5 Contemplations For Dementia Care Partners

Sooner or later, during one's mindful journey, one becomes faced with a wall. One has a choice then. To keep bumping one's head against the inevitable, or to stop and contemplate the very nature of the wall itself. The wall is about the impermanence of life, and our need to face that truth. Many times, whenever grief wells up inside, as it did earlier today, I call upon the 5 Remembrances:

I am of the nature to grow old.

I cannot escape growing old.

I am of the nature to have ill health.

I cannot escape having ill health.

I am of the nature to die.

There is no way to escape death.

All that is dear to me and everyone I love are of the nature to change.

There is no way to escape being separated from them. 

I inherit the nature of my actions in body, speech and mind.

My actions are the ground on which I stand.

Strangely enough, I find great comfort in telling myself those lines. It is as if the telling is paving the way for acceptance of what is to come, or what has already happened.  During my work with those in the early stage of cognitive impairment and also with dementia caregivers, I have learned to tailor the 5 Remembrances to more specifically address the unique challenges of the dementia journey. It goes like this:

I am of the nature to grow old.

I cannot escape growing old.

I am of the nature to have ill health of body and/or mind.

I cannot escape having ill health of either body and/or mind.

I am of the nature to die.

There is no way to escape death.

All that is dear to me and everyone I love are of the nature to change.

There is no way to escape being separated from them, in either body or mind.

There is no avoiding making mistakes.

I am doing the best I can and I hold myself with compassion.

May you contemplate those words often. And may you find comfort in them. 

6 Life Lessons From Ones With Dementia

I spent Thanksgiving Day in the dementia care community where I work. Throughout the day, I got reminders about what matters in life, and what doesn't. Take a guess, then read on . . . 

Mind

Few of us pause to appreciate the beauty of our human mind. Not until we are brought face to face with the reality of a mind stripped of some of its essential functions, do we become grateful for what we have 'up there'. The ability to comprehend and make sense of things, to speak and be understood, to make decisions, to have sound judgment, to move, to have emotions, to control them, to remember what just happened, to orient ourselves visually and spatially . . . So many things we owe to the healthy mind! Every day, I marvel at my mind's ability to function so well. And I also ready myself for the eventuality of it failing some day. Not getting attached, even to the mind itself, that which makes mindfulness possible.

Body

The body that once felt eternal, has a way of betraying the very old and the ones with dementia. One by one, systems start failing. Vision, hearing are usually first. Then the legs give way, and a series of assistive devices take over. The cane, then the walker, then the wheelchair, then the reclining chair when even sitting becomes too hard . . . Pretty soon, it is the arms and hands’ turn to go limp. Bodily functions follow, that can no longer be controlled. And close to the end, even swallowing becomes a challenge. Then heart, and breath. The body, just like the mind is a wonderfully engineered machinery programmed from the start for obsolescence. While it works, we tend to treat it with nonchalance. Seeing what happens eventually serves as a powerful reminder to appreciate this body while it is still working, and to also not cling to it too much. It cannot be trusted, just like the mind.

Success

Lawyer, judge, inventor, entrepreneur, surgeon, artist, psychologist, writer . . . they made a mark in society, and had the good fortune of having success, lots of it. Now, there is hardly a trace left of their previous life, apart from fading pictures of past glorious moments, and here and there respectful references to ‘Doctor this', 'Doctor that’. Time and the inability to hang on to memories have a way of erasing what once seemed so important. The world moves on, and the young take over. Seeing this process can help us not fall into the trappings of success, and conversely, failure. No need to get too excited one way or the other. 

Money

It does not matter how much money we make or have. Eventually, we all end up without the ability to enjoy or miss those things we used to cling to. This is not to say we should not plan for the future and make sure we have a comfortable home. It just means we will eventually have to let go of all our ‘things’. Those material possessions are not what matters in the end. Very few of the people I spend time with, talk about what they used to own . . . And the ones who do, all do let go in the later stages of their illness. My mother was one of those people. 

Relationships

Nothing’s for sure, including those close relationships we take for granted. Loved ones upon whom we may have counted for comfort in our old days, those people may die on us, or have a change of heart. The old man who believes that his daughter has died is not far from the truth. His daughter is still very much alive, but she has not visited or called him in years . . . And the woman who thought her husband would be there for her, is now a widow wondering where her beloved has gone. Relationships with those we love and who love us are to be treasured. And we need to expand our circle of love to not just our family and friends, but also anyone with whom we can have a meaningful connection, even if for only a moment. 

Self

This thing we call ‘I’ is not worth getting so preoccupied with. If we live long enough, that too will be chipped away, until we no longer have a sense of identity. The glue that kept our story going will have dried up, and now there will only be a vague sense of existence, and remnants from past habits, that’s all. Yet, most of us spend so much of our lives thinking, acting based on this concept of ‘I’, ‘Me’, and ‘You’. We worry so much about what happened to 'I' in the past, and what is going to happen to it in the future. Our carefully constructed identity is indeed just a story with a beginning, middle and end. For many of us that story will end way before our final years, and in its place will be a void waiting to be filled with new meaning, new ways of occupying ourselves, right there, right now.

What life lesson(s) if any have you learned from being around persons with dementia?

Top 5 Regrets of the Living

A dear friend died yesterday, someone I was supposed to do a project with. As always, the news of death rings the alarm for those of us still living. We may ask, am I living my life well?

For answers, let us turn to those at the end of life. These are the Top 5 Regrets of the Dying:

1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.
2. I wish I hadn't worked so hard.
3. I wish I'd had the courage to express my feelings.
4. I wish I had stayed in touch with my friends.
5. I wish that I had let myself be happier.

No need to wait for the end to become wise. Looking back on my life, I have my own list of regrets, mistakes made along the way that I wish to not repeat. Here it is:

1. I wish I had spent less time in fear
2. I wish I had spent less time in anger
3. I wish I had been more wise in some of my choices
4. I wish I had discovered mindfulness earlier
5. I wish I had understood loving kindness earlier

What is your list?

Grieve, And Don't Grieve

The mindfulness-based injunction to not grieve can be misunderstood. As I am waddling through my own grief, it is becoming more clear that one is not to indulge in the proliferation of grief related thoughts. AND, at the same time, one is not to ignore the waves of grief-related emotions that keep on surging from the heart.

'Do not grieve' is an impossible goal for the ordinary humans that we are. Hindrances in the unenlightened or partially enlightened mind make it such that clinging is present still, which leads us to experience great suffering when our love one leaves us permanently. This non negotiable goodbye brings our grasping tendencies to the forefront of our consciousness, and we get to feel the painful consequence from our binding and impure love.

If we try to hasten the 'not grieving' process, we run the risk of repressing the grief. Not a good thing, as I learned many years ago when I could not face up to the reality of my emotions when my father died. The dis-owned grief came back to crush me a year later, in the form of a disabling breakdown. We are to recognize the emotions that rise up, all of them, without judgment. We feel them, we give them space to be, and we move on with the next moment.

Conversely, we do not want to overindulge grieving thoughts. Such over thinking is only an expression of the mind-created self running wild. It is easy letting the mind create stories about the dead person, and ourselves in relation to the person. Wishful stories, guilt ridden thoughts, embellished tales . . . are all fabrications that keep us stuck in the suffering from unnecessary clinging. To let go of the urge to think such thoughts, I have found it helpful to contemplate Ayya Khema's talk on Metta, especially this:

The near enemy of love is attachment. [...] The whole problem lies in the fact that because it is attachment, we've got to *keep* those one, two, or three in order to experience any kind of love. We are afraid to lose them: to lose them through death, through change of mind, to leaving home, to whatever change happens. And that fear discolors our love to the point where it can no longer be pure, because it is hanging on. Now fear is always connected to hate. It doesn't mean that we hate those people, those one, two, or three, or four, or five, or how many there happen to be in the house, it means that we hate the idea that we could be losing them. So there's never that kind of open-hearted giving, without any demand behind it that a certain person is also there to receive it. Therefore it's always dependent, and as long as we are dependent, we're not free. This kind of love is doomed from the beginning and we all know that. We can change that kind of attachment to something else, but most people do not have that ability. Some people do, they manage; but it's a rare case. 

Do Not Hang On

My mother died earlier this morning.

My friend Christine shared this gift with me, and I want to share it with you:

This is the note left by Joan Baez's mother who died Saturday April 20th, just a few days short of her 100th birthday:

"Friends who want to celebrate my new adventure, please gather round. Don't grieve, for it's only a worn body that's leaving and the memory of any sad times goes with it. The good memories are in my spirit and my spirit is with you today. I'm in your midst, for there's nothing more valuable to me than to be with you my beloved family and my gracious friends.

Take a moment for silence and wish me well. I'll hear you. Then make the bottles pop. You know I love champagne almost as much as I love you!

Big Joan"

I may not be in the mood for champagne, but I do agree with the 'don't grieve' part. My mother was so clear in what she expected of me during those last few months. Let me go, do not hang on, this is what needs to be done now . . . 

A Lesson in Living, From the Dying

Back from visiting my mother, I have been met by a flurry of good news on the work front. Many seeds planted a while ago, are now sprouting all at once. Success is sweet, on the surface . . . Not far below, the pain of clinging has been tugging at my throat. For the overachiever that I am, it is hard not getting attached to accomplishments. 

Most effective antidote has been the remembrance of my last moments with my mom. Ever since I left her last week, I have been holding the image of her lying in her bed, almost floating, with only a touch of breath, here and there. A picture of complete letting go, and the opposite of what happens when the mind lets self-habits take over. 

Going about my day, I carry my mom in my heart. And I am grateful for the gift of her unwitting teaching. 

What Grief Can Teach Us About Love

Grief is not all the pain it appears to be. Grief as I have come to know it, is also an extraordinary opportunity to experience and see close up the suffering from clinging in its most extreme form. This is my mother’s parting gift to me.

Yesterday, when I arrived, I found her sitting at her usual table in the back of the dining room. Remembering our intense connection from two weeks ago, I expected at least an acknowledgment, a gaze of recognition, a smile. I was met instead with a blank stare. I sat by her side and waited. “Bonjour Maman. C’ est Margot, ta fille.” She looked up, gave me a look, and closed her eyes again. Aides had laid out dinner in front of her, and I was to help her.  It took forty five minutes for her to get one serving of the French version of Ensure down. I followed the aides as they wheeled her back to her room, and I kept her company as she laid resting in bed. Giving her kisses, stroking her forehead, reaching out for her shriveled hand did not produce the usual joy in her. Rather, it became clear that she wanted to be left alone. She is withdrawing from the world, I thought, and she is letting me know.

My mother mostly wants to sleep, and sometimes drink a little, that’s all. No more music, no more engagement, no more closeness, no more food. This is in direct contrast to the mother I knew who loved singing so much, and eating well, and being hugged and cajoled. That version of her no longer exists, other than in my memories, thoughts about the past with no relevance to the present conditions. Turning inside, I get in touch with the pulling away and the hanging on from lingering grief. What we call love is first and foremost attachment. The more we feel love, the tighter the bond, and the more difficult it is to let go of the object of our love. My mother is letting me experience what I first learned in words from Ayya Khema. True love is purified from all attachment, and demands that we not burden the loved one with the imposition from our clinging. It also requires that we reconcile with the universal truth of impermanence, that all that is born must die. Last, we must accept the not-self nature of our existence. The only thing that matters at this moment is to give this person who I have been calling my mother, the space to die at her own pace. Anything short of that is due to cause suffering for both she and I.

We tend to make a big deal of death. Watching my mother gently fade away, I am struck by the simple physical nature of end of life, same way I felt when my daughters were born, only in reverse. We are born, we live, we die, that’s all, and with each transition, we are given to a bunch a physical processes, of entering, being in, and leaving the body. At some point, the body gets worn out and starts shutting down. In the case of Alzheimer’s as with my mom, the end phase stretches over many years, giving loved ones a chance to work with grief and clinging not just once, but numerous times. One thing I have learned from this process is the need to appreciate all that is given at any moment. It is so easy focusing on what no longer is, as opposed to what still is. Before my mother lost the ability to speak a month ago, I did not realize how much it mattered to me that she be able to talk and respond still, even within the limited range of her late stage Alzheimer's narrative.

Now, treasuring the times sitting at her side and feeling her spirit, still flickering, and her breath also. I know soon there will be no life left at all. 

Saying Goodbye

It is now clear that my mother is dying, and a new phase has started. The nurse said it could be a matter of days, weeks, or months. The good news is she is now back home, in the comfort of her room. She recognized me when I arrived today, and is now lying in bed with her eyes closed, her breathing irregular and labored. I am planning to return to the US the day after tomorrow. This may be the last time I see her.

I draw comfort from the love that flowed so freely between us during the last few days. I was able to receive her love, in all its purity, and I know she got the same from me. It has been like falling in love all over again, an experience that blew my heart open wide, and that I will cherish forever.

Now, comes my part in allowing her to let go. Not insisting that she eat or drink, not smothering her with touch that is now painful to her, not burdening her with mental clinging. Sitting by her side, I go to my body, and find the breath, moving through much heaviness. The grief in my heart is for me to have only, and not share with her. Sitting by her side, I pay close attention to her breathing, and I practice receiving it gently into my own breath. The same way she birthed me, now I am helping her slip away.

Not Her Keeper

These days spent at the hospital with my mother are so intense. Yesterday, I looked into her eyes, several times, and we locked in, and I smiled and I reminded her it was me, and she smiled back, to tell me her happiness. She liked it when I played her favorite tunes, songs she used to sing all the time before her stroke. And she surprised me when she reached out for a magazine. I found myself starting to hope. 

Then came the dinner tray, and she did not make it past the first spoonful of the green puree. Same with the yogurt, and the applesauce. I asked the nurse, and she could not give me any reassurance. Yes, it could mean the end is near, or not. 

Today, I arrived to find her lying in bed and hooked up to a monitor, eyes closed and seemingly in pain with a frozen frown on her face. I was told her heart had gone to 150 in the morning and she was under close watch again. She did not acknowledge my presence. Her roommate was screaming for her children to come and take her. I thought, how incredibly stressful this must be for my mother to be subjected to so much. And I realized there was nothing to do, other than sit by her side, hold her hand, and remind her often that I was there with her. 

Ayya Khema says this about love: 

My attachment and my fear can only have a negative influence on my love. My children do not belong to me; they belong to themselves. I'm not their keeper, any more than they are my keepers. We are linked to each other, but not bound to each other - that is a huge difference. 

~ from I Give You My Life ~ 

Ayya Khema is referring to her children, but the same goes with our parents. I have been watching grief take hold in my body, a very physical sensation akin to being torn apart, literally. The stronger the bond, the more painful the parting, and there is certainly no stronger tie than between mother and child. It goes both ways. I am grateful for the practice to point me in the right direction. I am to feel the grief, fully, and relax around it, giving it space, and guarding the mind from adding more. My mother needs me to be at peace, and free from the anxiety of anticipated loss.