“Lewy, Momma, and Me” Blog

I ran across this blog today – “Lewy, Momma, and Me.”  The subtitle is:  “how to deal with Lewy Body with faith and humor.”  The author is Stacey Beisler, who is caring for her mother with LBD.  Stacey says:

“I am into year four of caring for my momma who has Lewy Body Dementia. This journey has caused laughter and tears and many long discussions with God. There are so many stories to tell, so I started this blog. I hope you find something to encourage you on your own journey through LBD.”

The first post is from June 2014.  Below I’ve copied a post titled “Back to normal” from August 2014.

Happy reading,



Back to normal
from the “Lewy, Momma, and Me” blog
August 31, 2014

As I have stated before, the words normal and Lewy can never actually co-exist, but these last few days have been “uneventful”. This translates to our new normal.

So I am weaning Momma off of Seroquel.  The 200 mg was too much and caused a bad week of being up all night with hallucinations and then non-stop talking the next day.  This drug is an anti-psychotic that can work well for awhile and then start to have negative side effects.  From my readings, if I take her totally off the Seroquel then we will have to deal with depression.  The advice is to get them involved in activities, keep them distracted, etc.  But since Momma is immobile due to her bad legs she spends all day watching TV in her living room lift chair.

Everything is a trade off. Depression versus up at 4 am wanting to call the police?  Hmmmm…tough call that one! Since sleep deprivation is detrimental to health, we are continuing the medication reduction.  You know how people talk about you can’t take care of others if you don’t take care of yourself?  TRUE.  I am so NOT a martyr.  I will ask for and take help wherever I can get it.  And I have loads of help.  It’s just that LEWY is around 24/7 and that times 52… well, you get the picture.

In the meantime, I am happy for this respite of “normal” and will rejoice and be glad in the day!!

“Do You Have Parkinson’s Disease or a Parkinsonism?”

There’s a recent article in US News & World Report on how to tell if you have typical Parkinson’s Disease versus parkinsonism, a term that includes the four disorders in our support group (LBD, PSP, CBD, MSA).

The article notes that “An estimated 1 million people are diagnosed with Parkinson’s disease, but some are misdiagnosed.”  Brain donation studies show that 25-30% of those we say have PD actually don’t have PD.

Here’s a link to the article.  It’s rather basic for most of our group members but still a worthwhile overview.


Do You Have Parkinson’s Disease or a Parkinsonism?
How to know the difference – and get help.
US News & World Report
By Kristine Crane
Oct. 27, 2014 | 9:34 a.m. EDT


“What to say to the dying: A hospice chaplain offers some insight”

This lovely article by a hospice chaplain shares his thoughts on discussions about death and dying.  Here’s a key excerpt:

There are four phrases that chaplains often offer to people who are dying and to those they love the most, to facilitate sacred conversations:

* “I love you.”
* “I am sorry for what has gone wrong between us.”
* “I ask your forgiveness for the part I had in any hurt between us.
* “I thank you for your role in my life.”

There is no need to wait for such sacred conversations.  We can have them at any time, and be blessed by the sharing.   

The full article is copied below.




What to say to the dying: A hospice chaplain offers some insight
ehospice USA
Author: Rev. Rona Tyndall
23 October 2014

In honor of Hospice Chaplain Week, Care Dimensions coordinator of spiritual care offers this commentary to explain the vital role of a hospice chaplain and the types of conversations and support they offer to dying patients and their families.

Perhaps like I, you like to eat pizza and watch movies on Friday nights.

One night, I watched, “Cleaner.” Samuel L. Jackson plays a former police detective who owns a company that cleans up death scenes.

The opening scene takes place at his 30th high school reunion.  His former classmates are all standing around awkwardly with drinks, making small talk about what they’ve been doing for the past 30 years.  Someone asks The Cleaner what he does.   He responds with the utmost respect and compassion necessary for speaking an ugly truth,

“I handle the remnants of heartache and disappointment so that people can go about the business of healing. Most people don’t know this, but someone dies in your home, you are left to clean it up.”

The classmates look confused.  The Cleaner shares in vivid detail, right down to the special mixture he invented from Listerine to un-coagulate blood.  Everyone is horrified; mouths agape, shifting from one foot to another, coughing nervously.  Noticing their discomfort, he tries to avert attention, asking one of the guys how things have been going for him for the last 30 years;

“Oh, married to the same woman since college, the kids are great, playing a little golf, just got a bigger house so my mother-in-law could move it.  It’s fine; she almost never leaves her room.  Some day she won’t come out.”

Then, a funny look of realization flits across his face and he says to the cleaner, “Um, can I have one of your cards?”  “Sure,” comes the response, “sooner or later, everyone needs us.”  One at a time, each person in the crowd steps forward for a card.

The opening scene touched me; it felt familiar.  People who deal with death know what it feels like to be a skunk at a lawn party.

That’s pretty much how people react when I tell them I am a hospice chaplain; initial discomfort that such service is necessary, followed by the realization that almost everyone needs hospice care for themselves or a loved one eventually, and finally the realization that the person standing in front of them, who tends to the very deepest of sorrows, does so from a place of deep compassion and love. Then, they ask for my card.

Love, loss and longing…those are the themes that I work with every day in my ministry.

I love my job, but the most frequent question I get asked is, “Isn’t it depressing?”  It isn’t.  It is sad, often, but not depressing.  Depression is isolating, lonely, hopeless.  Sadness (sorrow) is a point of deep connection, because as human beings, we all experience it at various points throughout our lives.  Joining in that emotion, and the emotions of love, loss and longing that drive sorrow (sadness) begets a deep heart-connection, one to another; the very antithesis of the isolation, loneliness and hopelessness of depression; the very essence of what it means to be in communion, in community, in common, with one another.

Do you know what people talk about when they are dying?  We talk about love; pretty much exclusively.  When we come to the end of our lives and the conversation has narrowed down to, “What was the point of me?” people reflect on love.  It is true that dying people never talk about the unfinished business at work.  We talk about the unfinished business in our intimate relationships.  We talk about the loves that made us whole; the loves that gave us joy and meaning and pride…and the loves that broke our hearts.  We talk about the ones that we loved well and the ones we forsook.  We talk about the intimate love of family and dear friends, and the love for humanity that compels us to reach out to strangers in our professional and private lives.

People are made for love.  We are made to love.  The measure of a life well-lived is always and only a person’s courage in loving.

But though our lives are meant to be a love story, we learn along the way that all love stories end in tragedy.  Whether through choice or through death, someone always is left to grieve.

Leaving friends and family and home for school or work or marriage is a kind of a death.  Broken relationships are a death.  Divorce is a death.  The end of a life is a death.  The grief that goes with any death is heartbreaking.

Heartbreak hurts!  The feeling of ripping and then aching in our chest, the initial agony of waking up crying, being utterly consumed by the sense of loss, feeling hopeless.

My eldest daughter loaned me a novel recently.  It was a light read.  Nevertheless, just as even the most simple people contain great wisdom, so does simple reading.

“When you drop a glass of wine or a plate to the ground, it makes a loud crashing sound. When a window shatters, a table leg breaks, or a picture falls off the wall, it makes a noise.  But as for your heart, when it breaks, it’s completely silent. You would think, as it’s so important, it would make the loudest noise in the whole word or even have some sort of ceremonious sound like the gong of a cymbal or the ringing of a bell. But it is silent and you almost wish there was a noise to distract you from the pain.”  (“If You Could See Me Now” by Celia Ahern)

Isn’t that the truth?

When a heart breaks, it is completely silent. But loss is the price we pray for living into our purpose, which is to love.  Love, loss, longing; they are all of one piece.  Life.

In the months following my nephew, Mark’s sudden death at aged 7, none of us could have ever imagined that his parents would smile again.  But then, unexpectedly, like a rainbow arching over the deep, wild, mysterious ocean, something struck my sister-in-law funny one night at dinner, and she laughed.  We never stopped missing Mark, of course. His life and his love and his death shaped our lives and expanded our souls.  But his mother’s laughter was testimony that there is yet hope and joy and life to be had after loss.  Something good is always waiting to be had, eventually.  The resiliency of the human spirit is extraordinary.  The human capacity to hope beyond hope is truly amazing.

Every day, I keep company with men and women and children who are dying and with their families.  It can be a time of profound grace, even in the midst of deep sorrow. Time to look back, pay honor to, and close out a life is precious time.

There are four phrases that chaplains often offer to people who are dying and to those they love the most, to facilitate sacred conversations:

* “I love you.”
* “I am sorry for what has gone wrong between us.”
* “I ask your forgiveness for the part I had in any hurt between us.
* “I thank you for your role in my life.”

There is no need to wait for such sacred conversations.  We can have them at any time, and be blessed by the sharing.

I leave you with a reflection on love, from Dr. Peter Kreeft, from “The Turn of the Clock”

“What to say to the dying: the profoundest thing you can ever say to a dying person is: I love you.  Not even God ever said anything more profound than that.”


Rev. Rona Tyndall is the coordinator of spiritual care for Care Dimensions, formerly Hospice of the North Shore & Greater Boston.