A reader asked (in Dutch):
As a social worker in a nursing home I had a conversation last week with the wife of a gentleman living on our psych-ward. This lady appeared not to need the most common forms of support in dealing with the loss of her husband through dementia. She didn’t need information from Alzheimer groups or the like.
I had a very special conversation with her in which she told me that she wanted to know what the lesson was she needed to learn from this situation. This meeting set me moving as well. So, I searched online and came upon your site. You mention your grandmother and an outing, beyond that it doesn’t seem relevant, but perhaps you’ve investigated the look at this issue from the perspective of theosophy or antroposophy? I’m conscious of the various sides of the issue, on the one hand the suffering of both partners, each from their own perspective and life work. On the other hand my own curiosity in a non-clinical look from various perspectives that might offer support and lead to a more meaningful approach to the drama that’s called Alzheimer’s.
As far as I know there isn’t much in the theosophical literature about dementia or Alzheimer’s. My personal approach is pretty medical. The brain dies, so that ‘higher mental functions’ disappear first. That is: abstract thought gets harder, talking becomes a problem in a later stage and of course best known: memory loss.
I notice in my grandmother that the emotional stays strong a lot longer. I think it’s on account of this that some people report that they get a second chance at a meaningful relationship with their parent in those last years. The thinking mind is less in the way so that it becomes clearer what the underlying emotion is. In my grandmother for instance – it’s a bit sad for family closer by, but she talks most about those two sons she quarreled with most over the past 50 years.
I think it is probably pretty universal: those who have an ambivalent relationship with a parent will be likely to stay away when Alzheimer’s manifests. However, there’s a chance that the disease creates an opportunity to make up. On the one hand it’s no longer the same person you’re facing. If you go without wanting to, perhaps you’d better not go because they’ll feel that emotion of yours without a doubt.
In my grandmother it’s clear that words become less and less important. The tone of voice, a touch, holding her hand, music – that registers. Don’t expect a conversation on something meaningful anymore.
This is true to the point that with her best friend in the nursing home my grandmother chats away. However, if you listen to the words both ladies say, they’re not making any sense, nor is what they’re saying related to what the other person is saying. However, they’re having a blast. I guess that’s because body language, tone and all that is just what it ought to be when talking to a friend.
I’m not sure what any of that has to do with spirituality. I did however use my relationship with my grandmother as an example during a lecture recently about the Buddhist concept of ’emptiness’. In order to be able to deal with the changes a person goes through in Alzheimer’s, you have to not be stuck in the way they were 10 years ago. You have to be with them as they are at that moment. I care enough about how she was 5 years ago to be sad when I go home after a visit, but I can also enjoy the beautiful moments now.
As for any spiritual lessons to be learned here, I guess they follow from the above:
- Learning patience for someone with declining mental abilities
- Living in the now, instead of with the image you had of someone
- Being aware of how you respond emotionally, so you live more from your center
- – and if you’re lucky you can heal some of the wounds in the relationship
Based mostly on my personal experiences with alzheimer’s disease, in my grandmother
I can’t talk about Alzheimers, but I do have a neighbour, Agnes, suffering dementia of some sort in that even in the middle of a conversation she will tell the same story over and over, unaware she has already told it. Her husband is always fretting about her extreme forgetfulness, not willing to let her walk into the village for fear she’ll forget the way home.
But he either hasn’t been paying attention or classifies experience differently from me. You said, “In my grandmother it’s clear that words become less and less important. The tone of voice, a touch, holding her hand, music – that registers.” I’ve noticed something similar about Agnes. She has perfect grasp of the present moment and has no problem with physical surroundings. It is the cultural, man-made stuff (like language) that is slipping away.
I have no worries about her walking around in the village she’s lived all her life. She is quite capable of looking after herself. Crossing roads is not a problem because the cars are immediately present and the need to keep out of their way is obvious. Her problem would be remembering which side of the road the cars drive on, for instance.
In Taoist terms, her “human mentality” has all but slipped away. But because she has always been a warm, generous, open person with a strong faith in Jesus, that side of her is coming more and more to the fore. The Taoist would say her primordial nature is shining through.
Whatever you call it, its good to see. Even if she does need watching when she has a pan on the stove!
Personally I think it’s perfectly reasonable for your neighbour to worry about the safety of his wife. One of the first signs of Alzheimer’s in my grandmother, before the diagnosis, was that she was no longer to be trusted with traffic. She’s in a closed ward now, so we don’t have to worry about that sort of thing anymore, but really – it’s not one or the other.
My grandmother also has trouble recognizing things. Like: a table, a picture of her late husband, like writing, like her daughter coming to visit… That means that navigating the world becomes very difficult indeed. She may still know I mean her no harm, and am ‘familiar’ in a sense, that doesn’t mean she knows who I am. And the knowing what things are is partly what keeps us safe.
Of course I don’t know how the traffic is in that village of yours, but wandering aimlessly and not getting back is a very common Alzheimer problem. In a village it may be manageable, because everybody knows who she is. Still, if your neighbour is worried, I would think he has good reason.
I’m wondering if you or your questioning reader are aware of the new book by Olivia Ames Hoblitzelle, Ten Thousand Joys & Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s (Tarcher/Penguin just released it.) I helped to develop and publish the first version of the book (The Majesty of Your Loving, same subtitle). It’s not only a beautifully written memoir which is stacking up awards right and left, but also the only book of its kind that deals with the spiritual side of caregiver challenges, and of what happens to the mind as the brain is failing. This book is a fascinating examination of that, as well as an inspirational — and quite practical — sharing from one of the wisest and most brilliant writers I’ve ever had the privilege to work with.
Hello,
I just discovered you/your website via Twitter (post from Rebel Buddha), and noticed this thread about Alzheimer’s/spiritual growth. I’m currently working with an author who just wrote an incredibly poignant book about this subject called Ten Thousand Joys & Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s (Tarcher/Penguin, 9/2010) by Olivia Ames Hoblitzelle.
Essentially, the book follows the journey of Olivia and her husband Harrison’s (“Hob’s”) diagnosis and ultimate decline from Alzheimer’s disease. Infused with the wisdom from a shared psychology background, as well as from years of Buddhist practice and study (Hob was an ordained senior teacher by Thich Nhat Hanh), Olivia’s powerful account provides both spiritual and practical approaches to anyone dealing with caregiving issues, and mental loss or diminishment of any kind, such as:
· Spiritual perspectives on living with illness, death, and dying
· Self-help sections provide practical guidance, hope, and inspiration
· Caregiving as a spiritual discipline
It’s a great book for anyone who is interested in this subject, and offers an inspiring perspective about “consciously aging” and gifts from adversity.
Thanks for your website and reviews.
Sincerely,
Wendy
A dear friend’s memory loss has become significant and challenging for her. As her memory fades, however, there seems to be a spiritual shift occurring and her mind seems to be opening like it never has before. In contrast to me, my friend has never recalled dreams and has always claimed to have no sense of intuition. Regardless, one evening, while lying in bed, a vision of her father appeared in front of her. She said it was as if he was alive again and was standing at the foot of her bed as she leaned back on her pillow. The image of her father shook her to her very core because he wore a stern look on his face. Her father died when she was 14 years old and she loved him dearly. Now, at age 79, my friend has suddenly found herself reflecting and wondering if there is something that she still needs to accomplish, if there is still a lesson to be learned, before she herself passes. Though her memory about everything else seems to dim, her father’s image remains indelibly etched on her mind. If I understood your blog correctly, the wife of the Alzheimer’s patient was wondering if there was a lesson to be learned from her difficult situation. This reminded me of my friend who is realizing that life is a school and that the most important things we can come away with are life lessons.
In my perspective, the goals are to love, to rise above your fears (for example, fear of loneliness, abandonment, of your own death), and to grieve briefly. Finding the strength to detach emotionally allows your loved one to ascend to the next realm and helps your own growth in this world. Have faith and know that you will be reunited with your loved ones again on the other side. Our bodies may be temporary, but our spirits keep going. Light, Love and Joy, Elizabeth Rose, http://www.diamondlantern.com/