Welcome to Let's Talk About It. In this
special section we will feature the question/topic of the month and provide an opportunity
for an interactive exchange that will help find some answers and possible
solutions to concerns. If you wish to participate, just
follow the link provided at the end of the question/topic and add
your comments and thoughts.
Location: Charlottesville, Va
Time: 05:42 AM
I do NOT attend a support group because there are none in the Charlottesville area. I would LOVE to be a part of a Caregivers support group if there was enough interest in this area. I would even be willing to help organize it.
Name: Valeria WOLFF
Location: Burgundy France
Time: 09:01 AM
Thanks to the LBD Association and their web site and forums, I am able to survive this horrible disease as the principal caretaker for my husband , diagnosed with LBD in 2000. Here I find good support and not with the medical world here, who never seems to understand that the caretaker needs to be counseled too.
Time: 07:18 AM
I would love a support group to attend. I would love a chance to get out of the house and do something that is about me. I don't attend because it's not possible. In addition to caregiver for my 91 yr old father, I also have young children for whom I'm trying to maintain some sense of normalcy and not cancel their activities because of my limited freedom. My husband works a job that requires him to be on 24/7 emergency service 1 - 2 weeks out of every month. I am without a support system and at times it is frustrating.
Name: Melody Werner
Location: Bay Village OH
Time: 05:05 AM
The ongoing mantra: no time. The caregiver support group is 45 minutes away; I have a full time job and a weekly rehearsal and (as possible) exercise time at the Y. I would love to find an ongoing chat group or website devoted to caregivers for discussion and support.
Time: 07:15 AM
I do not attend a support group because there is no time. I work, have a family of my own and a huge farmhouse, and take care of my ailing mom and dad. My only two days off a week from taking care of my parents is spent with my family since we have such a limited time together. And on those days I do not want to leave my house. I'm usually exhausted. The time thing is very frustrating.
Location: Joliet Illinois
Time: 07:42 AM
I do belong to a support group but haven't gone the past 2 months d/t my own illness. In one way it is great...I get away, have time for myself alone and have met some wonderful people. On the other hand, most meetings follow no format and one person may dominate the entire time. The persons facilitating are sweet but don't intervene in times like that. Consequently, I have never once (and I've been going since early summer) had the opportunity, nor have been asked, to share some of my feelings and struggles. Possibly this is what support groups are....maybe my idea of what is supposed to be is wrong...I don't know.
Name: Yvette Basabe
Location: Ft. Bragg, NC
Time: 01:24 PM
Yes, I attend and now that my loved one is back from the hospital, I take him to.
It is therapeutic to hear the stories others have to tell and how others are coping or living with their situation. Adam, my boyfriend who suffered a severe traumatic brain injury from a motorcycle accident finds it comforting to hear that other people are feeling and asking themselves' the same questions. Young and old have similar fears. I personally enjoy it because I like to know how other caregivers manage and how they hold on. I think support groups are great and everyone should at least try it.
Location: Long Island New York
Time: 04:49 PM
It's very simple...there is no time left to attend a support group when you work full time and are the main caregiver for an elderly parent.
Time: 08:01 AM
I guess I am repeating what Joyce has said: I have attended a few meetings at four different cities, and though I found some comfort and information early on at each group, I soon dropped out for the same reason: eventually, there is always one person whose problems dominate the available time--often repeating the same situations and complaints week after week, apparently ignoring the experiences offered by the group. Even round-robin speaking gets sidetracked. Clearly, this setting works for them, but I feel the moderators, as lovely as they are, need better facilitating skills to allow others an opportunity to express themselves. Yes, it works very well for some folks, and though I sincerely would not want to upset what is important for them, a little more group management might be helpful for the rest of us.
Location: Pearson, WI.
Time: 10:45 AM
I am a support group facilitator. During our group, if someone starts to monopolize the time, I ask another member to comment or suggest ideas that could help this person. If that fails, I suggest to the "talker" that we move on to someone else and if time permits, we will come back to them toward the end of the meeting. I then stress that we want to give everyone a chance to talk today. If you feel you are not getting a chance to voice your concerns, speak up! Even if you have to interrupt "I have the same situation at home" and then just change to the subject you want to discuss. Hope this helps.
For those of you who don't have time, make time. It's your time for yourself and you need to do that. If you don't and you burn out or become ill, who will be the caretaker then? You'll feel better just because you've been able to share your feelings and frustrations with others who are in the same boat. In fact, you might find out your situation isn't as bad as others. Good luck to all of you.
Name: Joyce, Joliet IL
Time: 07:21 AM
Linda, thank you for your thoughts. I am not a shy person but find it extremely difficult to interrupt someone when they are speaking, esp. because everyone's problems are so acute and when they are being expressed, I would never interrupt and talk about myself. Never. While I don't feel that it is the TOTAL responsibility of the facilitator to direct the way the group is run, the burden does fall on them to keep the group "balanced". Otherwise, why would we even need a facilitator??
Name: Robin Lipsker
Time: 07:51 AM
There is no support group near me, and I have a hard time with transportation. I would really like to meet others in Denver who are caregivers.
Name: DONNIE NAIR
Location: CARPINTERIA, CA
Time: 11:47 AM
I have been going to a support group for about 5 years. First when my husband was diagnosed, then when he went to daycare and now while he is in a care facility. I get a lot of support from others and our facilitator and I am also able to support others. We meet twice a month at a local church that offers us free space.
Location: Kansas City
Time: 02:31 PM
I have been going to a support group for caregivers at the same time as a support group for those suffering from Alzheimer's. My husband attends that group. It has been important for me to attend - I always find something that helps me get a new idea or a new mantra or a new way to respond to my husband's disease. Always! Sometimes, I am not looking for what hits me in the face; sometimes, I get exactly what I wanted. Always, I see caregivers who are now friends who are doing the best they can do and are willing to share the journey with the rest of us. My only fear now is what I will do when my husband no longer can attend the other group and cannot be left alone. How will I get to attend the group that has become so important to me? Getting any kind of respite care is difficult.
Location: Mound City MO
Time: 05:12 PM
I would love to attend caregiver's group meetings, but they are non-existent where I live. I don't like to drive 45 miles south of a night-time to attend meetings in the next city. I'm not sure how to take the wheel of this bus to get a group started. Where do I start?
Location: Lubbock, TX
Time: 07:19 PM
I do attend a support group that is for both the caregiver (me) & one for my son that is a survivor from a brain injury. I feel this has helped me tremendously especially when there are times like today that Erik is regressing. I can also help others when Erik has been doing well & the other caregivers are new at this life.
Location: Fort Myers, FL
Time: 08:44 AM
We do not attend a support group because at present there is not one that addresses our situation. I am the stay-at-home mom/caregiver for my 7 year old daughter who suffered a TBI in an auto accident sixteen months ago. A support group exists, but the patients are adults.
Time: 08:48 AM
Yes, I have attended an Alzheimer's Support Group for a couple of years now. I read all the comments that others have written in and there were some common "challenges" and "solutions" in there but one common thread was that usually one person dominates the meeting. The facilitator in our group will tell the talker to see her after the meeting and they will discuss further the caregiver's problem. Most of the time this works and sometimes it doesn't. When it doesn't, please be patient and you might get some good out of that talker's problem. If your facilitator doesn't control the meeting, maybe a one on one meeting with him/her would help you. Tell her how you are feeling, etc.
For those of you who don't have a chapter nearby, if at all possible, start one. Our Support Group is held during the day at our county Hospice Office. Good luck.
Time: 09:07 PM
I do attend a support group that meets once a month. They have helped me a lot. I was lucky to find this group in my area. My church started a support group, but then I was asked not to come, as it was going to be for Alzheimer's caregivers only.
I found it difficult to talk to this facilitator, saying that all of us who are caregivers go through the same stresses, but she didn't think my concerns were valid. My new group is the best.