Tag Archives: caring for elderly parents

Having Arrived…

Shabbat Flowers.
Shabbat table and flowers on Paul Barchilon’s  coaster in the home of my father.

It has taken me a few weeks to actually get here. Here being Denver, Colorado in the condominium of my father and his wife Judy, may her memory be for a blessing. I was grieving leaving my life and my husband, my garden, the Redwood tree who is my friend off my deck, my bed, my community and so many other parts of where I live.

But now, Here I am, Hee Nay Nee, הנני

I am fully here and arrived in Denver. Even though I moved here in mid-December, it has taken me a little while to actually get and BE here. I was going through the motions; getting the meals cooked, the laundry done and attending to my father’s needs just barely. I say just barely because my heart wasn’t in it. I’ve been preparing for this time, for years, literally over 15 or more. I’ve known that there would be a brief moment between raising children and my needing to help care for my father, my mother, my beau-père and my mother- in-love. That time has arrived and regardless of preparing for it, the actual transition to it, has been, like all transitions, not so easy.

I felt so bad, not being happy to be here, not being happy to serve. In my piece S.O.S (Surrendered Open Serving)  I wrote about serving the Holy One with Joy. This work is serving the Holy One, while it is also serving my father, my family and myself. Doing it with joy, is the part that I wasn’t able to just swing into. I needed to grieve not being with my husband. He is more than my mate in this life. He’s my life-line and being physically near him and with him nourishes my soul and my cells in ways that are central to who I am and how I do all that I do. He’s the silent, behind the scenes, invisible partner in everything I do.

So, the adjustment has taken a little bit of time. Now, when I take my Shabbat break from my father for the two days I have off, I start to miss him and feel pulled back to him. He and I have formed a new bond, similar to the one that we formed when our roles were reversed and I was the infant with huge physical needs unable to meet them by myself. It’s such an interesting pendulum swing and one that so many folks are fearful of.

I am not afraid of being needy or not in control. I am prepared for it and expect it. I also don’t think it’s so terrible to lose control. Part of why I am less reticent than others has to do with my fundamental Emunah/Trust in the Holy One and in the goodness of folks in my life and in the world in general. I also have less fear than most people about what is on the other side. And I believe it’s our calling, all of us, in smaller and larger ways to care for one another on this planet and also for the planet. Some folks will be care-givers of the earth, or a water-shed or a species of frog. Some folks will stand guard over a forest or a flower or a polar bear. Some of us will care for wounded soldiers or special needs children or adults. Some of us will cultivate awareness in art and music and bring comfort or a wake-up call to others. Whatever ways we find to listen and honor the voice of caring in our lives, it is real and present and of value.

As I spend this truly precious time with my father, he is weak, not-well, tired, sad, frustrated about his bodily functions and process and also very much mentally present. He wants to share stories and talk about hard things in his life. He asked me to record him recounting the few days leading up to and the day of my sister Paula’s death. She died at the age of 21 months old, over 54 years ago now. He wanted to share this video with my mother. The two of them have now talked about this time. This is something they never had done and it has been painful, intense and beautiful all at the same time.

To me, it is a huge tikkun/healing. It’s also been that for my parents. It’s never too late to have healing in a relationship or in a fraught situation. My mother and my father, despite all the territory in their past, have found their way back to a very tender place with each other. A place (my sister’s death) that they are closest to and can share feelings that no one else can. Across the 48 years since they’ve been together, this time and this desire on my father’s part and my mother’s willingness to listen and attend to all of this with caring and compassion has created a bridge. That bridge serves everyone in my family and most especially me.

My sister Paula’s death has colored every facet of my life. She’s been very present for me recently. I’ve been feeling her suffering and confusion at being alone, or what I perceive as those feelings, as my father and mother re-live the specific details of her tragic death. Today, I will go to her grave and sing her some songs. Her grave is a very unique and special one that many folks recognize who live here in Boulder. I will honor her, as I have my whole life, by trying to live my life with more gusto and more aliveness, with a double dose of the blending of my mother and father and all that this shared combination of heritage and story means as it flows through my veins and muscles and heart.

 

 

The front and back views of my sister Paula’s grave marker, which was commissioned by my parents and made by DeWain Valentine. The rocks are traditional Jewish offerings that I bring when I visit to commemorate my presence and as place-holders for my memory being as long as a stone’s for her.

The other night at Shabbat in the basement of Rabbi Marc Soloway of Bonai Shalom, we said the Mourner’s Kaddish for a thirteen year old boy who died last week. Children dying is terrible and not how we want our lives or the lives of those we cherish to unfold. Death is just not something we can ever overcome or get away from. It’s not fair, it’s not easy, it’s not fine or pretty or simple. We do all kinds of things to try to wrap it up that way, but the reality of it is anything but wrapped up neat. In the Jewish tradition, we have space, communal space, at every prayer service, for all those grieving to be supported, to name their beloveds and their pain.

This naming doesn’t fix the wound, but it gives us a container, a shared vessel for our hurt to be in, and it helps us feel less alone in our most tender and broken times.

It takes all my resources to show up for this dying time with my father and with others as well. I have very little energy for conversations or interactions with folks, because all of me has to be present now for these precious moments with my father, my brother, my mother and my family. It takes all of me to hold the space as we walk on the bridge between this life of my father’s here and now and the destination he is moving towards. It takes all of me to stay present for the feelings I have about when he will no longer be in a body here with us to tell stories to, or enjoy an artichoke with, or laugh at something silly or remark on something so intelligently that I feel like a total idiot in comparison. My father’s intellectual capacity far out-shines most folks I’ve met. He is still so sharp in his observations and thoughts. I’ll miss that, I’ll miss it a lot.

Nicole.Dad.1.10.18.2
Papa et moi.

So now the river of tears flows, as it can only flow when I have some space and time to be by myself and not be having to attend to his needs or anyone else’s. I’m very grateful for my time off, even though I’m acutely aware that every minute I’m away is one less minute I will have with him………forever.

Being present for what is going on in my life is one of the ways I honor the Holy One and my family and the planet. I cannot know when my life will be taken. I cannot know when my father will leave or my husband or a beloved friend or my children. I pray I won’t have to navigate losing a child, as my parents have, and as so many mothers and fathers in history have had to, but I cannot know.

So, every day I hold my family in my heart, in my prayers and I endeavor to honor them. I do this with my friends and my community as well. Mostly right now though, I’m just right here, tending to my father as he falls further from this realm. I hope to help ease his landing on the other side as best I can. I’m not alone in that. My brother and my children have shown up in various ways, as have some of my father’s nieces, nephews and friends to remind him of how precious he is and how much he is appreciated and loved.

What more can any of us do for those we love?

Papa Painting
“Dad wanted to help! He is 94, and doing hospice at home. My sister and I are taking care of him. He has seen me painting tiles non-stop for my big commission, and today he asked if he could help. Took me a little extra time to clean his work, but he was just barely able to do it. He made three tiles. I told him you never know, someone could dig up his tile in 10,000 years. He liked that!” Paul Barchilon

Papa’s Perseverance, Pain and Power

Dad on Bike
My 94 year-old, WWII French Resistance fighter of a father, still resisting tyranny, the tyranny of a body aging. He is a hard-working, hoping to heal himself human and he blows my mind.

This post was written over the course of several weeks. I am now home in California:

Wednesday June 21st, 2017~ I’m relaxed at this exact moment. I just had a two hour Tok Sen Thai Massage at Siam Sensation. This is my first break in six days since flying to Denver on June 14th to take care of my father post his wife’s death on June 7th. My brother and his partner are spelling me for a few hours. It’s been hellish and hard and I’ve had no time to cry, really. Tears leak out in moments, but the work-load is pretty constant. Caring for a 94-year-old beloved who is in fairly constant emotional and physical pain is a full-time, many person endeavor. My father’s just six weeks from having fallen and broken his hip, then gotten hip replacement surgery, followed by a minor heart attack two days later and being intubated despite his DNR (Do Not Resuscitate) order and then having to be in a rehabilitation facility for a month and watch his beloved wife, of the last 18 years, Judy wither away and die. This is the territory I entered when I came to Denver for the second month in the last three. I spent all of April and one week of May here helping with the hospital stay and the transition to the rehabilitation facility.

It’s a week later, once again, getting a respite at the home of my brother, his partner and my daughter. Sitting in the back yard of my childhood home. My father gave my brother and his partner this home when he moved to Denver to be with Judy. This was where I spent half of every week as a child. It’s more lovely than it ever was when I was growing up. My daughter has filled the downstairs with the art of my grandmother, her great-grandmother Perla Barchilon, her grandmother/my mother Helen Redman, and her other grandmothers’ (Maren Frank and Rachel Heller’s) art is also all over, as is my brother Paul Barchilon’s and also my daughter’s own art. The place is clean and colorful and not-cluttered. It feels like home in a completely different way than it did as a child. My brother and his partner also live upstairs in the home they designed and it is completely fantastic as well and full of art, beauty and calm.

Papa blue robe
Painting of my father, by my mother Helen Redman, in the entry way to the downstairs, pottery by my brother Paul Barchilon, decor by my daughter

Is this  where we should move my father? Should he go into an Assisted Living/Nursing home, a thought that initially made him cringe (since starting this article my brother and his partner looked at many homes and found two that are within budget, barely and that my father also didn’t hate). We cannot afford full-time care-giving for him at his place through an agency. We cannot afford over-night care for him either through the agencies that provide that. With his funds, possibly a few hours a day could be managed, but that’s not going to cut it, in my opinion. Furthermore, he hasn’t been alone since March 30th when he fell and broke his hip. We are most likely, at this point, hiring someone to care-give outside of an agency, which is half the cost, which is pricey, but within his budget and allows him to live at home, which is what he wants. My brother will have to manage all of this and we will vet the person and make sure their police-records are checked, but it’s not the same as a family member.

Shira Home
My daughter’s clean and lovely living room downstairs from my brother’s place full of books and beauty.

My tears are still intermittent. The reality is that my father cannot live on his own, not yet, perhaps not ever. Despite two months of my time and life and the practically constant care and presence of my brother over the last six months, my father is not healed enough to live on his own. Both my sons have flown out to help for a week each and my daughter is also a regular presence in his life and home now. My Papa thinks he wants to be independent and on his own in his own home, but he’s had the loving and devoted presence of his wife in that apartment and since her death, he has had a steady stream of loving family. This will no longer be the case. There are kind and devoted folks in his building that care about him, but they cannot care-give him or be there in any kind of medically responsible way. He doesn’t want to live with my daughter in her study, which we would convert to a bedroom. He doesn’t want to live anywhere but his own home, who can blame him for that?

I haven’t had the energy to see any of my friends while I’ve been here. I cannot even make phone calls or emails much. The schedule at night has been my father needing help every two hours or so, with blankets, incontinence issues, pain management, difficulty breathing, thirst, etc… So, I’ve been in a pretty constant state of sleep deprivation, with nights off once a week or so on Shabbat if we pay the $300 it costs for one night’s care for him or when it has worked for my brother or my daughter to spend the night. Obviously not a sustainable situation.

Issac Nicole feet
Issac’s wounded foot taking a break, next to my tired feet from hours of moving things around in Dad’s apartment to try to get his office converted into a room that a care-giver/live-in could actually live in!

And I’m not even touching the sadness here, the pain of my father’s loneliness sitting at the table while I do the dishes or the cooking and he looks out the window missing his wife with every fiber of his frail body and incredibly clear and cogent mind. He told my son Issac and I, while explaining that he was going to speak to us as if we weren’t in the room so he could say what was on his mind, “I pretend she is on a trip or out doing errands and this lasts for a few hours and then I remember that she’s never coming home.” There were tears streaming down his face while he shared this.

Dad Post it
The note I found in Judy’s bedside dresser while cleaning things out in my father’s apartment.

This situation is so damn hard.

dad and Judy
Thanksgiving in Colorado a few years ago. 

And, my daughter said the other night, it’s not even bad really, because we are all loving with him and each other and he isn’t destitute (he taught French at CU Boulder for 45 years and has a good pension). He has options and we will figure out how to navigate all of this, with the capable minds and bodies of my daughter, my brother and his partner here in Boulder and myself and my family here in California. In the long-run, this story is a love-story, a family caring for each other and the person most in need with kindness, effort, intelligence and profound love. Whatever difficulties have been in my past with my father or in my brother’s past; my papa had a temper and he has never approved of my spiritual calling or my emotional nature (he thinks I should have been a lawyer!). Still, he has always loved us, gifted us with his time and caring, and been there for us in BIG ways. It’s our turn now.

Dad Waving
My father in a moment of less pain in the new recliner/lift chair in his living room at home.  I realized we needed to get him this chair, in the middle of one particularly difficult night. He can sleep for two or three hours comfortably here, and it’s his new favorite place to be!