New Post at Caregiving.com -- a Great Community for Caregivers

Dad and my husband at a market this past fall.

I have a new post up about long-distance caregiving for dad at caregiving.com. This task of caregiving for dad is not a chore at the moment, but changes have altered the scenario both here at my home and at dad's place. My footing as a caregiver for dad is totally off-balance and unsure. I don't really know what he needs right now, but I guess that unknown is alright. At least, he seems to be doing well for his age. He seems to be doing somewhat fine alone, but I think I know he's not happy.

I'm not happy. None of us are happy right now. Life is stressful, but we all keep going along, doing what we think we need to do. Some of that "knowing" has changed, though, since mom's death. I am finding support at Caregiving.com -- what a great little community with some great leadership through Denise. In fact, I can't keep up with all the blogs, the activities, the podcasts, or the events this site offers; but it's great to know I have those resources available.

Without caregiving.com, in fact, I wouldn't have had the initiative to get organized around here. Hugh, my husband, wouldn't have a studio for making his baskets. I owe all that to the short amount of time I've spent with Denise and the other caregivers at that site.

I wish dad would find a community similar to what I've found with caregiving.com. He's not computer savvy, though, so that community would have to meet in person. But again, I don't know what dad needs right now. I don't think he knows what he needs.

When are Support Groups Helpful?

When do you know when to connect with other individuals who share your diagnosis or your situation? It's up to you.

I found a great cholangiocarcinoma (CC) support group when I was at dad's house last month. The support group is a "closed" group on Facebook, which means that only members can see and respond to messages on that group's page. As far as I can tell, the group consists of patients and caregivers (current and "after care"), although this non-denominational group also welcomes medical professionals and students.

I never sought out a support group while caregiving mom, because I felt that I was getting the answers I needed from various reliable resources. Also, once I was a full-blown caregiver, I never had time to seek support. I was too busy with mom's appointments, her medications, the tasks we had to schedule (like saline flushes for her bile duct catheter), with my own work, and with my own well-being.

Looking back, I'm not sure I could have tolerated a support group, because I was on a short fuse many times. I did check a few of those groups out, and I wasn't ready. Lighthearted entertainment was not my cup of tea during my tenure, and I sure didn't want to hear about hope when we knew we had no hope with mom's case. I also didn't want to hear about bad news when I knew the news was anything but good for us (some folks will understand this logic!).

I will say I'm more than ready for the Facebook support group now. Now, I have something to share, especially with newcomers to the group who -- on almost a daily basis -- are reporting a loved one recently diagnosed with stage four CC. I'm learning a lot about this disease from patients who have been exposed to treatments that my mother couldn't tolerate with her physical condition. I'm also learning that patients often know more than their doctors and oncologists about their conditions.

I'm somewhat sorry that I denied myself the support of a group during my mother's diagnosis and death, but I did share everything with my friends on Facebook. Believe me, I don't know what I would have done without my friends' support. And, at the time, my friends were far more substantial in their support for me than a stranger's support. Now, however...

I seem to find more support among other caregivers and CC patients than I do among my friends. I don't know why this sea change occurred after mom's death, but I'm sure a lot of this disconnect has to do with my push to finance a space of time to finish my memoir. So commercial! At the same time, I also think that friends have only so much tolerance for death and dying.

And, it's for that latter reason that I find support groups so attractive these days. There's something about a finite boundary on life that brings out the honesty, support, and love that happens nowhere else but within a support group. In that environment, I feel I can share my tears, inappropriate laughter or comments (and find immediate forgiveness), and fears.

If you feel you need a support group, seek one out. So many support groups exist for all types of cancers as well as for caregivers. I'm not sure if this link will work for the CC support group at Facebook, but give it a shot: https://www.facebook.com/groups/CHOLANGIOCARCINOMAsupportGroup (if this link doesn't work, please let me know via Facebook).

For caregivers, I recommend Caregiving.com. This is a great space for folks who are caregivers to spouses, siblings, and friends who suffer from a myriad of physical impairments. Denise will probably meet you at the door. Please tell her I sent you!