This week’s program is another one that draws on my past and tugs fiercely at my heart. I write about my formative, wonderful, heartbreaking experience as a chaplain to Alzheimer’s patients in my online journal this week. When I wrote my book a couple of years ago, I had to recognize the men and women I came to love who had Alzheimer’s as being among my greatest teachers. And I found in Alan Dienstag the wise teacher and conversation partner about this experience that I’d been waiting for, without knowing it, all these years. He wrote to me afterwards that the conversation was very nourishing for him, almost therapeutic, and it felt that way for me too.

Like the best of conversations that delve deeply into particular human experiences and passions, as Trent noted after he heard the interview, it speaks beyond those particulars to the wider human condition. This is a mystery, and part of the reason I keep doing this work.

I’d also like to do a kind of shout out and thanks here to the Masonic Home and Hospital in Wallingford, Connecticut, where I spent several hours each week over 18 months that are now woven into the fabric of a radio program. Recently out of the blue I received an e-mail — through our show inbox — from Ray Cooley, who was the chaplain there and my mentor and supervisor through that experience. It meant so much to me to hear from him and to know that he’s listening!


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Reflections

Also, in the deepest darkness of this malady, there is a crack for spiritual enlightenment -- not only for the caregivers, but also for the patients.

My father suffered Alzheimer's for 20 years. We lived all the stages of the disease. Our great lesson our father left us was FORGIVE and FORGET. We knew we could forgive, but forget? It seems the lesson for humanity too, now, according to the increasing statistics of people living with Alzheimer.

Illnesses always make a lesson in our lives. They are a path to learn. If we only give the possibility of spiritual enlightenment during these times . . .

My father forgot everything. But, everytime he passed a mirror, he used to greet himself raising his hand; after that gesture, he always went to us to ask the same question: "Who is that nice gentleman in the other room? Everytime I go there, he is greeting me with a smile."

Of course, after we coped with the reality of "loosing" him in life, we laughed and understood that
-- in spite of his alienation -- he was the man we knew he was; and better yet, we realized he was seeing himself in the same way.

Even though he forgot even himself, he never forgot to go to make a prayer close to a picture of the virgen Mary in his strong catholic background he grew up.

(Nice remembering you father, and sharing it with others. Thanks for the lesson).

My 91 year old father has had vascular dementia (usually identified under the larger tag of Alzheimer's though different in many ways) since 2000. After failed attempts at housing my father in various facilities -- assisted living, then a nursing home dementia ward where they would only keep him if he was drugged due to his agitated behavior--I have been taking care of him for 7 months in my home. I'm 48 and single and have given up my job and financial security to do this, though I did not realize I was doing that at the time I made the decision. I just felt I needed to try to find some peaceful place for my father to live his final days.

My father no longer knows me, rarely recognizes my mother and lives pretty much in his childhood years. He did not even remember the home he designed and built (he was a carpenter) which is still our family home and where my mother lives. I often wonder, does he know who he is?

While there are good moments, it has been-- and continues to be--a difficult journey. The most difficult aspect is I feel I am taking care of a stranger and that we are "Invisible" to so many others. Friends, relatives, even my mother and other siblings, keep their distance. No one wants to "see" him in this state (he is generally very healthy other than the dementia). The greatest gift has been home health workers and a paid caregiver who keeps us going.

I am not against finding a "cure" for Alzheimer's but it seems too many focus only on the early stages and treatments when many of us are struggling NOW to care of a person in the later stages in Alzheimer's. We have few advocates to help us understand what is going on, and even less any focus to help the patient.

The "taking care of a stranger" feeling is one of the most rewarding lesson of dealing with Alzheimer's in our families. Even though it is one of the most difficult lessons of this human experience, "forgetting" what we knew about our significant ones, and accepting that they are not only our father or our mother, but also an ordinary human being that needs help and affection. That is the extraordinary connection we do through this learning. Paid givers do that because they have that responsibility, and many of them really care about others. No matter if others see us in this mission of helping others (family members or strangers), our solidarity with the needy (in terms of care) is a spiritual enlightenment to cope with the darkness of the disease.

Thanks for doing this program. My mom had Alzheimers and I helped care for her for several years until she died. I'm so glad I got a chance to help her at the end of her life, but I still find myself questioning whether I did enough for her.
There is so much more to Alzheimers than the pathophysiology. If our society and medical system weren't so oriented towards a pharmacological solution to all our problems, including Alzheimers disease, I think we could find much better ways to care for people.
I'm single with no children. I can't imagine what will happen to me if I develop Alzheimers disease. That's the most frightening aspect of the disease to me.

Take the good memories living with your mom with you, and release the others thankfully. You are not alone. "Someone" is taking care of you whether or not you develop Alzheimer's disease, whether or not you realize it or not.

Thank you for sending me the interview and essay by Alan Diensberg re Writing and Alzheimers. It was extremely nourishing for me to read and listen just now. I'm just back from a visit to my mum, who's in the early stages of Alzheimers. I find it extremely depressing, as we never had a good relationship, and it seems impossible to rectify this now, even though every time I'm going to see her, I think 'this time I'll make things different, I'll be patient with her, we'll talk about memories'... and so on. It isn't helped by the fact that she's very hard of hearing, but also, because she flatly refuses to accept that she has Alzheimers, or that there's anything wrong with her at all. She's so angry and upset at being stopped from driving, and refuses to see that it wasn't safe. I feel that so much more could be being done for her at present, but there just don't seem to be the services where she lives. She lives alone, and I worry that she's not safe, but is fiercely independent, and would resist any attempt to get her to move to sheltered accommodation. Thanks for letting me write this, and thank you so much for this site, which I stumbled on quite by accident, by a circuitous route, after the wonderful Irish writer John O'Donohue died. Love and blessings, Solasan (NE Scotland, UK)

Krista you are amazing! I have listened to your program since you first aired. The diversity of issues you bring to us each week is like trying to drink from a fire hydrant!! Yet in this diversity there seems to always flow this common thread of the great mystery of who we are . I was present at the deaths of both my parents- my dad was 40, I was ten; my mom was 56, I was 24 and raised my younger brother as a result. So the mystery of life and death has touched me since my youth.

I wait each week in anticipation of your next show. Each buoys me up as I face my own challenge of end stage heart disease that is inoperable and with 14 stents in my heart. I am being considered for a heart transplant. My life is now fairly physically contained to simple chores which exhaust me and give rise to angina. My heart disease also brought on a severe form of Fibromyalgia. But I still have my mind and you weekly presentations keep those glia cells humming! Your work elevated the status of the Peabody award you program so rightly deserved. There is almost a cult trailing behind you!! :)

I give these personal notes because I look to your show each week for another way to keep thriving amidst some very tough odds- all 17 of my family members have died of sudden cardiac death or stroke. I wake each day grateful I am still breathing. I love the Spring. It is so beautiful here in Utah right now with all the flowers and blooming trees and the white capped mountains.

BTW I have read "Here if you need me" and am plunging into Neibuhr. I have studied Derrida and Barthe and others in grad school so he doesn't scare me I just have to stop and think so often that it takes forever getting through one of his books. In fact I am going broke buying all the books that you recommend! And yes I have read both of your books- how do you find the time to write?! I am considering going to Anem Cara this summer myself for a retreat in poetry and dreams providing my heart is willing since I cannot even take short walks anymore. I very much miss John O'Donohue.

I tell everyone I know about your great program!!! Thank you so very much- Charles

I am much amazed i have checked out this particular website.

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