Frances (Fran) Bassi and I met on a brisk winter’s day at the senior center where she and her husband Bernie attend support groups. One group is for those living with dementia and another group is for caregivers. They meet simultaneously so each person has the opportunity to be heard, supported and hopefully enjoy the simple gift of camaraderie.
Fran is 79 years old and was diagnosed with dementia 3 years ago. She has a warm smile with a sweet demeanor to match. Bernie is charismatic and direct. He is so eager to be helpful to Fran, he repeatedly answers every question directed to Fran without giving her the opportunity to speak. At one point, Bernie realizes this and apologizes to Fran for treating her like a child. Fran demurs, clearly preferring Bernie to do the talking, and said, “You’re good. You’re supportive.”
I asked Fran what suggestions she would offer to a newly diagnosed person. After a long pause, she replied, “I don’t know.” Bernie said, “I would suggest getting as much help as you can. If it gets to the point, don’t be afraid to ask for help. There’s a lot of organizations that will help you. We don’t need it, but there is if it gets to that point. You can ask for help. First of all, I wouldn’t hide it from your family. I would suggest that you let everybody know what the problem is so that if you need help, you’ll get it. I haven’t thought of it much. I would strongly suggest getting a support group, because sometimes if you have a family member, they don’t know how to handle it either, and they come to the support group, and they can find out what it’s like and what it’s going to be like.
I would suggest to a caregiver that you have to take time for yourself. If you have a person that can’t handle anything, you have to get someone to be with them so that you can have some time to yourself. I don’t have that problem, because I hunt, and I get out in the woods. I do things out in the yard, so I’m always busy, but if it ever comes to the point where I have to be with her all the time, then I have to think about, well, do I need to get somebody in to be with her for a while? I think I would strongly recommend that to anybody that’s a caregiver.”
I asked if Bernie had any advice to give other caregivers and he said, “I think you really, really, before you say anything, you have to stop and think about it. I’m quick. I have a quick temper. I’m Italian, so that probably explains it. You’ve got to stop and think. That goes along with anything in life, I think. You can never take back what you say, and once you say it, it’s out there, and you could hurt somebody. In a case like that, you just have to be extra patient, which I’m not all the time, I guess.”
Probing a little further, I asked what’s been the hardest part. Bernie immediately said, “I think what’s a little frustrating for me is that she doesn’t have the urge to do things that she used to do.” Fran said, “I try not to think about it, that it’s different. “ I asked if she had anything to add and she said, “Not much. I feel like I can still do things. I don’t find it’s a big problem yet. I don’t know. I know what could possibly happen later if it gets worse. I don’t worry about it. I don’t. I’m not a worrier.”