Support, Advocacy and Caregiving

6

December 18, 2014 by Jean

Recently, much of my time and energy has been absorbed by the health issues of a close friend. After several years of vague symptoms and declining health, my friend had a medical crisis in late June that took her to the emergency room by ambulance. In the months since, as her diagnoses and various types of medical care have unfolded, I have realized that we rely on others for three kinds of help when we are ill: support, advocacy, and caregiving.

I have served as my friend’s primary support person during these months, providing her with both practical and emotional support. Emotional support has included being available for listening and hand-holding and being a supportive presence at her many doctor’s appointments and medical tests. Practical support has mostly consisted of  providing transportation to medical appointments. When it became clear that my friend would need major surgery, my role as her primary support person ramped up as I helped her get legal papers in order (updated will, advance directives and medical power of attorney, financial power of attorney), stayed with her the night before the surgery and provided early morning transportation to the hospital, spent a long day and evening in the surgery waiting room as the person the surgeon and other medical personnel communicated with about her condition, and contacted her family and friends to provide information. During her time in the hospital, I spent several hours a day by her side and also went by her house once or twice a day to feed the cat, pick up mail, put out trash, etc..

During my friend’s days in the hospital, I found that I needed to take on a new role, that of advocate. People who are very sick are too weak and feel too vulnerable to advocate for themselves. And, even in the best facilities (e.g., those with 5-star Medicare ratings), staff are overworked and things can easily fall through the cracks. Those who don’t have someone present to advocate for them get poorer quality care. A simple of example of this came when my friend was discharged from the hospital to a rehab facility. Her room was missing the kind of recliner chair that she needed to be able to sit up out of bed (although there was a space in the room where such a chair would normally go). Without a recliner chair, she found herself confined to bed, a setback given that the hospital staff had wanted her out of bed as many hours a day as possible. At the time of her admission to the rehab facility, I requested the chair. When I spoke with her on the phone the next day and found that the promised chair had still not arrived, I made phone calls to facility administrators to exert pressure on them. The next day, I recruited the occupational therapist and the doctor to also make requests for the chair. (In short, I was a royal pain in the butt!) Even with this kind of vigorous advocacy, it took 48 hours to get the recliner chair installed in her room.

As my friend gets stronger, I’m finding that I need to back off from being her advocate and encourage her to advocate for herself. When I visited this weekend, for example, she was feeling very frustrated that she had still not been given needed pain medication more than an hour after she had rung her call bell and asked for it. I reminded her that she had been cleared by physical therapy to move around in the corridors outside her room and suggested that we walk out to the nursing station where she could ask about the pain medication. It turned out that the aide who had taken her request had gotten distracted by another call and never passed it along to the nurse. The nurse apologized profusely and provided the pain medication immediately – and my friend gained confidence in her ability to assert herself (something she is normally very good at).

I have not yet been called on to provide any kind of significant caregiving for my friend. The original plan was for me to stay at her house and help with her care for as long as a week after her discharge from the hospital, and I’ll admit that I was relieved when the medical and social service staff at the hospital decided that she was too weak to go home and discharged her to a rehab facility instead. I may stay with her for a night or two when she goes home next week.

All of this has given me new respect for those who provide caregiving for loved ones for weeks, months, or years at a time. It has also made me realize how important it is to provide help (including some respite caregiving) for those who take on the caregiving role. Just providing intensive support and advocacy for a few weeks has left me feeling both emotionally and physically exhausted. I remember the point (more than 10 years ago) when my father, who was dying of cancer, became too ill for my mother to take care of at home; in her eighties, she was not strong enough to provide the kind of physical care he needed. At his own initiative, he was admitted to a long-term care facility where he spent the last seven months of his life. During those months, my mother spent every afternoon at the nursing home, providing support and advocacy for my father. My recent experience has given me new appreciation of just how exhausting those months were for her and why her words when she called to tell me my father had died were “It’s over.”

At some point, all of us are likely to need support, advocacy and caregiving as we deal with our own health challenges. I hope that if I provide that help to others as I am able, I can contribute to building a set of attitudes and relationships that will make the same help available to me when I need it.

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6 thoughts on “Support, Advocacy and Caregiving

  1. Jean R. says:

    Boy, can I relate to this post having been my husband’s one and only caregiver for 12+ years after his stroke that left him right side paralyzed and with no written or oral way to communicate. I can count on my fingers the number of hours that I actually spent by myself in those 12 years. (The more disabled a person is the less likely that an extended family or friend is willing to give a family caregiver a few hours of respite, and having a stranger come often isn’t worth the worry you have while your gone when the person being cared for can’t talk.) Things looked like they were getting better in the public sector to give families and caregivers some help but budget cuts have taken many of those hopeful programs off the table before they even got off the ground.

    That being said, one of my biggest worries in life as a person with no children is that I don’t have the kind of friend that you have been to your friend. Those without advocates in the healthcare system do get the short end of the stick. I’ve seen it many times, not just with my husband but also when his mother was in a nursing home for many years and when I shared the care of my father for five years. One example I can share happened a month after my husband’s stroke and he was still in a rehab place. I came in and found him lying stark naked without the curtain being pulled so anyone walking by could see him. Worse yet, it took my ten minutes of looking to find anyone to deal with the issue…that’s the kind of things that happen that drive spouses to spend long days at hospitals and nursing home.

    I hope your friend is doing better soon. If she has family, don’t let them take advantage of you, using you an excuse for not to stepping up to the plate themselves. I’ve seen that happen many times. Adults kids often have a hard time making that transition of having to look out for a parent—the role reversal. Sometimes they need to be pointed in the right direction as their parent starts to need help from them.

    • Jean says:

      Jean, I thought of you as I was writing this, and it gave me new respect for the kind of caregiving you did for Don. I have a much better understanding now of just how socially isolating this kind of labor of love can be — because it just doesn’t leave you much time and energy for relationships with other people.
      My friend is, like me, unmarried and childless. She does have siblings and some first cousins, but all of them live hundreds (or, in some cases, more than a thousand) miles away and most have serious health problems of their own. So, no, I don’t feel as though I have been taken advantage of.

  2. The aging process is certainly not for the faint of heart, and I don’t think most people have a support system that can remain in place for long term situations. Even those of us with adult children are realistic that they would much prefer to spend time with their children than dealing with their aging parents and their related issues. You have done a great service to a friend, and it is something that could never be valued in dollars because it exceeds that calculation.

    • Jean says:

      Judy, I should note that my friend and I have been in this role for one another before when each of us had major surgery in the 1990s. I hope to have added to my “good karma” account.

  3. I wonder and worry about this as I grow older Jean. I am dealing with this very issue with my mother who is in and out of the hospital and rehab as we try to find out what is wrong and how to help correct it….and we experienced 5 star facilities that had to be reported to the State (she is out of state) for violations where she was not given proper or adequate care….we still ride this roller coaster but without my sister, who thankfully is a nurse who works for the state health care, there everyday, you are correct that the level of care does diminish.

    • Jean says:

      Donna, I think it behooves all of us to think realistically about these issues and to try to make some kind of contingency plan. I was encouraged that my friend Atsuko, who died during the summer, managed to have what I consider a ‘good death’ at home — despite the fact that she was unmarried, childless, and an immigrant whose close family were all thousands of miles away in Japan — by relying on a combination of friends and paid help.

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I am Jean Potuchek, a professional sociologist who has just stepped into the next phase of my life, retirement, after more than thirty years of college teaching. This blog is about my experience of that new phase of life.

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