Friday, September 24, 2010

Caring Voices on Alzheimer's and Mindfulness

As a result of all my writings about Alzheimer's and mindfulness, I have received many moving comments from people caring for loved ones with the illness. So many pearls of wisdom, and love, that deserve to be honored and brought into the light!

I decided to gather them all in one post: comments from folks in various LinkedIn groups, in Zen Hospice Volunteers Yahoo Group, here on Mind Deep blog, at the Huffington Post, on Facebook . . . 
is there a general disease we could call hyperactivity of defining and labeling? and do we lose meanings in the progression? perpaps what we call disease, sickness, illness is nothing but the way of nature to balance. i mean surely many of us have heard that so called blind people (or others who lack one sense) have their other senses better developed in return. but are we interested in what their amplified sensory perception tells them about life, about us? or is it much more so that we have learned to define people by what they seemingly lack and then we stay with that definition, because ít´s more comfortable? my work with people who have dementia has lead me to the opinion that they do not lose something most important, but rather they regain something very important, namely the human ability to feel deeply. as far as i can see they develop a fine sense wether other people (e.g. we who are with them) are real, authentic. and they also develop something we all were capable to as children: the unwillingness to be not real, to be not authentic...honest. btw, yes, they work with me, too, maybe more than the other way around. only i get the money - Doris
I just visited my 98 year old mom. She lives on the Alzheimer's unit of Coventry Park in SF. The lessons of mindfulness have helped me enormously to even have a sense of humor when with her and the other residents. Staying present and not worrying about the future are most important well as finding a glimmer of humor - Ed
I agree about the gifts of dealing with Alzheimer's. My grandmother, who I am mainly responsible for, has it, and she has become so much mellower and more present than she ever was before. There is no choice but to be totally present with her, to let everything else go.... - Jess
I am reading through some of the Alzheimer's tagged posts, am eager to read more soon. This one made me cry. I suppose my heart is especially open this week, and especially to this... It is hard, it is painful. I feel gratitude to live so close to my grandmother now (she's in a retirement home near me) and to be part of her life. "It is that clenching in the most tender of places that creates so much of our unnecessary suffering." Beautiful... Such a good reminder, that I can stopping fighting my grief about various things and just allow the tender-heartedness. So hard sometimes - Jess
Thank you Marguerite for your timely article. It is a confirmation of my experience with my Mother who made her transition in 2005 after 13 years with Alzheimers.. It was a joy to experience the release of some inhibitions of her former personality and to be present with her in her now moments. She was more affectionate, MORE FULLY HUMAN in the middle stages of AZ, than at any other time of my experience of her as my Mother - Deborah
so often we don't stop to take people into our hearts and hear their stories. There's a beautiful woman at my mom's assisted living facility who always dresses to the nines - she's a sweetheart, 92 years old. She "crashed" a party we held there for my mom's birthday - my husband engaged her in talk and allowed her to stay when the facility staff came to tell her it was a private party. Apparently she tends to wander into other people's parties, but I think it was her way of connecting... There are many comings and goings at the assisted care facility - I am sure many of the residents there also know who's died and left or who's been taken away by ambulance. I try to say hello to the "regulars" when I come to visit my mom. It's not quite hospice, but as I've been a more frequent visitor it strikes me that here too, death is ever present and there's a tallying of staff changes and resident changes - Lori
It is easier for me to detach with non-family members -- when my mom says something odd and seemingly disconnected it can be very disturbing. But then I remind myself to come back to center, and be with her, and give her all the compassion I can muster. With an elderly friend, her demented ramblings were often a fun romp through time and space - of course her children didn't have the same perception - Tara
Yes, reminds my of my grandmother who went through this. So sad to see. It's hard to be with someone who doesn't recognize or remember who you are. It definitely brings up questions about what we really are. The person is still there, but many memories aren't. Is the person any less than what they used to be b/c of this? - Nate
yes this reminds me of the time I spent with my dad who had dementia before he died. You had to be prepared for anything (or nothing) when you went to visit. And to listen and offer what you could, as you point out. It was definitely an uncomfortable feeling driving toward the hospital. And then just being there for the visit. Always such good teaching. Disturbing sometimes. It reminds me of something my friend the Zen monk used to say, "be willing to be disturbed." - Carole
My dad also went down this road, noticeably changing over a ten year period. Dealing with my own sense of loss, realizing the extent of the comfort and support, my own dependency on what was being lost, was the first hurdle. For him, witnessing his own mental competency slipping away and maintaining a sense of self-worth seemed to be most difficult, at least in the beginning - 'Smiling Heart'
Thank you for you poignant, beautiful and cutting post. It cut through to the heart of the matter for me. It cut through all the judgement and impatience that I sometimes well up with when I realise that my dear mum just plain forgot or misunderstood or whatever the conversation we had. Whenever I have to go over and over things with her. Thank you, as I have spent time my self on many occasions been lost in mind agitations and fog, unable to meditate, sleep nor read. But somehow through my own inability to link the two together, I never thought of my dear mom and what she must be going through and what I put her through... "the importance of not setting her up" is foremost on my mind! - Miro
May you all be well, and at peace, and at ease, and filled with joy in the midst of suffering, yours and that of your loved ones.


  1. I so am honored to be quoted here, and grateful to you for this discussion. So timely, I just this week committed to spend every Wednesday, all day, with my grandmother, and am so grateful for the opportunity to know her as she is now. But also having a hard time with other family members who can not see any gift in this and seem to have just written her off.

    "She was more affectionate, MORE FULLY HUMAN in the middle stages of AZ, than at any other time of my experience of her as my Mother." This rings so true for me, is exactly what I have been trying to tell people.

    Not to say I don't still struggle with patience and even anger. But with as much mindfulness as I can muster (which might not be a lot, some days), I can only learn from all of it.

  2. Thank you Jess. Maybe we need to recognize that not all people are able to see the gift in being with those with dementia. And that's ok too . . .

  3. Thank you for sharing all these beautiful reflections Marguerite, and for all the work you're doing to help people see the gift in this illness.

  4. Thanks Katherine. I feel so moved. Everyday, everywhere, people tell me stories now. Some funny, some very sad. All telling me there is work to be done.