I an April 22, 2020 article from Caregiver Warrior website, “CAREGIVERS! STOP SUFFERING IN SILENCE. IT’S DANGEROUS!” Suzanne White states that it is an almost universal tendency of caregivers to suffer in silence, and because of this, it is not only dangerous to their well-being, but also to everyone else involved. She goes on to say that when she reached out to talk about what she was feeling, her life changed instantly.
It was during my adolescent and teenage years, that I suffered a time of “secret keeping”—which later, as a young adult, I recognized as detrimental to my emotional well-being. With a lot of personal introspection and practice, it was a pattern I changed.
Fast forward forty years to the time when I was primary caregiver for my mother-in-law who moved into our home. Everything went quite well for about two years. But then her health began to decline rapidly, and my stress began to increase significantly. I joined a support group and it was great to be able to talk about the stresses of caregiving with people who just “get it.”
Suzanne stated in the Caregiver Warrior article: “So silence be damned. Don’t be a victim or a martyr.” That was exactly how I felt—which I think stemmed from by my role as an IN-LAW caregiver. The support group leader suggested a family meeting to encourage more involvement from my husband’s siblings. But I must report that even though strides were made, the once-good relationship we had with my husband’s family took a major hit.
“Despite a good multi-decade relationship, the difference in our family cultures and its impact on who we were as people was just too vast. Once the trouble began, interaction among all parties became increasingly difficult, and then impossible. That was the quicksand I never saw in my path.”What to Do about Mama? p. 40
To sum the experience up: I agree that suffering in silence is dangerous and that growing resentment would have had a more destructive result. But sharing our feelings and frustrations with “the others” did not result in an instant change for the better, and in fact, although we have been able to rebuild relationships with his sisters, my husband and his brother are still estranged.
My grandchildren’s Grammy, in other words—my counterpart—passed away on Father’s day. Up until the last half year of her life, she was a vital woman and a go-to grandma. She and her husband were married for nearly 44 years–two months less than I have been married to mine. He wrote her eulogy, a beautiful tribute to his wife and their marriage. The eulogy was hard for him to deliver at the funeral; he did it, but broke down. My 6-year old granddaughter sat beside me, my arm around her holding on tight. She cried when she saw her grandfather cry. My 3-year-old grandson was a little wiggly in my lap; he being too young to understand.
Really, none of us “understands.” Sure we know that we all live, and then we all die. But we would drive ourselves to madness if we tried to make sense of the who’s and the how’s and the why’s, or the “fairness” of it all.
It’s also so hard to know what to say to someone who is unexpectedly diagnosed with cancer and decides not to undergo treatment. So I tried to express my feelings by telling her:
“I am thinking about…
how overwhelmed you must have felt at the seemingly sudden onset of your disease;
how difficult it has been for you to decide what path to take;
the strength of your convictions in deciding your course of action;
your incredibly difficult decision and the courage of your choice;
how you are living life on your own terms;
the wonderful job you have done raising your children who have pulled together in providing support, in respecting your right to choose, and in demonstrating their unconditional love for you;
how much your daughter loves you;
how I hope my son is able to tell you how deeply he loves and respects you, but that if he cannot find his way to speak of his emotions, that you will trust me when I say that he does;
how I will always tell our grandchilden how much love their Grammy has for them and how much joy they have given you.”
And then, at a later date, when the end was drawing near, I sent:
“A Heartfelt Message”
You have given our family a precious gift—YOUR DAUGHTER.
Your kind and gentle nature lives through her.
You have instilled in her the values of love, patience and honesty.
And so it passes—from mother, to daughter, to granddaughter.
Strong women, all.
I can only hope that these words somehow helped. I think they are what I would like to hear.
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