During the last few weeks, I’ve been asked by caregivers (via this blog’s contact form) for help finding support for themselves in their local communities. I take these requests seriously.
In fact, it would be impossible not to because the caregivers include information about their particular needs. Perhaps it’s empathy, or a sense that we’re in this thing together, that always gives me a little sadness when I read requests for help. I so wish there were a way to eliminate Multiple Sclerosis.
While looking over this week’s emails, I realize that there are a couple of general pointers I can offer to caregivers who are looking for support in their local communities. I’ll summarize them here. They may not work for every MS caregiver, but the principles will hold true for most.
1. Find a religious community you feel comfortable associating with. It’s nearly a universal truth: those who seek relationship with God will have an interest in serving their fellow man. If you have lived in your community for a period of time and have participated in a local faith congregation, you know what I mean. Sunday School classes, Bible study groups, all sorts of small groups seek to minister to others in need. If you become comfortable enough with a local minister to be vulnerable and share your need for support, I think the chances are good that you may find exactly what you need.
2. Don’t limit your search to caregiver support groups related to Multiple Sclerosis. The social services department of many hospitals will offer support groups for caregivers in general, unrelated to a specific disease. Again, in their ministry to the community, many churches will offer caregiver support groups.
Can a non-specific caregiver support group be helpful for you? Will other group members be able to relate to your unique needs as a caregiver for a Multiple Sclerosis patient? Probably, yes. Much of the stress related to being a caregiver is unrelated to the particular disease. Much of it is caused by the emotional issues that arise, the interpersonal struggles that come between you and the person for whom you care, the general issues related to scheduling, managing medical matters, financial difficulties, juggling the parental roles of two when only one parent is able to be active. You get the idea.
3. Use the Internet. The quickest way to find a caregiver support group in your community is to use a search engine and search for: “your town’s name” “multiple sclerosis” “caregiver support group”.
For example, I would search for: Ruston “multiple sclerosis” “caregiver support”.
4. National and international Multiple Sclerosis-related organizations have chapters across the country and around the world. These are good resources for caregivers and patients. Take advantage of the connections they have in your community by visiting the web sites of organizations like National MS Society, Multiple Sclerosis Association of America, and the Multiple Sclerosis Resource Center.
5. Finally, don’t give up in your search for support. I cannot stress strongly enough the fact that if you do not take care of yourself, you will not be able to care for your loved one. Find the support you need, even if the search for help is a frustrating process. Among religious communities, non-specific caregiver support groups, the Internet and MS-related organizations, support for caregivers is available in many communities.
Tags: caregiver support, caregiver support group, MSAA, multiple sclerosis caregiver, NMSS, sunday school class, support for caregivers
I’ve started a similar blog much like yours for what seems to be the same reason. I find that now that my husband cannot do much for himself that it is impossible for me to go to support groups or anywhere else for that matter. I thought maybe a blog would help me connect to others and obtain the support I’m seeking and at the same time be a resource for others. Thanks for your example.
Dear Rick,
My husband has had multiple sclerosis for 16 years. It has changed from relapsing-remitting to secondary progressive multiple sclerosis. He currectly is in a hospital bed and if the pain isn’t intense will try to sit in a electric wheelchair for as long as he can stand it. I’ve been current on the medications that have been suggested for secondary multiple sclerosis and when we last spoke with a neurologist , he indicated there wasn’t anything we could do but try to make my husband be comfortable. I was hoping that you or some of your readers would know of any medication that could help him. I was also hoping that you would have some information on a caregivers support group for secondary multiple sclerosis that is on-line. As you can imagine, it’s not that easy to leave the house and none of our friends visit. Understandably, they are busy with their own lives. Any help you could provide would be appreciated.
Thanks,
Gabrielle
Hi Gabrielle,
My wife is entering her 8th year of primary progressive ms. She also has a very messed up
lower spine area (s.i. region) due to previous injury. When pain management gets to be too much, she gets relief from a small toke of medical marijuana. It doesn’t take the pain away but rather lets her focus on other things and not ‘think’ about the pain. We live in a state that allows the use of med.mj and we’ve always believed in it’s medicinal qualities. Neither of us smoke it
recreationally. I’ve also seen it help my brother-in-law, who has been a quadreplegic for almost 10 years… Same thing… it helps him to not ‘think’ about the pain…
Something to consider… Good Luck in your search for both medication and support (something I’ve just started to seek)
John
I am trying to find support for my friend her husband has ms and she does not have any support, if anyone knows of any other ms carers in catford area please email me and maybe I can get you in touch.
I think this blog is amazing and wonderful. I am a veteran caregiver of 14 years and counting. I have an organization called United Caregivers of America and I recently created Senior Watch 2011 with Heather Pound. I have a radio show on blog talk radio and a posterous page. I recently connected with MS patients and their caregivers on face book. I am going to post a connection to your blog and other informative and helpful blogs and sites like it on my posterous, tumblr, face book, and I am going to spread the word via cinch and blog talk radio. My email is heathercares2011@gmail.com if you have any questions for me.
Has anyone with M.S. had a Kennedy Ulcer?
No but I have a nursing background and looked it up. Unfortunately, the news is not good. IT’s a fast progressing bed sore that goes from a small spot to a large crevice in hours. There is no treatment that I could find and in the elderly, it has been found to be terminal. It has been noted to occur in MS patients but I’ve nver seen it in any of the literature. http://www.kennedyterminalulcer.com is where I found the information. I hope your loved one does not have it.
MS Caregiver Donna