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.
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
Hi my name is Linda and my husband has had MS for 17 years. In the last 5 or so I have been his sole caregiver. It has been rough at times especially when his trigeminal neuralgia triggers . He has had 4 surgeries for it and the last one lasted 7 years. We are doing well now but he is in a motorizws wheelchair. We go many places with our linitations but try to enjoy our life with family and friends. We have two grandchildren which we also take care of a few days and week and they are thejoy in our life. My website for the blog is http://www.relativems.com. I find it helpful to write about our lives and what we do . My support group is our friends and family. They are there for us no matter what and have travelled with us on many occasions., It does get difficult for me to go out sometimes because when he is in one of his episodes , I worry about leaving him alone just for a few hours. Hope you find the blog interesting and helpful .
My name is Nancy and my husband has had MS for 15 years. I, also, am his sole caregiver. He has secondary progressive MS and is also in a motorized wheelchair. He doesn’t have trigeminal neuralgia, but I do. I have it in my eye and head. What I want to ask you is, has your husband ever had accupuncture for it? I have and it works! The pain in my head was so severe I couldn’t function. I was at my limit with the antil-seizure medication (the higher dose made me sick) and I didn’t want to take the pain med anymore. My dr suggested Gamma Knife. Everyone kept telling me to try accupuncture but I didn’t believe in it. I didn’t want the Gamma Knife procedure so I decided to try the accupuncture. After the 3rd treatment the pain started to subside. It was a miracle. My husband and I go to a MS group once a month and one of the women in the group has TG. I told her about the accupuncture and she tried it…it worked for her also. If your husband’s TG returns, maybe he would be willing to try it.
I, too, am struggling with my husband’s ups and downs. He’s very resistant to help…even mine. I work full time and it’s hard for me to leave him all day. He can’t use his right hand and has a difficult time transferring from his wheelchair to his recliner chair and the commode. I’m a nervous wreck fearing he’s going to fall….it’s happened several times. He refuses Life Alert. Very stubburn man.
Hello everyone,
I’m a caregiver for a 92 year old lady with MS. She has had it since age 28 and it went into remission a few times but seems to be progressing again this last year. Her left side of her body is paralyzed now. I’m feeling the need to find a caregiver support group to find ideas of how to deal with her depression. She often comments when I ask what may I do for her to shoot her. It’s become almost a daily comment. I will usually say oh don’t talk that way you know I could never do that because of course I couldn’t. It’s hard to see her so sick of not being able to do anything much by herself. We do use a hoyer lift now and get her into her power chair almost daily. She feels worthless and like she’s a bother to people that help her. I always remind her I choose to be there because I want to be so she’s not a bother to me in any way and I’m thrilled if I can help her feel more comfortable or cheer her up. She has given me a meaning of purpose again in life and is so kind and loving and I’ve told her so and she loves to hear that. She said one day then I do have a purpose which was special to me. She has had some not so good care in the past years and since me and another gal have started caring for her her blood pressure has gone down a lot. We have made it a big priority to get her out of bed as much as possible but she usually doesn’t want to be up more than 1.5 hours if that. I really need to find a place to talk about situations that come up and feelings we are both having. If anyone knows of a good support group for this online please let me know. I’m having trouble finding an in person group here in this smaller area. Thank you to all you loving caregivers who truly give good loving care to those in need of love and support during what can be a hard time later in some ones life. Take care
She’s also been having extreme upset stomach problems last few months and lots of gas. I’m trying to educate myself on foods to help her with this since she is in bed almost all day it makes it hard for the gas to come out of the bottom area. I was thinking if she feels like that if maybe I could put her on her side for a few mins to help the gas come out easier? I have so many questions! I do well with most of what I do but there are many issues I could use a experience RN or caregiver or CNA etc to talk to about. I’ve been doing this for 8 months now and she tells me I should train my coworker who is a CNA which recently has moved on from this job. She tells me I’m wonderful at what I do for her yet… I always try to find ways to do things better which she loves. If I can make something easier for the both of us it’s a win win situation. Example is she always has a runny nose and says she has terrible allergies. She takes an allergy med daily and has a holistic spray for her mouth that temporarily helps her. I caught her one day with her useable hand stuck in her tissue box so I now cut the top of the box open to make it wider at one side. She loved that idea and now can get her tissues out without her hand getting stuck :) I have so much to talk about so I’m really hoping I find a good support group online. Take care
My wife has MS and is confined to a wheelchair. She too had severe pain (it brought her to tears) up to as many as 6 times a day at it’s worst. It took 2 1/2 years but one of her doctors suggested Tegretol. She takes 2 – 200 mg tablets a day and the pain is completely gone. Initially he also prescribled 100 mg chewables of the same medicine to be used immediately when the pain was felt as well. She did use some the first month but therafter did not need them. It has been well over a year since she had that pain which was in her left arm.