Weave and Sew Dust

The Rage of Dementia

Many of you may be having to deal with a loved one who is starting to exhibit dementia/Alzheimers. There is a side effect of this disease that may catch you unaware, especially in the early stages. Unusual anger and rage is a sign of decreased brain function. Your loved one will exhibit an inability to let go of the perceived source of their rage, which can be accompanied by paranoia. If your relative had a volatile personality already, you may miss the change occurring. You are thinking that you are talking to someone who is rational, but in fact, they are not. The rage is usually focused at the caregiver, but not always. If your family had interpersonal problems when you were growing up, everything gets magnified. This disease can destroy families caught up in taking sides, instead of uniting to face the caregiving problems. Nobody wants to talk about this part of the disease. Commercials on TV show warm, loving moments with docile relatives or conversations with celebrities who have shuffled their parent off to expensive assisted living facilities.

I am writing to say that you have to hang on to love for each other and loving memories (and that means everyone in the family). You must let go of habits/prejudices formed when you were children/teens--this disease needs mature adult caregivers in order for all of you to survive.

Hip Hip Hooray

I sold my first commissioned painting yesterday in my new vocation of artist! So excited! This past summer, in the midst of my mother's slow dying, I had attended a workshop called "Called & Gifted" at St. Francis of Assisi Catholic Church. Not only did they discuss one of my favorite topics, the apostolate of the laity, but they helped participants to identify their charisms, gifts from God to use in the building of a better world. Following the workshop, we met with a one-on-one advisor and then met in small group sharing three times over the summer. The purpose of these gatherings was to evaluate whether the gift was a true charism or a natural talent. True charisms bring great joy and are given freely to the community of the faithful. My two identified charisms are pastoring and knowledge (they are a whole topic for another blog). BUT, I also prayed that if I had an unknown charism it would also be revealed. Also occurring this past summer, I led my book club in a discussion of the book, Women Who Run with the Wolves. One of the images so captured my imagination that finally I had to run out and get some acrylic paints  to attempt to paint what was spilling out of my head. Using one of my daughter's unfinished canvasses (apologies to her but I wasn't quite sure if I could even do what I was attempting and I didn't want to spend money on an expensive canvas), I began painting. Meanwhile, my grandson lay sprawled underneath me, playing with his DS as we discussed color in the different aspects of the painting. By the time of the 101st anniversary of my dad's birth (9/19/1909), I had painted six canvases with variations on theme around the same subject. So much fun!

Not only did God give me a gift of being able to paint on canvas but it seemed God was saying it was okay to be joyful in the midst of Mom's dying. When I fed her on September 17th, I shared all this and the slavic folk tale that had inspired me. Despite her dementia, she was engaged in my tale, perhaps because the story is also one of Polish heritage and she might have heard it from her storytelling father when she was a child. It was to be the last time that she ate her entire meal--her last supper, as she died ten days later.

I brought the paintings to a course I created and was leading at my parish called "Interior Life and Interior Design." One of my lady friends commissioned me to do a painting for her based on my 6th painting and one of the themes she loved. Its theme is grandparent love. Here is the painting I did for her---"The Sweet Spot #2"---

 
As Nicholas Sparks writes in The Notebook, a novel dealing with Alzheimer's, "Love, in these last and tender hours is sensitive and very pure" (212).

How perfect is God's timing!--Nonna's knowings

 

On grieving Mom's passing

It is the strangest thing. My mom's death seemed anti-climatic. Our last meaningful time together was on Friday evening, September 17th, ten days before she died. I told her a slavic folk tale while feeding her, a tale dealing with a young girl named Vasalisa and the old Baba Yaga mother who would teach her to know her inner truth. This would be the last time Mom ate every bit of her pureed food. I told her about my paintings, inspired by an image in the tale, and how they had given me such joy in the last three months. It seems to me in retrospect that God was showing me that it was okay to be joyful. To be joy-filled at a time of dying--such a paradox. Don't get me wrong; it doesn't mean that I didn't cry at her passing, let alone the thirteen years of sorrow in dealing with her dementia.

But here's the thing. I took her beautiful ancient hands in mine, these hands that had held me as a baby--hands that cared for me, bathed me, cooked for me, changed my diaper, protected me--and I told her that I loved her but it was okay for her to go to Heaven. With her eyes, she said "I love you, too." It was not unlike our parting when I went to college and she would go to Freeport, Grand Bahama Island to join Dad in their new adventure. I am "in joy" for her  because I know she is "in joy" with my father again and all the dear ones she has loved who have gone ahead of her in dying. I have been gifted to know this joy concretely through my paintings in the last three months.

Death was merely her boarding the flight to the real "Free Port."

The story "Vasalisa" can be found in Women Who Run with the Wolves, Dr. Clarissa Pinkola Estes.

A funny thing happened. . .

A funny thing happened on the way to visit my mom in the nursing home. As I stride the halls to her room, I always make it a point to smile and/or say a word of cheer to those in wheel chairs. Recently, a man was coming toward me who must have recently had surgery on one of his legs as it was all wrapped up. He was navigating the wheel chair on his own power and had a baseball cap on his head. Anyway, I gave him a big smile. Usually, patients will either have a blank stare or at the most, smile back.

I was caught by surprise when, not only did he smile back, but he doffed his cap and with twinkling eyes, he winked at me. Doffing one's hat to a woman is a courtesy from another time and I don't ever remember being a recipient of this sweet gesture. Life has its rewards.

End of life. Love without end. . .

My mom had a recent bout of pneumonia that a good round of antibiotics managed to stop. Every day,though, she seems a bit more frail and a little more remote. I don't know how much longer she will be with us but I do know this,--her love for me, my brothers, and the rest of the family will go on. For, as surely God is Love, a mother's love must have an eminent position in the Godhead. And God is always and forever. 

Nursing Home Humor

The funniest thing happened while visiting my mom the other day. Her roommate, Jessie, had come down with a cold and was taking some medication. She has trouble with her breathing--emphysema and asthma. Unlike my mother, she does not have dementia. We were chatting and she started asking about my family.

Jessie: "So, you have a brother, right?"

Me: "Yes, actually, two brothers."

Jessie: "Where do they live?"

Me: "One lives in Arizona and the other lives here in Raleigh."

Jessie: "And your Dad?"

Me: "My dad died many years ago." 

Jessie: "And so where does your mother live?"

(Did I hear that correctly?)

Me: Well, Jessie, she lives right in the bed next to you!"

Jessie & me: LOL

The wonder of modern medicine--good for humor.

Suffering's Fruit

In the introduction to Joan Chittister's new book, Cry Justice! Cry Hope! , this question surfaces, "What is the point of taking on the suffering of others in order to change an oppressive environment?" This is a chosen suffering. She writes, "To live for the lesser things of life is to risk not living at all. Real life is pungent with risk, with the willingness to spend all the intensity we have for one great, lasting moment of creation--like childbearing, like human liberation, like being a living witness to justice and truth and love and faith, the greater things of life."

I may not be called in life to travel to unknown places to share the plight of the downtrodden, but I have experienced shared suffering in my own backyard in my many years of volunteering with Habitat for Humanity . What I found in that experience is not unlike childbearing or my walk with my mother's slow demise from dementia. What I found is love. 

Angels sighted

My mom is spending her last days at the Blue Ridge Health Care Center having been moved from the rehab section to the nursing wing. It's amazing, there are angels everywhere in this facility.

I see them in the smiling faces of the staff who work amidst much suffering on a daily basis and, of course, the Hospice team that acts as extra eyes for Mom's interests. BUT, the most surprising of all are the angels I see in the solicitous words and faces of the three different women who have been my mother's "roommates" and who have plenty of suffering of their own.

The first was a sixty year-old African-American woman who is recovering from viral encephalitis and also has lung cancer. Mahalia would let me know if Mom was left too long in a wheelchair and how much food she had eaten. The next was a ninety year-old feisty Southern woman (who didn't want any company until she had her hair done). Ellen had broken her femur in a fall--the bane of the elderly. She told me that my Mom was singing beautifully one night and wondered if Mom had sung professionally (I really think it must have been a program on Mom's TV because the speaker is on the bed). Maybe, it was an angel singing to them both. Mom's current roommate is another African-American woman who is having difficulty swallowing and had aspirated some food into her lungs. Gloria has big soul-filled eyes that do her talking. One of her sweet daughters told me that when she visits her mother, she also checks to see that my mom is okay.

I do believe I have seen a huge angel population!

View from the Nursing Home

I have been spending a portion of every day at the rehab and nursing facility where my mom is being treated. I can see why it is imperative for every patient to have an advocate and for the advocate to keep a smile on their face. I have found the staff to be very competent but, without knowing my mother's history, there was the assumption made that she had Parkinson's Disease. This opinion was based on a drug started while she was in the hospital that was supposed to help her mobility and cognition. She doesn't have Parkinson's and the drug made her so drowsy that she could barely open her eyes. After straightening out this problem and getting her off the drug, I found that the staff wasn't always waking her up to make sure she got fed. This caused her to dehydrate. . .kidneys lost function, feet swelled up. . .They would tell me she wasn't eating. Every time I fed her though, she ate everything on the plate. She has always had a good appetite, but they didn't know that and didn't ask me.

I do commend the men and women working in this field. They are saints to look after elderly people like my mom, who has no way of telling them what is wrong. I am glad, too, that I am there to advocate for her.

What is wrong with this picture?

A friend of mine sent me an article recently in which a woman wrote about her experiences of being her 89 year-old mother's caregiver. Her thoughts on the meaning of love were not unlike my own. However, she started the article by listing all the ailments for which her mother takes drugs, "She takes drugs to thin her blood, to regulate her heartbeat, to purge fluid from her body, to elevate her mood, to lower her blood pressure, to jumpsart her thyroid, to ease her pain, and to help her sleep. She takes other pills to mitigate the side effects." What is wrong with this picture? I would like to open the conversation about the over-medication of the elderly and the moral dimension. When is chemical maintenance more cruel than a natural end of life? 

Quote from My Mother's Keeper by Melissa Musick Nussbaum