Katie’s life before her TBI was full of profoundly meaningful activity. Katie was dedicated to helping others in a multitude of ways. (See “The Plan” Katie’s Story Part Six.)
Katie’s life now revolves around her daily care.
Additionally, however, there has been significant improvement in her social interaction. She is able to go to church. Friends come to visit, and together they enjoy activities like dinner and movies and games.
But I’ve been thinking about ways to rekindle the element of altruism that was once integral to Katie’s objective in life.
I asked Katie if she would like have a pen pal, and suggested
Gabrielle Giffords http://en.wikipedia.org/wiki/Gabrielle_Giffords or
Sharon Budd http://www.pennlive.com/midstate/index.ssf/2014/10/victim_of_i-80_rock-throwing_s.html
The idea did not pique her interest.
I talked to Sam about joining a support group so that he and Katie could have the opportunity to both give and receive encouragement by sharing common challenges with other brain injury patients.
Sam did not discount the idea entirely, so I think I will bring it up with Katie at our next visit.
Sam did say, however, that he is not personally under a lot of stress, and although that is probably not entirely true, I will say that his demeanor has improved greatly. Sam appears to be doing better than I have seen him for more than two years.
When I asked Sam specifically if life has improved for him since Katie came home, he replied, “Yes.” This I was obviously pleased to hear.
I’ve been struggling somewhat over continuing to blog Katie’s Story. There is no longer any “big” news to report—and that is a good thing.
So, although I will leave the door open for future posts about Katie, I would like to sum up Katie’s Story with the following observation.
Life is unpredictable and sometimes catastrophic. What happened to Katie was tragic and overwhelming. Although Katie’s life will never be the same as it was before her brain surgery, it is better. Arriving at this place was improbable, but every effort has been worthwhile.
An interview with the authors of “What to Do about Mama?: A Guide to Caring for Aging Family Members”Posted: May 30, 2014
At the end of my post “The Family Meeting” (2-22-2014) I said: It’s really good to look at and consider a variety of perspectives and ideas. That’s what’s great about support groups…but that’s an entry for another day.
I’ve had my eye out since that time for an interesting article about caregiver support groups. The other day I searched Word Press for a blog. None. Nothing. Nada. They suggested I start one. Well, I want to do a support group post—not a whole blog—so here goes.
How I became involved with a support group:
If you’ve been following this blog, you know that I was primary caregiver for my mother-in-law who lived in our home for four years. Soon after we began that arrangement, my sister-in-law (SIL) told me that if I needed someone to talk to that’s what she was there for. Over time, however, I sensed that I sometimes got into areas that made her uncomfortable. For example, when I expressed my disappointment with the frequency of two of the siblings’ visits, SIL replied, “What my brothers and sister choose to do is on them.” It was about that time that she recommended I join a support group, which I did.
When people ask how it’s going in regards to caregiving, sometimes in that moment caregivers find themselves letting their frustrations flood out like water from a broken dam. But afterward they feel regretful or “weak” for having unloaded at an inopportune time. There is no reason to feel that way at a support group. The other members just “get it.” There is an amazing validation of feelings: you aren’t just “imagining” it, and you are not “bad” for feeling that way.
Sometimes you receive feedback that acknowledges and defines what you are trying to express even before you are able to put it in words. Support group members are good listeners. Listening to others is equally as helpful to the process as speaking; it helps keep your situation in perspective. It is common to feel that others are dealing with conditions much harder than yours and to wonder, “Why am I complaining?” But the other members really do understand—all caregiving has its challenges.
Some other benefits of support groups are:
- It’s cathartic to “let it out” in a non-judgmental and receptive environment
- It’s a welcome change of scenery and a time-out from caregiving
- It’s helpful to hear the perspectives and suggestions of other caregivers and professional staff and to sometimes receive the “nudge” needed to make difficult choices
- It’s great to realize that caregiving is an experience that group members “share,” unlike the “I understand this is difficult for you,” you often hear from family and friends who do not indeed share the full scope of the experience
- It’s a wonderful feeling if your experience and participation are helpful to and of value to others
- Enlisting friends and family to stay with the care receiver so you can attend support group is a good way for others to provide the help they have offered.
The main difficulty of support groups is just being able to go—because of the constraints of time and logistics.
On-line Support Groups:
For caregivers who cannot find the time or coverage to attend a support group, there are a number of good groups available on-line. Although I did not participate with these groups when I was a caregiver, I have been exploring them regularly while looking for material to blog. Although I personally preferred to talk to other caregivers on a face-to-face basis, a big advantage of on-line support groups is the rapid response to caregiving questions and concerns, as opposed to a “monthly meeting” format. Take time to explore these sites to find what works best for you.
- Elder Care at Home. http://eldercareathome.org
- Minding our Elders http://www.mindingoureldersblogs.com
- caregiving.com http://www.caregiving.com
- AgingCare.com. http://www.agingcare.com/Caregiver-Forum
- Help! Aging Parents http://helpparentsagewell.blogspot.com
Although the issues of time and securing needed coverage in order to attend are the main obstacles that interfere with attending a support group, those caregivers who do find a way to attend report that it is well worth the effort.
The following excerpts from “What to Do about Mama?” express a variety of perspectives about support groups.
- I haven’t belonged to any support groups, other than one. But that group has been very positive for me—and I attribute that to the skills of the facilitators. The founder/leader of the support group is so tremendously empathetic; she is a caregiver herself in an extremely difficult situation. The other professional is a hospice social worker, with the special ability to put her finger directly on any problem with which you are grappling. Even though I am no longer caregiving, I have continued to attend the support group because our group leader makes me feel as if I have an important contribution to make in offering knowledge and support to other caregivers. Since I “retired” from a job to be a caregiver, it makes me feel really good to play the role of at least a “quasi-professional.” WTDAM pp.102-103
- I attended almost all the support groups that were available in my area. Many were helpful for different reasons or needs that I was seeking to address. Presently I find that I need to attend only one group that is more for me—not for my mom. I need the support from this group of women who have become my friends for at least one day a month. They care about me; they patiently listen to me and my growling. They pat me on my head, they advise me, they praise me, they encourage me so that I can go on, and they let me know that I am doing a good job despite my fears and failures. The funny part about the meeting is that sometimes I go there feeling like I cannot go on, especially after having a particularly bad day/week/month, but there is always someone who has a story that is so much worse than mine. Listening to that story immediately puts it all into perspective and makes me feel that, “Yes, you can do this”—because she is doing it. It is empowering and replenishing and sometimes the highlight (if not the social event and reason to spiff up) for my entire month! WTDAM p.54
- I did not join a support group, but I found that I gravitated to people who were currently or who had previously provided care to elderly people. It was helpful to discuss shared experiences. WTDAM p.57
- My mother and I did not join a support group—we simply did not want to rehash what we were living through with other people. WTDAM p.76
- I have gone to a support group and plan to continue going. I absolutely recommend it. One benefit is that such a group makes you realize you are not the only one whose world has turned upside down. On the other hand, sharing is sometimes difficult for me because I am acquainted with several of the women, and privacy is important. WTDAM p.84
- I did not join a support group because I thought I was too tough. WTDAM p.100
- My sister and I both had full-time jobs, and although it was stressful, we looked at caregiving for our mother as just another job we had to do. We did not join a support group—we barely managed to visit her several times a week and keep up with our own lives! WTDAM p.134
- Did I join a support group? There was no time to for that! WTDAM p.139
- Although I did not join a support group, I was fortunate to have good friends to talk to about the difficulties. Additionally, I appreciated the “pat on the back” that friends provided me. They also made good suggestions and gave me the nudge that I sometimes needed, such as calling on hospice. WTDAM p.171
- My wife and I attend support group meetings together. You and your loved one may think that attending these meetings shows weakness. I must mention here that the meetings we attend are uplifting and informational. WTDAM p.209
- I searched for a support group for caregivers—most were disease-specific or church-sponsored. I then made a proposal to my employer to start a caregiver-support group. They gave me the green light. I started “Care Giver Coffee Break & Tea-L-C” five years ago. I wanted it to be in a non-clinical setting and a place where for an hour a month, caregivers could bond with others in the same boat. It has been a wonderful experience, both as a facilitator and a caregiver. It is cathartic; we cry and vent and laugh and love each other. I would recommend to others to seek help and join a support group. WTDAM p.220