|My dad and his mom, at the library dedicated to her at her church|
Friday, September 30, 2011
Today marks my paternal grandmother’s 91st birthday, her first since she went on ahead.
My dad’s mom, whom I called Grandmom, died on April 19, 2011, after an extended illness, a series of strokes that took her independence, her vitality, her dignity, and finally her life.
When she first got sick and it became evident that she could no longer live alone, even with home health services, my parents moved her from her small hometown in Alabama to an assisted living facility very close to their house in Tennessee. At the time, Grandmom was sad that she had to leave her house, her town, her church, and her friends, but she trusted that my parents were making decisions in her best interest and that they would be there to take care of her, and they were.
A series of continued strokes pushed Grandmom along her downhill descent cognitively and physically in a relatively short period of time. We still got brief glimpses of the smart, fiercely loyal woman she was before from time to time, and in those moments it was humbling to see how happy she was to have us visit and how grateful she was for anything that was done for her, especially to my parents. My mom, her daughter-in-law for 43 years, so like a daughter to her, made sure that Grandmom’s hair and nails were “done,” as Grandmom liked them to be. She bought new clothes for Grandmom and did her laundry every week, and she read to her and talked to her about current events and family news, both of which Grandmom loved before she got sick. She decorated Grandmom’s room at the assisted living facility and later, after Grandmom declined even more, in the nursing home. Mom was the one who noticed if Grandmom’s feet were cold or if the skin on her hands seemed dry and then asked the staff to be sure there were socks on her feet and lotion on her hands during the times we couldn’t be there. She took care of Grandmom in many ways, and Grandmom and many others of us appreciated it more than words could express.
Dad played a different but equally important role during the last few years of Grandmom’s life. He was her connection to the past, the one she always recognized and the person for whom she always lit up. He was her bridge to socialization; he made friends with the other nursing home residents and the staff on her behalf and encouraged her to join in on the social activities scheduled at the nursing home. He loved to escort her into the main room of the facility for special programs, especially the musical ones. As usual, he provided kindness and comedic relief to everyone around, and, most importantly, he loved her unconditionally.
At this time last year, just after Grandmom’s 90th birthday, she took yet another turn for the worse, this time with significant swallowing problems and a cough that just wouldn’t quit. Her doctor met with my parents and broached the subject of hospice support being provided in addition to the care she was receiving in the nursing home. It was obvious to anyone who had seen the changes in Grandmom that, while she did have good care, she did not have good quality of life. She had lost the ability to feed herself and now couldn’t even swallow without choking, which resulted in some of the food or liquid spilling over into her lungs. It was clear what Grandmom would have decided had she been able to make that kind of decision for herself, and so, with a heavy heart for the loss of the woman she used to be, my dad signed the papers for his mom to begin receiving hospice care.
The doctor told my parents that Grandmom could possibly recover from the cough but that she wouldn’t improve functionally and that she could be with us for a matter of days, weeks, or even a couple of months. In the last text message I ever got from my dad, he told me about the hospice decision and expressed how sad he was that it seemed like she didn’t have much longer to live.
But Grandmom surprised everyone; in fact, she did so more than once over the next six months. She did recover from the cough, and then she took another turn for the worse on the day after Thanksgiving, this time coming so close to death’s door that the hospice nurse told us to hurry to her bedside to say our goodbyes. She had the rattley-breathing and was unresponsive, and she hung on by a very thin thread for days before she rallied to her former state. It wasn’t yet Grandmom’s time to go on ahead.
And so, as she continued on hospice, we continued to visit her as much as we could, but, due to his time in the hospital and then in the rehab facility, Dad could not visit, as he usually did several times per week. We told ourselves that Grandmom didn’t notice his absence; certainly she didn’t ask about him, but, with the nature of her own state of confusion, it was impossible for us to tell what she was thinking. Dad worried so much about her, and he was relieved and grateful whenever we visited her and reported back to him that she was doing as well as could be expected. It was one of the few things we were able to do for Dad during that time that made him feel a little better, and we were so thankful to have the opportunity to spend extra time with Grandmom and to do something to take away a little of his anxiety.
By the end of November, Grandmom had healed from the infection in her lungs. Her health stabilized over the next few weeks, but, devastatingly, Dad’s continued to decline. It was so completely surreal for us to bring in hospice services for Dad too just before the New Year and then to have him go on ahead shortly thereafter. How was this happening? Grandmom had been so sick for so long, and Dad was the picture of health. It was simply unbelievable to everyone who witnessed it.
There is much, much more to The Grandmom Story, some from the time between when Dad went on ahead and a few months later when Grandmom did too and a lot more from her Real Life, before she got sick.
A couple of years before Grandmom got sick, she gave me one of the best gifts I’ve ever received: a collection of several decades’ worth of journals that she had kept of her life. I had been asking her about details of her life for a long time, trying to get to know her as a person not just a grandmother, and seeking to procure her history to learn from and to share. She made a decision to entrust those to me, an honor which I do not take lightly. I told her at the time that I would one day write her story. She told me she would like that and even bragged to some of her friends about it. Further down this road of grief, I intend to keep that promise and to share her story, which, by the way, is fascinating and full of surprises and, not surprisingly since she is indeed my dad’s mother, full of perspective and life lessons.
Grandmom was a woman to admire, a person who touched many lives and who had a far greater impact that she could possibly have realized. I don’t know if they serve birthday cake where she is now, but I do know that she is at peace and that she is most certainly with her husband (my grandfather) and my dad, and that in and of itself is cause for celebration for her.
Grandmom loved this song by Willie Nelson.
Thursday, September 29, 2011
I’m pleased to share the following guest blog post by David Haas, who contacted me recently to ask about contributing to this blog. I fully agree with David’s remarks about the need for emotional support for those who have or who have had cancer, and I will add that I personally have also experienced great benefit from grief support groups and grief counseling services since my dad went on ahead.
Besides support groups and individual counseling sessions, emotional support for individuals with cancer and their families can come from social networking – in cancer-specific formats like The Cancer Buddies Network (www.cancerbuddiesnetwork.org) and general formats like Facebook – as well as from friends and family members. Obviously, it can be helpful to get the appropriate emotional support during treatment (Sadly, my dad’s team certainly fell short in this area, and he suffered because of it.), and it can be equally important to get it after the treatment is over or, as in my case, when dealing with grief after a death of a loved one. Certainly any type of cancer can bring about the need for support, and, like David and many others, I encourage anyone who is dealing with Cancer to seek out those services as needed.
And now I will hand off the Talking Stick to our guest, David Haas:
The Benefits Of Emotional Support Networks For Cancer Survivors
The need for emotional support does not end when the cancer treatment ends. Cancer survivors need as much support after cancer as they did during treatment. Emotional support systems can help people manage their challenges during any stage of cancer. And they are vital for improving quality of life.
What Is Emotional Support And Where Does It Come From?
Emotional support systems are more than just a concept. They are the people, organizations, and programs that help individuals through cancer. Cancer survivors need many types of support: emotional, social, spiritual, medical, financial, and legal. Emotional support systems are especially beneficial because they provide encouragement, comfort, and assistance during a difficult time.
Many people and groups make up an emotional support system. Family members, friends, health professionals like the doctor or the oncologist, neighbors, colleagues, faith leaders, and other cancer survivors -- all of these people can answer a cancer survivor’s need for support. But survivor networks may be the most valuable support of all. Here are some online support systems that have proved to be very beneficial:
Cancer Survivor Networks
Cancer survivor networks consist of people who have “been there” and “done that.” They understand cancer better than a doctor or loved one, because they have fought the battle and survived.
Talking or writing about cancer -- and all the feelings, frustrations, and fears it stirs up -- is an important part of the healing process, even after treatment. Cancer survivors often heal best with the help of emotional support systems like survivor groups.
Cancer survivors can find support in-person and online. Local support groups often meet in hospitals, churches, and homes. Group members share stories, resources, advice, and encouragement with other cancer survivors.
Online communities allow cancer survivors to interact over the Internet, and anonymity is optional. In fact, online groups are the best option for some people, who find support in blog posts, discussion forums, chat rooms, instant messages, and email communication.
The Benefits Of Support Networks
A study by the California Breast Cancer Research Program examined the effectiveness of online support groups for breast cancer survivors, with encouraging results. Women who participated in electronic support groups were better able to cope with anxiety, depression, and pain. They were also more optimistic and expressed a zeal for life.
While the study looked specifically at breast cancer survivors, support groups are likely to have similar effects whether a person has prostate cancer, mesothelioma, or other malignancy. And support is helpful whether it comes in the form of a local group or online community.
Each person’s cancer journey is unique, and each survivorship is different. The emotional support of doctors, family members, friends, and co-workers is essential. But encouragement from the people, who have battled cancer and won, is often the best emotional support of all.
Tuesday, September 27, 2011
To read the first entry on Anger, click here.
I recently came across this quote by Maya Angelou: “Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean.” That started me thinking about what the difference is between bitterness and anger.
The dictionary defines bitterness as a state of being angry, hurt, or resentful because of one’s bad experiences or a sense of unjust treatment, and anger is defined as a strong feeling of annoyance, displeasure, or hostility.
Hmmm. I’m not sure that helps me.
I think there definitely is a difference; it seems like it’s ok in society to be “angry” but not to be “bitter.” Maybe they start out the same but end up differently: anger can be expressed and, in theory, decreased or eliminated, and bitterness stays the same or gets even worse over time.
I’m still not sure which one I am at this point. Maybe both. I want to say I’m not bitter about my dad’s illness and death; I’m not so self-absorbed as to be unaware that illness and death happen to someone (and someone’s loved ones) every minute of every day. I get that our story is unique to us, but it’s not really unique. I’m still mad, but I’m trying to get it out, to turn it into something productive if that’s at all possible, to look for a Silver Lining in all of this, to count my blessings in addition to feeling the burn of the anger. Hopefully that puts me in good standing in the Anger vs. Bitterness contest (Have I mentioned that I’m a tad competitive?), because it’s really all I know how to do right now.
Someone asked me recently what it is that I’m so mad at, besides the obvious loss of my dad. For me, it’s also the statements that people make, to me, to others, and in general, about cancer, death, and grief. I don’t know why that infuriates me so much, but it sure as hell does.
Someone I know recently posted a link on Facebook to an article about how people should take control of their destinies with healthier lifestyle choices. The author even went so far as to imply that those who did would – you guessed it - avoid cancer. Um, no.
I had to duct tape my hands together for a few hours to keep from typing a blistering response to the posting. I realize that kind of stuff is meant to be helpful, I really do, but speaking like that author did and then seeing people give him credit for putting out info like that (Thanks, Captain Obvious!) pisses me off. I want to yell, “You don’t know what you are talking about!” It would seem like this would translate into me feeling protective or advisory towards people who say things that I now see as ignorant and uninformed: “Be glad you don’t know that no one is safe!” but I don’t; I’m just mad. Mad that I have to know that claims about how cancer can be avoided are ridiculous and that I have to know that there are no guarantees, even when we follow “the rules.”
It also upsets me when people try to shut down grief, presumably because the emotions or memories or perspective of those that are grieving make them uncomfortable. Sorry!
I spent lots of time running with my dad when I was a teenager, and he was always a better runner that I was. Sometimes when I was lagging on a run, he would speed-walk beside me in step with my slow-jog pace. Every time he did that, it made me mad. I felt like he was taunting me and that he didn’t understand that I was just having an “off” day. Most of the time, I responded by speeding up my pace, maybe in annoyance and maybe even to get to the end of the run faster so I could dodge him for awhile.
I feel like something similar happens fairly often in the grief process for me these days, not with Dad of course but with lots of other people I know. So what if I’m at a slow-jog pace in grieving? I tell myself they can walk alongside me (or away from me!) if they so choose, but I cannot let myself speed up the pace in response to what they are doing, feeling, or thinking.
I hope that I can just go about my business, wading through my own grief, without that anger entering into any more relationships than it already has. I need support, or, failing that, peace and time. Like that expression we heard so much as kids, “If you can’t say something nice, don’t say anything at all,” except I want to substitute the word “supportive” for the word “nice.”
I want to push through the Red Door of anger; I want to focus on feeling fortunate for what I had and what I have instead of what I have lost over the past year. I want to find a way to, as we say in the South, make sense of this mess!
I hope that I can keep myself together, especially through the next few months when the one-year anniversary passes for Dad’s diagnosis, surgery, last birthday, last holiday season, and for the time when he went on ahead.
I hope the anger burns clean. I hope I don’t get stuck in this process. I hope I can keep my perspective and avoid bitterness.