by the skills possessed by medical/health psychologists in terms of coping with such difficult situations.
As a caregiver, one is told to "take care of yourself". Unfortunately, this is not built in; there are often not enough resources to enable this to occur, time is a huge problem, and the person who is sick is the usual focus of care, not the caregiver. The caregiver often feels guilty for taking a break or taking care of him/herself. This is often exacerbated by the naked need of the sick individual who is frightened of being left alone, either at home or at the hospital and it is very difficult to say 'no' and 'I need a break'. However, if the caregiver does not take care of him/herself, s/he will not be able to do a good job taking care of the ill individual. Further, resentment builds. Resentment results from unmet needs and these needs have to be met by the caregiver; one cannot expect someone else to magically meet them. Ask for help from others for a break, hire respite care, allow yourself to go out to a movie or dinner with friends. I promise that such activities can actually make a person a better caregiver in the long run.
Effective communication is also crucial. This includes communication with doctors and other healthcare providers, including writing down questions that one wants to ask the doctor and the answers that are provided. People usually think that they will remember their questions and the answers but they seldom remember them, and then often inaccurately. It is also important to consider clarity of communication. Most doctors speak their own arcane, professional medical language which is incomprehensible to most laypeople. I want to stress that it is okay and appropriate to ask the doctor to speak in a manner that is understandable to you as a layperson. This will not make you look foolish or 'stupid'. Think in terms of an auto mechanic or electrician. They also have their own professional languages and they have to clarify the problems to the laypeople they deal with as well. Communication issues are also important with family and friends. When someone feels ill or in pain, there is a tendency to either respond irritability and to take out frustration on family members and friends or to withdraw from them. These are the people who love us and are potentially the best support we have in difficult circumstances. Alienating them through anger or withdrawal is not in anyone's best interest and can lead to many problems down the road. After nearly 30 years in this field, I have never seen a marriage break up simply because of illness, pain, or disability; but I have seen many break up over abusive, demanding, nasty, hostile, unreasonable, and aggressive behavior which has been blamed on illness and pain which as far as I am concerned is an excuse, not a reason. This often calls for professional intervention, such as by a medical/health psychologist.
Healing takes time and patience. Pain and nausea are the 2 worst physical sensations that we humans can experience. There are also psychological consequences of feeling ill, including depression, anxiety, a sense of hopelessness that one will ever feel better, and general psychological malaise. A lack of motivation can also become problematic such as unpleasant diets or no food for days at a time, walking down hospital hallways when exhausted, needles and medications, and having to undergo unpleasant medical tests. Serious surgeries involving spine surgeries or open, large abdominal surgeries lead to their own unique problems as well, and recovery requires engaging in behaviors that are often resisted such as walking, walking, walking and staying out of bed as much as is possible. Narcotic pain medications, general anesthesia during surgery, open abdominal surgeries themselves, and inactivity can lead to serious bowel complications. Avoidance as much as is reasonable of narcotic pain meds, and walking as much as possible are important but most patients are less than thrilled to comply. Of course, it is also known that controlling post-operative pain as much as possible also improves healing, but the downside are bowel complications. So there is a benefit to risk ratio that always has to be considered. This also pertains to managing chronic pain and chronic health problems as well.
Well, this has gone on long enough, but there is also so much else to say. So, later in another blog which I also hope will be shorter!
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