My daughter Marissa is completing an MBA degree, of which her capstone project is the last rock to roll up the mountain! She and her group are planning to create an organization to support dementia caregivers. As a first step, they want to gather a sense of the demand for a dementia caregiver support service. To this end, they have put together a short survey to determine what kind of service would be helpful to caretakers.
Marissa’s project is, of course, close my heart. She (and the other members of our family) can clearly see how exhausted Peter gets, even though I am still able to do many everyday tasks by myself. My children and their spouses are a great support to him. Talking to them during my (voluntary) absence, he gets the relief of sharing his difficulties with great listeners and problem solvers, should he need help. I would wish for nothing more than that the kind of help he receives from them and our friends could be available for every single loving and stalwart person who takes on the care of a loved one with dementia. But there may come a time when Peter might want to get support from people outside of our circle so as not to put extra burdens on our kids. The kind of organization that Marissa and her group envisages—which might include personal coaches versed in dementia care and/or in-person or online peer support groups—might be just what he needs when my abilities have shrunk even more.
If you are (or formerly have been) a caretaker for someone with dementia, Marissa and her group could really use your experience and hard-earned wisdom. If you are willing, please fill out the survey. It would also be very helpful if you could write to me in blog comments (below) or by email (firstname.lastname@example.org) about your experience and/or mention the areas of caretaking that gave you the most difficulty. If you belong/ed to a support group or receive/d support from a family member or friend, please let us know what type of support was most helpful. You could also tell us what types of support you wished you had but that was not available. If you just want to tell me your story and not have your information used in Marissa’s project, please just share with me—I would like to learn from you just for myself or just be a pair of ears that will listen to you or a shoulder you can cry on.