CREATING A CAREGIVER SUPPORT GROUP
As a dementia consultant, I know just how helpful it is for family members and friends of a person with any type of dementia to become part of a caregiver support group. I tell them that it can literally help to save their lives! The stresses caregivers are subjected to on a daily basis will usually lead to burnout and health problems such as hypertension, obesity, stress ulcers, and worsening of existing health conditions. It's often because these dedicated caregivers just feel as if they have no time to tend to a possible health problem of their own. I'm urging you through this blog to pay attention to your health and take steps to see that you remain healthy, because what will happen to your loved one if you die or are so incapacitated you cannot care for them? That is not an unusual scenario for stressed out caregivers. So please consider attending a caregivers support group near you on a regular basis. This is one of the best, free ways for you to help maintain your health and sanity. If you don't have a support group in your area, consider starting one! It's really not difficult once you have several people who are willing to commit to attending. Local churches, or local government buildings will usually serve as the host site for a meeting such as this for free. Here are some tips to help get you started:
- Poll local churches to find out if there are people who would be willing to join;
- Get contact information from those people and before the first meeting, conduct a small poll to collect data on what days of the week, what times, and how often they would be willing to attend. You want to ask for first and second choices for this information, and ask that they be willing to attend at least 3 or 4 meetings initially;
- At the first meeting, decide how long your meetings will be (usually 1 1/2 hours), as well as if you will be okay with some of the people with dementia being present along with their caregiver, or if they are willing to chip in a few dollars to have someone entertain those elders in another area during the meeting since it can make it a bit challenging if that elder understands what is being said and becomes upset. You might also wish to bring name tags for the first few meetings. Decide if there will be snacks/coffee, and if so, who will bring them.
- Set some ground rules such as taking turns being the "moderator" for the meetings. One or two months is a good time for that. Moderators make sure the discussion keeps moving; gently breaks in if someone is monopolizing the time; arranges for guest speakers if that is something the group wants; and makes sure the facility is open/closed and in order for each meeting. You must also all agree that everything said at the meetings will be held confidential--this is very important, and should be re-stated at the beginning of each meeting.
- Decide if you will have pre-set topics you will be discussing, or if you will just be talking about whatever is going well or not so well with you. Don't force people to talk, but encourage input and allow people the freedom to express their frustrations.
You may be discussing very serious issues such as assisted suicide, nursing home placement, grief over the loss of intimacy and the person you knew, incontinence, or even fear of a loved one if they're becoming combative. These are very difficult issues to wade into and sometimes nobody has an answer, but often just the telling of a frustration will help make it a little less powerful.
What you will begin to find in a setting such as this is comfort. It's really comforting to know that there are other people out there who are dealing with some of the exact same issues you are. It's also a comfort when you hear that your loved one is not as bad off, or doesn't act out in ways others might. The tips and advice you get are priceless. You may have been struggling with how to get your wife to stop using her underwear and use the "pull-up" disposable underwear, and when you bring this up at the meeting, someone may say "my wife was doing that too, so I just packed all her underwear away and only put the pull-ups in the drawer for her. When she got upset, I promised her we would go to the store to buy new underwear, so she was willing to put on the pull-ups 'temporarily', and then forgot all about the shopping. Now she doesn't make a fuss about it anymore." The time and frustration that suggestion has just saved you is a very small example of how you could benefit in a caregiver support group.
I have had countless clients, nationwide, who balked initially at attending a support group, but once they did attend, thanked me for pushing them to join. I have also seen many caregivers who continued to attend the meetings after their loved one had passed away because they still had so much more to contribute.
These support groups can help in countless ways and if you can just make yourself go to a few of them--or start a group--you will be so glad you did--and guess what? Your loved one will also benefit because you're not quite so stressed out! As always, let me know via email if you have questions I haven't answered in this blog about starting up a caregiver support group.