How to Support Loved Ones in Grief

ImageGrief: an experience that many of us don’t know what to do with or how to react to when we come in contact with it. Before my recent experiences with grief, I really didn’t have much of an idea of how to support others in grief. I had my therapeutic training, but that only goes so far and doesn’t always translate to being there for loved ones. It seems to me that in Western culture, at least in the U.S., we are so far removed from the concept of death that we become extremely uncomfortable when it touches us. For this reason, I wasn’t surprised when many of those close to me had no idea how to support me in my grief after the loss of my mother. For those that did give me support that worked, I was pleasantly surprised. For those that didn’t, I mostly understood.

Below I have compiled a few pieces of advice for those close to someone grieving. These are things that did and didn’t work for me while I was (and continue to be) marching down the grief highway. They may or may not be true for others!

  • Do call and check in regularly. Ask if I need anything, including practical things like food or childcare. Keep calling after the loss happens. Keep checking in and offering help, regardless of whether or not I call you back. Don’t expect me to call you back. Hearing your voice and knowing you are here for me is worth so much, even if I don’t respond to you.
  • Don’t say you “can’t imagine” what I am going through. I know I’ve been guilty of saying this to people before I experienced major loss in my life. Having now been on the receiving end of this one, I can see it really doesn’t help. For me, when I heard this, I felt isolated and separate, as if I was going through it alone.
  • Do express to me your understanding that death is a natural and normal part of life. A friend of mine simply said about my experience, “We are all going to experience that.” Even though he hasn’t experienced it yet, and maybe can’t imagine it, I felt his solidarity with my experience. I felt supported.
  • Do share your grief stories with me. This has been one of the most valuable forms of support to me. Seeing other people who have come out the other side of grief helps immensely.
  • Don’t pay me unexpected visits. Give me space to be in my cave. Call if you want to visit, and wait for my response.
  • Do show up for me, especially if you are a close friend. I was really dismayed that a person I had considered one of my closest friends barely acknowledged the loss I experienced, and simply did not show up. I even confronted her about it. She promptly apologized, explained herself, and then continued to not show up. I was especially disappointed because she is one of the few people I know close to my age who has lost a parent, and she is someone I have felt very comfortable with in expressing these difficult emotions in the past. I can only guess that she either A) hasn’t dealt with her own grief around the loss of her father a few years back and is therefore not comfortable showing up, or B) is not as good of a friend as I once thought she was. I haven’t felt very compelled to reach out to learn which one it is. Okay, excuse the rant! Any feedback will be appreciated.
  • Don’t give me the sad face the first time you see me in passing after the loss. Seriously, this is the worst. I’m at the grocery store, in a great mood, weeks after my mom died, her death being the last thing on my mind at the moment. And there is my friend, who sees me and immediately associates me with all things tragic. The overly concerned, “How are you?” Well, I was just great, until I ran into you! I am absolutely sure I’ve done this in the past. I remember bringing it up to a friend who’d recently lost her dad the first time I saw her out at a concert after her loss, and she told me straight up not to talk about it. Understand, with grief come myriad emotions. It is not just about depression and despair. For me, there has been a surprising amount of joy in the release of my mom’s spirit. So, don’t project your idea of what grief is onto me. Instead, when you see me, greet me with an uplifting smile. Let me know how happy you are to see me. Tell me you heard about my loss and are available to talk or help out in any way. Pay attention and respond to my response. If I just nod and smile and say thank you, move on to the next subject.
  • Do share your memories with me. In the time of my mom’s passing, family and friends gathered together on several occasions. It was such a treat for me to hear stories about my mom from those in her generation, stories I had never heard that helped me get to know her in ways I never did before. Another extended family member sent me old pictures of my mom. These stories and mementos are such a sacrament, like healing salve on an open wound.

That’s all I’ve got for now. Please gift us with your contribution to this list, because I know that everyone has a different experience with grief. Thanks for reading!

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A Little Thing Called Hope

http://ciderandfaun.blogspot.com/2011/02/hope-grace.html

“The very least you can do in your life is to figure out what you hope for. And the most you can do is live inside that hope.”
–Barbara Kingsolver

It’s been two months since I wrote, friends, and I’m not sure where to begin. My last post was about the death of my mother, which is an event that I continue to process. I feel a lot of relief that the hard part, the end of her life, the suffering is over. And I feel sad that she’s gone, whenever I realize it, because I seem to realize it again and again. I think on the one hand, I just don’t want to believe it. But on the other hand, she had been gone a long time already. The person I knew as my mom was taken by Alzheimer’s long before she died. Now, I am free to remember her as she was before. And I do feel her presence, all the time. My last thought here: the dying is so much harder than the death itself.

There are some other things happening in my life as well. Yes, my life, that continues onward, hopefully for a long, long time. The biggest news….I am pregnant! I am at almost 15 weeks now, and this is probably the main reason I haven’t been writing, because I have been sick and tired and tired and sick. Besides working and parenting, I just want to read or watch movies, anything to comfort me and take my mind off feeling like shit. So far, the prenatal appointments have been good. Strong heartbeat, low chance of genetic problems according to the first screening and NT scan. It has been such a scary ride for me due to my past miscarriage and subsequent partial molar pregnancy. I rented a Doppler so I can reassure myself at home between doctor appointments. I have used it twice so far, and have heard a heart rate of 150 both times.

The other big news has to do with my partner. Danny has a condition called retinitis pigmentosa. This condition affects his vision. He has always been night blind, and when I say this, I mean he is truly blind if he does not have good lighting. It also affects peripheral vision. People with RP get tunnel vision that gradually gets more and more narrow, depending on that person’s progression. For Danny, it has always been a struggle, as he needs a guide at night. He can never drive or go out alone after dark. In the winter months, he has to work short days in order to make it home before dark. He has been lucky for a long time, because his vision has seemed to be relatively stable rather than getting progressively worse. However in the last few years, his eyes have been shifting, but we mainly attributed this to him being in his 40’s and needing reading glasses. Then, in the last few months, he started getting blurred vision that’s been making it hard for him to function at work. Uh-oh.

This is the life of my little family for the last few months. In June, Danny started feeling the shift in his vision. It freaked him out, but he did not tell me what was going on for a couple of months! He thought maybe his eyes were tired, or he needed a new prescription, but nothing was helping. In July, I found out I was pregnant. It was such a surprise, because we hadn’t started trying yet. My mom was on her deathbed, and we were gun-shy after the last pregnancy losses. One week later, my mom died. There was the grief that hit like a tidal wave and the burial and the memorial and the gradually worsening morning sickness. Danny stepped up as the main care provider for our 4-year-old son.

About a month ago, Danny finally shared with me what was going on with his vision. We started researching, and found that people have actually been treating his very condition since the ’80’s with something called micro-acupuncture. They stick needles into one’s hands and the soles on one’s feet. I felt like kicking us for not learning about this sooner. A crazy synchronicity: Danny has always been into astrology. Years and years ago, his astrologer told him that traditional chinese medicine would help him with his eyes. Acupuncture comes from traditional chinese medicine, so go figure!

To make a long story short, we have traveled across the country to work with one of the handful of people who offers this treatment. We chose the man who has been doing it for the longest, and has trained several others. It is a shitload of cash, but we figure if it helps, it’s priceless. On the first day, Danny underwent vision tests for acuity and visual field. Then he had two days of treatment, with five sessions each day. Today was day 3. He had to do the vision tests again this morning to see if he is a responder to this treatment. With no improvement he would be sent home. To our elation, there was improvement! So, we will be here for two weeks to continue the intensive treatment.

It’s not a cure, but it can get him some acuity and peripheral vision back, and halt the progression of the RP. Danny is noticing the changes. Colors are looking brighter and everything is looking sharper. Hopefully, he will be able to continue driving and working on a computer, so he can keep his job. This is a miracle for us. Western doctors will simply tell you that there is no cure, you will eventually most likely be (at least legally) blind, and it is a good idea to learn Braille.

The town we were initially going to come stay in for this treatment was called Mt. Hope. The doctor moved to a new town down the road this week, but the vacation rental we found is on, can you guess, Hope Court. Sometimes, hope is a really hard thing to have, when you have been struck with the cruel limitations that are so very real in this life. I’m not saying I don’t have faith. Even when life hands me a bitter pill, I try to understand the lesson, and I am usually able to somewhat sweeten the bitterness with acceptance. At least, so far. One never knows what catastrophe may be around the corner.

But that’s the thing: one never knows what beautiful spirit-fulfilling blessing may be around the corner either. One just never knows. Right now, I am daring myself to hope. We are daring ourselves to hope. Our tears are out of gratitude rather than despair. I am not of a Christian faith, but as you know if you follow my blog, I am a spiritual person. Maybe it is that we are currently in the South, where there is a church on every corner I swear, and probably it is because we are seeing the possibility of the miracle of answered prayers in our lives right now, but I find myself wanting to run to the nearest hillside and yell out at the top of my lungs, “Praise the Lord!!!”

 

 

The Body Fails Us

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First your mind, then your body. Bit by bit, painfully gradually, faculty by faculty lost forever. I watched as everything faded until you were a mere shell of your body, limited to laying in bed, being spoon-fed, washed and changed by a husband who adored you until the very end.

I remember not long ago, you sang, “Da-da-doo-da-da,” with a smile on your face, playing a creepy crawly finger game with my three year old son, your grandson. He laughed, delighted in it, loving it. Loving you. We all do.

That’s why, three weeks ago, we decided to let you go. It was your request, before the disease hit, back when you worked at the old folks home, feeding people who no longer wanted to be fed. “If I ever get to a point where I can’t feed myself, don’t feed me,” you told us emphatically. We did feed you, for a long time, until we faced the fact that you weren’t going to get any better.

You had already lost most muscle tone, were constantly curled up in a fetal position. Retraction, the hospice visitors called it. Battling ongoing seeping wounds—bedsores, fever sores, not-getting-better sores.

For three painful weeks, we took turns sitting vigil with you, holding hands, rubbing your head, reading, talking to you. I told you how much I love you, how you gave me the greatest gift of all—life. I hope you heard. I hope you understood.

They started chopping the towering eucalyptus trees in the green space surrounding your back yard, making way for development. You sank deeper and deeper towards death.

“She’s going down with the trees,” my sister said.

Your husband leaked tears day in and out, falling into pieces and grabbing on for an anchor as he washed your hair, your body. Some days he felt too guilty to eat, wanted to join you in your fast.

As you faded into dreamland, a skeleton emerged, a husk that once housed your luminous warmth. The displaced birds crowded your back yard fence. A hawk visited one day, cawing and cawing for home.

Your cousin went on a shamanic journey and found you. “Get me out of here,” you demanded of her.

Yesterday you went.

Today we bathed you, anointed you in oils, and covered you with rose petals. We stood in a circle around the vacuum of your body and wept.

“Mommy, mommy,” I want to curl into a ball, and scream. Devastation of the severance of that primal bond. The first connection to this world—gone.

You are in a better place now. That is a cliché for a reason, because  it’s true. Your suffering is over. No more debilitated mind, no more failing body. Your spirit was displaced, flying in circles while your body anguished. Now you are home, in a place that can never be chopped down.

There is no tree. There is no nest. There is no body. There is no you.

Yet you are all around us.

The Afterlife

 Back when I was in my early twenties and did crazy things like eat psychedelic mushrooms, I once had a vision. I found myself on a rock in a secret place deep under the ocean. Around me sat all of my female ancestors, welcoming me with great joy. They were all lounging about on the rock, with no cares, very happy, and completely peaceful. It was light and warm and expansive there. I remember feeling like I had walked into a spa, this atmosphere of profound relaxation, and…immense relief.

I knew in this moment that this was the afterlife. I knew I would be welcomed here when it came time for me to die. In fact, around this same time period, my grandmother died, and I dreamed that I ran into her at an actual spa, and she was vibrant and joyful and free.

I don’t subscribe to any particular religion. I don’t believe in a fixed idea of heaven or hell. I do believe anything is possible, and that there is some truth and some falsehood to every religion. I have also come across people in my life who feel so familiar, and so much like immediate family, that I tend to believe in past lives.

The only thing that I am sure of though, is that I don’t know. I believe that whatever happens after we die is so amazing that it is simply beyond our comprehension. I do not believe it is possible for us to truly understand what happens after death while we are still in our physical bodies, because we have no context to place it within.

Even this vision is diminished when I try to put it into words. I do like to believe that it’s real, though. I like to believe that my mom, who will shortly pass, will land here, welcomed by her ancestors, nourished by this circle of women, and rewarded for all of her hard work here on Earth.

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Life is messy

“Life is supposed to be messy. Being human means you will get your heart broken and your fingernails dirty.”

― Kaitlyn Jane Mauro

It’s been a rough holiday season for me. The road has been bumpy, and I’ve often been off balance. At the beginning of this month, I was just moody and tired, like a bear. Shorter, darker days contributed, I’m sure, as well as some serious work stress. Then, my mom got sick, and 20 young children (not to mention 6 adults) were killed in an elementary school on the other side of the country.

Psychologist Carl Jung founded a theory of the collective consciousness. The idea is that we are all connected in our subconscious minds, kind of like we share one giant dream-mind. I believe it, because I’ve had too many weird dreams and psychic waking moments to believe otherwise. So, when I get moody for no reason, like I was earlier this month, I sometimes think it is because I am tuned into the experiences of the people around me. I sometimes feel and take on other people’s pain without realizing it.

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Boundaries are good. I am a firm supporter of clear boundaries. But, sometimes, life is just messy. At times, you have to realize we are all connected, and if one person is in pain, we are all in pain. And if one person is liberated, we can all feel a small undoing of tension inside our souls. Nobody can live alone in a castle on the hill forever. Eventually, it all comes back around.

Take a breath now. Inhale, and exhale. Realize you are sharing this air with all life on this planet. You are sharing this moment with an elder in a small village in Guatemala. You are sharing this moment with a young man in Hong Kong. We are all here on this planet, now, swirling and whirling and melding and separating and reforming and coming together, again and again. And we are affected by the blessings and curses laid on every single person alive, now. We are a cosmic stew.

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Now, onto lighter topics. For those of you who read my last post about my mom (https://foolishsagewisdom.wordpress.com/2012/12/18/my-mom-is-dying-of-alzheimers/) with Alzheimer’s, I am so overjoyed to report that she is getting better. She started eating again, though she still cannot walk, and probably won’t, ever again, honestly. She has also perked up a whole lot, which means she’s good and irritable half the time. It has been a good reality check to see how easily she can go, and I am so grateful that it looks we are going to be able to enjoy another Christmas with her.

And a brief follow-up on my post on generosity, I hadn’t seen the homeless man I wrote about for a few weeks, and I wondered if he was gone for good. Then Friday morning, I was running home in the pouring rain from a morning yoga class that is around the corner of my house, and there he was standing on the steps of the business next door to my house. He asked me if I could help him out with some breakfast, and I pulled out a few dollars. Then, I went inside, scrambled some eggs, threw them in a box of leftover home fries and a muffin, grabbed a napkin and fork, and ran the package out to him. I even made myself late for work doing it, but it made my day. Seriously. It was the absolute best part of my day. Here is the link to the original post: https://foolishsagewisdom.wordpress.com/2012/11/29/generosity/

May we all be blessed with abundance in the coming year. May we learn to live together peacefully. Here is to the coming of more light. Image

My mom is dying of Alzheimer’s

She was diagnosed six years ago, at the age of 62. It started with having problems filling out her charting at the rehab center where she worked as an occupational therapist. Her boss asked my stepdad if something was wrong with her, and the diagnostic process began. I attended the appointment with the cognitive psychologist. He led her through a battery of tests, including one where he asked her to do things like, “Touch your right hand to your left elbow.” By this time, she was already unable to follow the command. I went numb as the nice psychologist reported that she had “probable Alzheimer’s,” and then suggested that we get busy with Power of Attorney, advanced directives, and so on.

She went quite downhill quickly after the diagnosis. Something happened with her balance, and she started falling at times (later, we found out that the falls were linked to low blood pressure, and they disappeared with licorice). She drew inward, and more frail. Then, she stabilized.

I was scared as hell. It is hard to describe the feeling of impending loss of a parent. Can anyone help me here? It was as if my security, my solid base was ripped out from beneath me, leaving a big, gaping hole of nothingness…the void. I spent time with her that spring, recording an oral history. She was forgetting some things, but could still remember a lot. She drove for a few more years, until she was refused a renewal due to her diagnosis.

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Here she is in the earlier days, with her ever adoring husband.

You will see that in every picture I post, my stepdad Charles is by her side. He has been an amazingly devoted caregiver, an angel in the form of a man. They married in 1994, and had 12 happy years together before my mom’s diagnosis. Day by day, he has survived and taken into stride each gradual loss.

It hurts me to know that my son will not remember his grandma. He loves her now, and isn’t even fazed by the fact that she often scolds him. It’s funny, but the only coherent things I have heard her say anytime lately are things like, “No, little guy, let’s not do that,” and, “Let’s be quiet little guy.”

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This was 2.5 years ago. My mom appreciating her grandson.

My mom and stepdad came to my house hours after the birth of my son. We had champagne and cake to celebrate. This was three years into my mom’s Alzheimer’s. She was glowing and exuberant about meeting her grandson, and she sat next to me on the bed, stroking his cheek while he breastfed. At one point, she turned to me and asked, “Who’s this little guy?”

Over those next few months, we did a lot of hiking with my mom and stepdad. We would put Gavin in the carrier, and take long walks through the hills outside of the city. Really good times. Superb memories. Eventually, my mom stopped being comfortable climbing steep hills. She started to lean over as if to crawl. Then, any kind of ground that was not completely smooth and level became too much, so hikes were out, but we still took nice walks around the neighborhood. The walks became shorter and shorter. As of this week, my mom can no longer walk.

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Hikes in the hills and trees

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We had fun.

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 In the last year, the disease has progressed to advances stages. She is completely dependent on diapers now, and her leg muscles have atrophied. She can still talk, but very rarely makes any sense at all, and her words are starting to slur at times. A couple of weeks ago, she came down with a stomach flu, and grew weaker. Though the stomach flu resolved itself, the weakness did not. Charles ordered a wheelchair this week, and they are now getting visits from home nurses, health aids, and a social worker.

My mom stopped eating solid foods a few days ago, and is not drinking a whole lot either. Charles insists that she is giving up, and I believe him. She has been talking for a long time about not wanting to live anymore. She is skin and bones. A week ago, she was walking, though somewhat off balance. Three days ago, she was sitting on the edge of her bed, trying with all of her might to stand up. Her legs eventually gave out, and her body slid from the bed to the floor. Today, she is not even sitting up, and spends the day drifting in and out of consciousness.

Her eyes are usually glazed over and dull, except for those moments when she visits this world, and gifts me with a smile and loving gaze. Her cheeks are sunken in and her jowls hang limply. Moods pass over her face like weather in the tropics. For a moment, she smiles. A moment later, she tears up with a look of devastation. Then she gets agitated and defensive (although that is coming less and less with a weakening of her strength). It is only a matter of time now.

I feel incredibly grateful that my family is in agreement not to prolong her life by artificial means (feeding machines, antibiotics, etc.). We are staring down the bullet hole of her death, and are supporting one another. I am hopeful and terrified about my mom dying. Hopeful, because it will mean an end to her suffering, and an end to the immense burden on my stepdad (though he consistently claims to undertake it joyfully). Terrified, because it means I will no longer see her smiling face, hear her voice, or see the light in her eyes. I know the grief will overwhelm me when the reality of her being physically gone hits me. I think I will miss her voice most of all.

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This is how I will remember my mom, laughing.

I think losing a parent is like any major rite of passage into the unknown. Before it happens, you cannot even imagine it. You don’t even let your mind go there out of fear. Over time though, you get more and more used to the idea. Like labor, it builds up, until you get closer and closer to the edge of that cliff. It is so painful, but not more than you can bear, and the progression feels natural, like there is no other way. It is all as it should be. Just surrender, and trust. I felt this way when my son was coming into the world. Now, I feel this way as my mom is exiting. Hopefully, I will feel a similar peace when it is my turn to cross to the other side, as well.

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