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Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 03/27/12

I have been a caregiver for my wife, a stroke survivor, for 15+ years. I am a retired CEO, so there was much to learn—and about me! I would like to start a caregiver support group for men at our church. Any suggestions as to how to go about this?

Best regards,

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Name: Vickie Flinn-Rowe
Location: Pennsylvania
Date: 06/06/2012
Time: 07:14 AM


Ken, I just started a Care Givers Support Group in April in our church community. First thing you need to do is get the word out, through your church bulletin, your local paper and through friends. Put up a note on your library's bulletin board. My first meeting was on April 11 cold, rainy and snowy two people showed up! I went home and said to God, ok I am willing to do this You will have to get the people to come. As of now we have 11 people in the group. Patience is a virtue! I not only provide a support through group but I have speakers share their knowledge of much needed info to my group! Contact your Area Aging on Aging, your Visiting Nurses, an elder care attorney. My topics have been, medicare and medicaid, taking care of the caregiver, nutrition for the patient and the caregiver, eldercare law, yoga for health benefits for the caregiver, services in your area such as: home care, out patient care, adult day care, skilled nursing home care and last hospice. Please note that from experience it does get overwhelming at times to be a facilitator for such a group. God Bless you for you now are a vessel for others! Sincerely Vickie

Name: Deborah
Location: Gethsemane, North Carolina
Date: 03/27/2012
Time: 05:02 PM


Ken, It's not difficult to start a support group. If you've been caring for your wife that long, then you've already informally had support groups already I bet. A group for caregivers is just a formal way of people getting together to talk about their experiences, discuss the problems they are having, share the ideas that worked for them and give words of encouragement. First you need arrange for a location to hold the meetings. It should be held in the same place at the same time every month. Decide whether or not it needs to be twice a month or monthly (I think at first monthly would be best, you'll be surprised how fast the time goes). Then you need to decide who will be invited. You mentioned it's to be for men, but will it be inclusive for those who care for stroke survivors, for spouses, for children, or for any man who cares for a loved one with any disability? I personally think that caregivers are caregivers, and it doesn't matter what is wrong with the person you care for or who they are in your life (many of the caregiving issues are similar when it comes to stressors that affect your energy, outlook on life, emotional and financial stability). We have a mixed group of generally half women and men and generally they care for people with dementia, but I understand that most caregiver groups are tailored to women and that's why you'd like your group to be for men. Considering more women are likely to have chronic illness, your idea is a good one. Next you need a way to advertise the group. Do you want to align yourself with a charitable organization so they help refer you (like the a national stroke association, an alzheimer's group, family caregiving agency)? Personally if I was starting one now I'd stay independent, to set my own rules, but that's after having been aligned with an organization for years. You can advertise through churches, local doctor offices, social services, senior resources centers, adult day care centers, nursing facilities, hospitals, on the internet, through social media like Facebook, local newspapers (if they still exist) that offer free ads for support group announcements. Make a simple business card that introduces your group. Ours has the name of the group, contact numbers, the day and times we meet and address. (On the other side, because we're an Alzheimer's group, there's a statement that says, "The person to whom you are talking has Alzheimer's and may or may not give you accurate information or remember what you have told them. If you have questions please speak to the caregiver with them.") Hand them out whenever you "feel" the need. Then be at the meeting place on time and ready to talk. Chairs around a table or in a circle work. Start talking about your experiences caring for your wife, the good and bad. Ask each man his name and who he cares for, what his major caregiving stress is, what is it he's learned, what is his joy? As people talk, let them go, don't try to be the center, your job is to keep the conversation flowing and not let one person suck up all the time or energy of the group. Every so often have a speaker come to the group. You can have someone come in from the VA to talk about what benefits are available to help with caregiving; someone from Adult Social Services to talk about how to qualify for Medicaid; from your Senior Resources about local services available; from doctors who practice in treatment of medical specialities like stroke, depression, or other areas that the men are dealing with; financial advisors about planning for longterm caregiving; tax advisors on how to pay and bill in home caretakers; home health service providers; emergency alarm providers; the local fire/emergency services on escape and disaster plans; skilled nursing facility providers; and on. Make sure they don't "sell" their product, but come to inform, and to teach the "lingo" of caregiving to educate the men so they aren't in a land of foreign language. You can get lots of free information to use and hand out at the government's site - National Institute of Health. They have publications on just about any subject for caregivers, and you can order them for free to be mailed to you. Some you can order online, but if you call them or email you can order in larger quantities. You will find many groups online about caregiving.  You'll find tons on the internet. Have good coffee and donuts. Don't be complicated, no dues, no money collection for flowers or cards, no lunches. I have to keep an attendance list because we're sponsored by an organization, but the members only share numbers if they choose. If you are doing this on your own, you don't have to if you don't want. I also keep an email list of the ones that want, to send monthly meeting reminders a week in advance, to which I attach special notes about other caregiver group meetings in the area, information I think they'd like to know about new research, stories about governmental rulings that affect their caregiving, etc. I subscribe to several online caregiving magazines, disease specific groups (like Alzheimer's Association, Alzheimer's Foundation of America, Multiple Sclerosis Association, Christopher Reeve Paralysis Foundation, Miami Project for a Cure, Interstitial Cystitis Association, Interstitial Cystitis Network,,,,,,,, and so many more. Finish the meeting, if you can, on a genuine positive note. Recognize when someone near the end has shared a positive story, or tell one yourself. Since it's your group, a prayer if you want could be appropriate. You will find this becomes something you will enjoy, you will look forward to and gives you a chance to shed some of your own pent up stress as you talk with others who are going down the same road you are. You aren't the only husband who has had to learn to cook, while his spouse watches and constantly says, "Now that's not how I do it, I think it's better if you rip the lettuce instead of cut it with a knife or with kitchen scissors," or "That's not the way you cut the potato in half, you cut it lengthwise, not sideways." Others too have heard that you can't dust with a feather duster, cloth, wool duster, microfiber cloth,, because they used blah, blah. My two favorite stories from two of the men in our group helped teach me lessons about how to better handle taking care of my mother in law and mom too. One of the men had a wife with dementia who went to a day care each day for several hours so he had time to do needed chores. She didn't want to "go be with old people all day", so he told her she was going because the place needed her help with the other people, something she didn't mind doing. Soon though, she wanted to know when they were going to pay her for this job, so he had to start giving the day care $25 cash in an envelope each Monday, which they would pay her on Friday, which she gave him when she got home for him to "deposit", which he did - right back to the day care on Monday. And that all worked fine, she was happy, he was happy, and the day care was happy - until she asked for a raise! So he had to give them another $10 to put in the envelope, which kept her happy until she could no longer "work". The other was a man who's wife had quite difficult behaviors, even though throughout her life she'd been kind and gentle. She was cranky, bossy, would cuss, hit, pinch, bite, punch, and say hateful things to him. He would get so upset inside he felt like he would explode, and he didn't want to say things he'd regret because he knew she acted that way because of the dementia, so he had a wonderful way to solve the problem. He took out the trash. He had a LOT of trash. Whenever things got too tense for them, when he felt himself getting tense inside, when he knew those words were bubbling to the top, he's say, "Honey, I have to take out the trash, I'll be right back," and off he'd go to gather it up and walk outside for a few minutes to take a break, clear his head and then go back inside with a calmer mind. Your group will be good Ken, just because you have years of experience to share with others who have less time than you in the journey they have been forced to take by circumstances beyond their control. Deborah

Date: 03/27/2012
Time: 07:40 AM


Begin with a meeting with the pastor of your church. Share your story and the importance of having a caregiver support group for men in your church community. Once you have his/her blessing, then make a request that the group be announced during the church service. Make the details for setting it up as easy as possible. The less work for the church the better. These details can be worked out in your meeting with the pastor. Your group will probably start out small but will grow, because I'm sure that you are not the only man who is caring for spouse. Once you are up and going, bring in outside speakers from your area and you have the makings of an excellent group.

Name: Chris C.
Location: Toledo, OH
Date: 03/27/2012
Time: 06:18 AM


Ken, contact your local Alzheimer's Association office. They will be able to advise you on setting up a support group, especially for men. Men now make up over 40% of caregivers, since we are living longer. Good Luck.

Name: Martha Backer
Location: Miami, Fl
Date: 03/27/2012
Time: 05:18 AM


Find a friend, speak with the minister/clergy, and set a time, then they will come. We met at the facility, in the evening, gave ourselves a name, but it was lay led, and worked through the problems and feelings of the day. (one rule was that everything said in there, stayed in the room)



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