Today, as I attempted to organize and delete some of my computer-related files, I stumbled across many of my essays, research, and term papers written while attending DSU earning my BA and MBA (2000-2003). Finding these floppies was like opening the time capsule of my life.
While I will only occasionally write about this period of my life, finding my old assignments reminded me of just how completely immersed and focused I was with my task at hand--and how oblivious I was about the world in which I functioned. I sit here reading and re-reading my essays, trying to convince myself that this was my life for five and one-half years. Occasionally, I have days when I obsess about how I allowed Alzheimer's disease to forever change my comfortable life as I knew it: my marriage ended, my health deteriorated, my family disintegrated, my assets evaporated. Yet, as I read my essays, I realize that what I once thought of as my "sacrifice" was in reality my "blessing," and I would do it all over again.
No matter the class subject, Theology, Philosophy, History, Criminal Justice, Sociology, Economics, etc., I somehow managed to make a connection to Alzheimer's disease. It was easy for me to make these connections since I often make a few logical connections along with many, many illogical connections.
Here is one of those papers from November 26, 2001, one and one-half years before Miss B passed away...
A Meeting of Caring: An Alzheimer’s Support Group
Theology 262-Medicine and Morality
Dr. William F. Urbine
Date Due-November 26, 2001
Thesis
Few chronic diseases affect or devastate a family to the extent of Alzheimer’s disease. The patient can live for many years, slowly deteriorating and draining family members emotionally and financially. Fortunately, no family has to face this horrible time alone; there are support groups ready to reach out to everyone.
My Choice
My method for choosing a topic for this paper was a purely selfish one-I have attended an Alzheimer’s support group on a monthly basis since September 1998, when my step-grandmother was first diagnosed with this disease. Since October 2000, I have been her Legal Guardian. Caring for an Alzheimer’s patient can be frustrating, yet personally fulfilling at the same time. Conditions, attitudes and, most of all, behaviors change on a daily, sometimes hourly basis. The medical, moral, legal, and ethical dilemmas and implications that is associated with my step-grandmothers situation weigh heavily upon my thought process. I am fortunate though, that there have been others before me-others that can lend their experiences, support, advice and most of all, love and understanding. The support group plays an integral part of my life-a lifeline of sorts-for which I will be eternally grateful.
A Representative Meeting
Attending my first support group for families and caregivers of Alzheimer’s disease patients was an eye-opener. We hear so much about what the disease does to a family, often over months and even many years. Yet, I was pleased to see that such meetings provide more than a little comfort, as well as a continuous network of support outside the meetings themselves.
At this meeting, which, in 1998, I attended as a newcomer, there were four couples: Bill and Frances, Dot and Jim, Lynn and Frank, and Ralph and Mona. The facilitator was a member of a group of specialists whom would be treating my step-grandmother, which consisted of a Physician who specializes in Alzheimer’s, several resident Doctors, nurses, physicians’ assistants, psychologist, and social workers. At this particular meeting, the facilitator would be the psychologist, who holds a Ph.D. and who immediately welcomed the group’s members warmly and sincerely.
Beginning the meeting, the facilitator said, “All of you are going through perhaps the greatest family crisis of your life. I am not going to say there are any easy solutions, for there are not. However, you are all here seeking help, which you will get not only from me and the entire staff but, more importantly, from each other.”
She then assured that no one faces such a debilitating problem alone. She pointed out that families provide a “flexible structure” that goes on, regardless of good times or bad times. For adult children whose mother, father, or loved one is suffering from Alzheimer’s, bonding together as a family, and with additional help from others in the same situation is a tremendous aid to dealing with the problem.
Noting that all the caregivers in attendance were couples almost old enough to be my parents, I felt slightly out of place as a 36 year-old male. The group, however, made me feel quite at ease. The facilitator said that care giving could become a way of life, at least for a time. She shared with the group the story of a woman with teen aged children who were solely responsible for her mother’s care. This caregiver, named Anita, went faithfully to her mother’s home every day, cooking meals, cleaning the house, and seeing to her mother’s increasingly burgeoning needs. Then, Anita herself had to be hospitalized for a week, followed by a recuperative period. Anita’s two children, ages 15 and 13, moved into their grandmother’s house while their grandmother recovered. This kind of selfless giving gave Anita some peace of mind, though she still felt “guilty” because she could not care for her mother for more than a month.
When Anita’s mother deteriorated mentally to the point where time lost all sense and she could no longer remember even her own daughter, the strain on Anita (a single mother) and her children went almost to the breaking point. Ultimately, Anita’s mother had to be placed in a nursing home, where she remains, floating in and out of lucid thoughts-mostly out.
“My point,” the facilitator added, “is that Anita finally sought out a support group to calm her nerves and emotions, which were frayed to the limit. Anita had become short-tempered, and though her son and daughter understood, they were nonetheless greatly distressed by their mother’s yelling when chores weren’t done, or when grades in school had slipped. Yes, Alzheimer’s disease was affecting the entire family, not just the patient. Once Anita found that she could share her experiences and stories, the problem with her mother remained, but she was able to handle it much better.”
As the facilitator spoke, all in attendance nodded in agreement. Then the facilitator asked, “Why all you all here?”
At first, there was an uncomfortable silence, but then Mona volunteered an answer. “I guess we tried to take on all the responsibility for the care ourselves,” she admitted. “Suddenly, one day, Ralph and I found ourselves in a screaming match. We’ve always had disagreements, but never one so bad as that one. Suddenly, we stopped and just stared at each other. We realized what my father’s Alzheimer’s was doing to us emotionally.”
Frank added, “My wife and I figured we could go it alone, calling on other family members to help from time to time. Sure, my sisters cared for Mom a couple of days a week, but they don’t live as close to her as we do, so most of the burden fell on us. Now, Mom is completely unable to care for herself, and we had to put her…” He broke off, his voice choking.
“It’s okay,” the facilitator said, smiling slightly. “It’s okay to admit that you can’t do it all yourself. And that’s why you are here. You have just become part of an extended family.”
Then, Jim brought a lighter moment to the session, which helped get the discussion going. “You mean I have to buy birthday and Christmas gifts for all these people?” he asked in mock horror. Everyone laughed, and I could feel some of the tension leave the room.
“And for me, too,” the facilitator said, grinning. She added immediately, “How many of you have a parent in a nursing home?” Frank and Lynn’s hands went up. Frances said, “My mother is getting closer all the time.” She sighed heavily. “We don’t want to go that route, but Bill and I both work, and our children live out of town. We love Mother, and we don’t want to put her in a home, but we just don’t have the ability to care for her any more.”
Seizing on that point, the facilitator said, “Good! Not that putting your mother into a nursing home is an ideal solution, but you are both being realistic. You can still see her quite often and know she is being well taken care of.”
Mona and Frank then commented on the difficulty of caring for an Alzheimer’s patient, and Jim said he and his wife had found a good adult day care center for his father. It enabled him and Dot to care for their family’s needs and get a much-needed break every weekday. The facilitator nodded in agreement. She said that local “gatekeeper” services were important and therapeutic for both the victim and his or her family.
“Now,” the facilitator asked, “what do you do with your free time, such as it is?”
There was a general chuckle amongst the group, and all volunteered that they occasionally went to a movie or out to dinner, just to get away for an hour or two. Lynn hesitantly offered, “Sometimes, I just sit alone and meditate. It seems to help.”
“Great!” stated the facilitator enthusiastically. “You see my point? You can’t live in a vacuum, even in such a serious situation. You must make time for yourselves. After all, if you wear yourselves out, who will take care of the caretaker? Because if we just live within ourselves and let our problems overwhelm us, we become blind to the larger picture, including neglect of our children, families, even our jobs. Do it–find time for yourselves every day, alone or with your partner. I know it’s not easy, but it’s necessary for your emotional and your physical health.”
“Yeah, my kids are getting very resentful,” Jim said. “They’re teenagers, just like Anita’s children, and our family time together is getting shorter and shorter all the time.”
“You’re a member of what is known as the ‘sandwich’ generation,” the facilitator said. Your children need your care and so does your parent with Alzheimer’s. So, you and your wife are sandwiched in between responsibilities at both ends.”
“And giving me heartburn,” Jim added with a slight smile.
“Well, Jim,” the facilitator said, “help is not only on the way, it’s right here in this room.” She then suggested that all group members exchange phone numbers and addresses and promise to stay in touch in between weekly meetings. She also suggested get-togethers, whenever possible, at the group members homes, perhaps in rotation, on a semi-regular basis. “Most important is that you all stay in touch. Remember, help and empathy are just a phone call away.”
The facilitator then gave out some literature from the National Family Caregivers Association, a group that supports family caregivers through booklets and direct contact with caregivers. She urged the group to obtain the NFCA newsletter, “Take Care! Self-Care for the Family Caregiver,” which provides practical advice on caring for disabled older family members and also contains stories similar to those the facilitator shared and which some group members told during my initial support session.
Finally, the facilitator handed out a sheet with ten tips for family caregivers. They were:
•Take charge of your life and don’t let your loved one’s disease or disability always take center stage.
•Be good to yourself. You’re doing a very hard job and you need some quality time, just for you.
•Watch for signs of depression, and don’t hesitate to seek professional help when you need it.
•Accept help when people offer it and tell them what they can do to help you.
•Learn more about Alzheimer’s disease, for knowledge is power.
•Help your loved on be as independent as possible.
•Trust your instincts, which most times will lead you in the right direction.
•When you lose a loved one, grieve, but then allow yourself to dream new dreams.
•Stand up for your rights as a caregiver.
•Seek support from other caregivers. You are not alone!
“I cannot stress the importance of all those points, especially the last one,” said the facilitator. “I hope all of you will support each other and will be there for each other not only during this terrible time, but also in the future. Nothing dispels loneliness and a sense of helplessness more than the comfort of friends,”
She then invited the group’s members to enjoy refreshments and to share their experiences informally and at length. Having been given the direction in which to travel, the members rapidly became involved in animated conversations, which lasted more than an hour. The facilitator had given the group a continued, and for me, a new, sense of purpose and meaning during our time of trial.
What I Learned
Too often, we think we have to bear our burdens alone. That is not true. As I learned at that initial meeting, and have continued to learn over the past three years, there is not only professional assistance available, but also help from others experiencing the same situation–in this case, loved ones with Alzheimer’s disease.
I came from that first meting with new insights into the human experience and condition. That first group has evolved from an uncomfortable “why am I here” attitude at first to a better understanding of our situations and also with the comfort of knowing we have others to call on. A burden is shared, indeed, halved. As the facilitator said when we were all leaving, “We are asked to become part of something larger than ourselves. Together, we can make it happen.” I continue to attend an Alzheimer’s support group on a regular basis, and although the members in the group change at every meeting, I am still in contact with several members from that first group. My personal situation has not become any easier; my step-grandmother’s health has deteriorated, but she still retains the feistiness that continues to challenge me. One minute she willingly allows me change her Depends, the next she brutally attacks when asked to take her medication. But there is one thing I will always take comfort in – I am doing the right thing for her, and there are many who are there to support me–my Alzheimer’s support group.
References
In preparing this paper, I drew information from the following web sites, all of which deal with care giving and with Alzheimer’s disease:
Anonymous, “Caregiver Support Groups,” online at www.elderserve.org/caregiver.htm
Anonymous, “The Purpose, Direction and Programs of NFCA,” online at www.nfcacares.org/servicef.html
Anonymous, “Tips for Family Caregivers,” online at www.nfcacares.org/tentipsf.html
McLeod, Beth Witrogen, Care giving Support Strategies,” online at www.grandtimes.com/css.html
No comments:
Post a Comment