Nuns in Dementialand

A couple weeks ago I talked to a nun about Alzheimer’s disease.

She started the conversation by telling me that she was a sister and took care of several sisters with Alzheimer’s. I thought she was going to ask me a question about the genetics of the disease, but I had it all wrong.

It took me way too long to realize that sisters meant…sisters. In my defense, she wasn’t wearing a habit, and she had told me that she liked my sparkly earrings (which certainly did nothing to tip me off about the nun thing). Honestly, her appearance did not meet my expectations of what a nun might look like. For instance, she was wearing cute shoes.

I’m not sure what I expected a nun might have to say about Alzheimer’s. Maybe I expected she’d have found peace with the disease. Maybe I thought she’d be able to shed some light on the suffering I had seen among individuals with dementia. I expected something insightful that would help me to find meaning, religious or otherwise, in Alzheimer’s.

I didn’t get it from her.

“It’s just awful what my sisters go though,” she told me. “I just hate it.”

She told me about one fellow sister who in her fifties had gone from gentle and loving to anxious and even aggressive. It occurred to me that Alzheimer’s was a terrible disease if it could, literally, make a nun aggressive.

She talked about another nun who got confused while driving and ended up in the wrong lane. She hit a parked car. Fortunately, no one was injured, but it was left to her sisters to tell her it was no longer safe to her to drive. That did not go well.

She told me about the financial issues involved in caring for members of their community with Alzheimer’s and related dementias. I grew up Catholic, but this was something I had never thought about. The mean age of nuns is increasing, and this is creating an issue in providing adequate care for older nuns who might have significant health care needs.

I thought about my conversation with her all day.

I knew that nuns were obviously not immune to Alzheimer’s and other dementias. In fact, there’s a whole book devoted to topic called Aging with Grace (by David Snowden), which focuses on an Alzheimer’s study that uses nuns as participants.

It’s just that maybe I thought a nun would tell me that God has a plan…or that there was a reason for all suffering…or that somehow Alzheimer’s wasn’t that bad. In a way, she made the disease seem worse. I mean, if a nun says she hates something, that something must be pretty horrible.

Yet, a part of what she was talking about impressed me. Here was a family that was there for its own. Women, most of whom had never married or had children, were relying on each other in sickness and in health. And, in many ways, they were caring for each other in ways I don’t always see in biological families.

I may not be ready to run away from home and join a convent, but I was impressed with the sense of community she described. In fact, she and several of her sisters had come to listen to speak because they wanted to learn more about Alzheimer’s.

It occurred to me that she despised Alzheimer’s so much because she loved her sisters so much. It broke my heart as much as any person journeying through this disease with their parent or any woman navigating it with her spouse. Family is family.

She didn’t tell me that we needed to pray about Alzheimer’s, although I’m sure she would not argue with prayer. She told me that we need to raise more money for research for a cure. She said that we needed to do more education on the disease. I liked her a lot. I liked her so much that I offered to come to the convent and do a seminar on dementia care.

I gave her my business card, and I really hope she contacts me.

 

 

 

 

4 thoughts on “Nuns in Dementialand

  1. Hey, Elaine – this one hit home with me because I spend a lot of time at a beautiful monastery in Rock Island, and I know of at least one of the sisters who is caring for her biological sister with dementia, and she’s always impressed me with how patient and loving she is with her sister…probably more that I would be with one of mine!
    Would you mind me asking if they would like to have you come do a seminar there?

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  2. It’s not always what we expect when we meet caregivers or those unfortunately diagnosed with this disease that yes, I hate as well. It’s not that I or my 24 year old daughter that is my caregiver, speak out to bring attention to me individually or our ongoing battle in a hopeless chapter that never ends well. We speak, do the walks, share on social media and other platforms, because it’s about the future. Yes, a better understanding would be wonderful for me and others right now, but that can only go so far. If all of us don’t start raising multitudes of awareness and demand the fight to find a cure, our future generations will not have it any easier than we do now. My daughter is destined down the same path, as she carries my gene – early onset of Alzheimer’s, and that’s what breaks my heart. That’s what pushes me to still advocate and educate for her, others and especially for those who have no voice. Besides, the many many others who truly do not think they will ever end up with this disease or that’s it an elderly persons problem. If we don’t correct this false information that’s out there, my 24 year old doesn’t have a shot of a longer and healthier life. I’m now 46 and I’ve been battling this since 2010. It’s not the diagnosis that’s been the worse. It’s the uneducated and ill informed doctors and general public that has been the hardest. Yes, pray. But I agree. Education and a cure. You truly cannot know what this does to a person and their family unless you live it. It’s unfair and unjust. It’s heartbreaking. Thank you again Elaine. My daughter and I continue to read your blog and it’s been a true gift in its wisdom and your own experiences.

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