Being Present 

Taking the time to be truly present with your loved one while they are suffering can be incredibly challenging.  Witnessing your loved one’s physical and emotional pain can create feelings of frustration, anxiety, anger, depression in the one caregiving. Embracing those difficult feelings and remaining in the present moment can serve as an antidote for your own suffering. Calmness and peace can prevail during the difficult times.

I remember the two months that Bryan, my partner, was on the palliative care unit at the Naniamo hospital. During that stressful time, I committed to a daily meditation practice regarding staying in the present moment. I found a level of peace that allowed me to serve Bryan in those final weeks with grace and love.

I continued my meditation practice when I returned home to Calgary to act as my Dad’s caregiver. It wasn’t easy watching my Dad’s physical abilities deteriorate but I stayed focused on remaining present with him and breathing through my own suffering.  In this way, I was able to remain in the moment with him.  The last three years of his life were the best years of our relationship and for that I am grateful. 

What made a difference in my  caregiving attitude was learning to bear witness to my loved one’s suffering. To me, bearing witness is learning to just BE. There is no hidden agenda. There is no holding resentment, anger, frustration. Instead,  it is a patient waiting, a sense of spaciousness that you offer your loved one by saying silently, I am here for you while you suffer.  

  

Below, is an article I came across on Ramdass.org.  It discusses what it means to bear witness to other’s suffering and how you can offer your presence as a caregiver.

Posted February 24, 2015

Caregiving from a Buddhist perspective is a recognition that this person’s suffering is also my suffering. When I see that, whether I’m the person in the bed or the person making the bed, I have to confront this precariousness. Buddhist practice can help us enormously in continuing to give our attention to what’s actually appearing, as opposed to being swept away by the drama of the process.

What are the basic attitudes that might be helpful in being with someone who is dying? One of those that comes to mind is to be completely ourselves. That means to bring our strength and vulnerability to the bedside. And to recognize that people who are dying continue to need very intimate and natural and honest relationships. We can’t serve from a distance, this is intimate work and we have to be part of the equation So it is absolutely essential that we bring our entire selves to the experience.

It’s important that we bring to the bedside the quality of empathy. This is maybe the greatest gift we can give another human being—our undivided attention. To listen without judgement or agendas. The great psychologist Carl Rogers once described empathy as “… looking with fresh and unfrightened eyes.” I think that’s a wonderful way of thinking about how to be with someone.

Also, simple human kindness. When people are sick, details matter. The manner in which we care for someone, the way in which we come forward to offer service, is incredibly important. How can we assist with the simple details? A cool rag on a perspiring brow, holding the hand of a frightened patient, doing the laundry, helping someone fill out the insurance forms. Simple everyday activities offered with loving attention that convey accepetance, build trust and enhance self-esteem. I would add “non-doing” to this list of helpful attitudes. To really to have the confidence in our human presence. In the final days, slow down, leave a lot of room for silence, reduce distractions. Don’t miss this moment waiting for some future event, even the moment of dying

Part of my task is to try to take Buddhist practice and make it useful and accessible to people who are not experienced with it; to use language that doesn’t create more barriers. There’s a lot of talk out there about conscious dying. But we don’t speak so much about conscious care giving. In dying, spiritual support is every bit as important as good pain control. But we rarely extend that kind of support in a meaningful way. And as a result, too many people are dying in distress and in fear.

So what is it to provide this support? I would say first and foremost, it’s about bearing witness. And that means not turning away when the going gets rough, staying present in the territory of mystery and unanswerable questions. Sometimes, depending on the a person’s tradition, it means calling a priest to give last rites, or getting a prayer shawl, or helping to write letters of reconciliation. Rarely is it a matter of conducting existential discussions. Or even introducing formal practices. It’s helping people to face directly what’s occurring, to work with the paradoxes that they’re confronted with.

Probably most important, is to become aware of our own bodies and minds. Let’s not underestimate this. It’s the most essential of all practices—one’s commitment to maintain awareness of one’s own mind, body and heart in the middle of this. When we are caring for someone who is sick, we lend them our body. We use the strength of our arms to move them from the bed to the commode, and we can also lend them the strength of our mind. We can help to create a calm and fearlessly receptive environment. If there is one person in the room who is calm—just one person—it eases the entire experience for everybody.

Frank Ostaseski is a Buddhist teacher, international lecturer and a leading voice in contemplative end-of-life care. He co-founded of the Zen Hospice Project, the first Buddhist hospice in America. In 2004, he created the Metta Institute to provide innovative educational programs and professional trainings that foster compassionate, mindfulness-based care.

Gratitude



Heron on Gabriola Island, BC



Cultivate the habit of being grateful for every good thing that comes to you, and to give thanks continuously. And because all things have contributed to your advancement, you should include all things in your gratitude.” 
― Ralph Waldo Emerson

Grateful?  What can I possibly have to feel grateful about?  My Mom has ovarian cancer and watching her go through chemo and suffer is horrible!  Her pain is my pain and my heart feels like it’s breaking! I wish things were different; I wish she was healthy, I wish this had never happened, I wish our lives were back to normal and I could wake up and this would all be a bad dream.  Grateful? Impossible.

These were my thoughts fifteen years ago when my Mom was diagnosed with Stage  4 Ovarian Cancer.  I loved my Mom and being on the cancer journey with her was incredibly difficult.  I would have done anything to ease her discomfort. I was upset and yes, feeling sorry for myself and for my family.  Thanks to a wise friend’s advice and initiative, I began going for counseling at the Tom Baker Cancer Center at the Calgary Foothills Hospital. 

I learned a lot during my counseling sessions with Dr. J. We discussed many things but the one theme that stayed with me was gratitude – to be grateful for the time I had left with Mom and to use that time to truly be with her and to tell her how I felt and what she meant to me. I listened to Dr. J’s advice and chose to make the difficult decision to end my full-time teaching contract as a beginner teacher and help care for Mom. I listened to my heart and it knew that time was finite.  I was grateful to have the opportunity to be with her in this trying situation as I was aware of others who were not as fortunate to have time with loved ones before they passed.

I remember Mom’s attitude during the last couple years of her life.  She was still filled with dignity and grace. I never saw her feel sorry for herself or act angrily or bitterly.  She made a point to mail hand written thank you cards to friends and family who came for a visit or brought her a special treat. Somewhere in her pain, she managed to find things to be grateful for.  What an amazing lady and role model! What and important life lesson.

Fast forward seven years and cancer again entered my life.  This time it was Bryan, my partner and he was diagnosed with Metastic Melanoma.  We did not ask for the prognosis but l learned three months after his diagnosis that it was Stage 4 and his treatment was palliative.  Grateful?  No, I was definitely not feeling grateful. My heart was just starting to heal from Mom’s passing. I was angry and being unable to do anything to control or make the situation better caused me to feel depressed.  Bryan saw the change and said to me, We have today.  That’s enough.  Be grateful for today. And he was grateful everyday to sit outside on the patio and watch the birds, to enjoy another home cooked meal, to watch another hockey game.  He did not allow worry or fear into his thoughts. He had another day to live, another day with me and that was enough. 

I often wondered if he was denying the severity of his diagnosis until I saw how acted the last two months of his life on the Palliative Care Unit in the Nanaimo, BC hospital. He continued to have a pleasant attitude and was always polite and grateful for the help from the nurses. He shared a kind word with other patients on the unit and spent time sitting ourside in the garden with patients and visitors talking, drinking coffee. To him, it was still another day, another gift. Just to be was the gift worth feeling grateful for.

I remembered what I learned from Mom and Bryan about gratitiude when I returned to Calgary two weeks after Bryan passed to look after my Dad who was admitted to a full time care facility.  Dad was diagnosed with Supra-Nuclear Palsy, which is a degenerative neurological disease similar to Parkinson’s Disease. During the subsequent three years, my Dad’s physical ability degenerated and I watched this once active man who loved to golf, curl, hike, sing, cross-country ski lose mobility to the extent that he was unable to walk, feed himself, or wash himself. Would I have been angry and frustrated? Damn sure!  But that’s not what Dad expressed. He accepted the situation as, that’s how it is.  There is no sense wasting energy getting upset. I have lots to be grateful for. I’m still here.  I’m better off than a lot of other people. 

I spent every Saturday with Dad over those last three years. I would bring him a Tim Horton’s coffee and we would share a muffin or donut. I would wash and shave him, as Bryan had taught me when I was his caregiver. We would sit outside if the weather was nice and if not we would roll around the care facility and visit his friends. At lunch, I would help feed him and he would always be thankful for the assistance. Before I left, I always told him how thankful I was that he and Mom had chosen to adopt me and give me a wonderful home;  I appreciated everything he had done for me. And I told him I loved him.

Being a caregiver during all those years was difficult.  Surprisingly, I wouldn’t change a thing. I think about those experiences and I wouldn’t be who I am now, couldn’t be who I have become without them.  Sure, I miss Mom, Dad and Bryan everyday. I wish they were here with me physically but I know that they still live on in my heart. For that, I am grateful.

Taking Notes

Medical appointments can be intimidating.  There is a plethora of information, medical jargon, and questions plus the need to understand prescriptions and treatments.  Adding to this is the need to organize future appointments with various members of the medical team. 

How can you record all this information when you are feeling stressed emotionally, physically and mentally?

My Dad and my partner gave me permission to attend their medical appointments and to record what the doctor said for future discussion and use.  If it is possible for a member of the caregiving circle to attend the medical appoinments then I highly suggest that one should go. 

There are various ways of taking notes now that the technology has become a part of most people’s lives (smart phones, tablets, etc).  The website http://www.theverge.com has these suggestions for note taking apps for your smart phone/tablet: Evernote, Simple note, Microsoft OneNote. There is also a free note taking app available installed on iphone and ipad products. 

If you type and text as quickly and efficiently as I (a bit of self-deprecating humour) then a voice recorder may be the way to go. As suggested by http://www.lifehacker.com: Audio Memos, Voice Memos, Drop Vox, QuickVoice Pro and Recorder.

Or…you could go “Old School” and take notes as I did.  I recordered all the information during medical appointments by hand. I treated myself to a leather covered journal and used a beautiful pen. This was a nice way to annotate and I am glad to still have all the information from my caregiving experiences with Mom, Dad and Bryan. If a large journal is too cumbersome, Moleskin makes pocket sized journals for such tasks.  Use different coloured pens to keep organized and highlighters for important ntoes.

One final note (ha), always be sure to ask for permission from the doctor or medical  team before you start recording. In most cases, they will be happy to assist. 

Taking notes in Florence, Italy

 

Caregiver Burnout

What are the symptoms of caregiver burnout? How do you know if you are nearing caregiver burnout?

Below are a list of caregiver burnout symptoms as described on the website http:\\www.helpguide .org :
– You have much less energy than you once had
– It seems like you catch every cold or flu that is going around
– You’re constantly exhausted, even after sleeping or taking a break
– You neglect your own needs, either because you are too busy or you don’t care anymore
– Your life revolves around caregiving, but it gives you little satisfaction
– You have trouble relaxing, even when help is available
– You’re increasingly impatient and irritable with the person you’re caring for
– You feel helpless and hopeless

There were times when I felt caregiver burnout during the thirteen years I was a caregiver for my family members. I wasn’t aware that my feelings of being overwhelmed and exhausted were symptoms of the transition from caregiver stress to caregiver burnout. It wasn’t until my caregiving duties ceased for each individual family member I was caring for that I was able to take the time for rest, relaxation and recovery.

What can you do if you notice that you are exhibiting symptoms of caregiver burnout? Looking at your Circle of Support (see the previous blog titled Circle of Support) for people who are available to help you with caregiving duties or are available for you to receive personal support.

The following are links with further information about caregiver burnout symptoms and suggestions about how to address the issue:
www.helpguide.org/articles/stress/preventing-burnout.htm
www.alz.org
www.webmd.com/women/caregiver-recognizing-burnout
www.aarp.org

Good luck and remember to take care of yourself!

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One way I recharge myself after caregiving…lovely!

Apps for Caregiving

Help is available in many forms for caregivers.  Besides finding support through one on one, be that counselling or a friendly shoulder to lean on,  there is support available in “cyber land”.  Technology can be used to find a support group consisting of people from anywhere around the world.  Check out online support groups to see what is availble. Also, there are many apps available to help with organizing daily caregiving duties and to promote self-care.

Below are a list of Apps that I consider useful for caregivers.  The Apps can be found  in the Apps store on iTunes and most are free.

Home care/nursing:

In Case of Emergency (ICE): Preparations for a Medical Emergency

Medical Home Care – log book for medications, patient information, treatment progress, etc.

Self-Care During Cancer

Care Training CFHED

Caregiving General:

ehospice

unfrazzle

CaregivingAppRecipient

CareGivingAppCaregiver

Medication:

Pill Monitor for iPad – medication reminders and logs

RXWiki

Journalling:

Moleskine Journal

Pages

Exercising:

Fitness Buddy

Daily Yoga

Meditation/Relaxation:

Complete Relaxation: Guideed Meditation

Meditation Timer

Stop, Breathe & Think

Ambiance

Meditation in everyday life

Nature Sounds

Pain Relief Hypnosis

"Reinvigorate", Shelly Lawton

“Reinvigorate”, Shelly Lawton

Getting Away From It All

I believe that an important component of self-care for caregivers is to physically take a break away from your daily surroundings to refresh yourself: a short drive in the country, a day trip to another city or town…

I am very fortunate to live in Calgary, Alberta and have access to the majestic Rocky Mountains an hour away. When I am feeling overwhelmed or exhausted, I can always count on a weekend in Kananaskis, Canmore or Banff to bring me back to myself. What a privilege! What a joy!

Enjoy the photos from my recent get-away to Banff, Alberta. Yes, it is that beautiful!

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Filling Your Cup

caring4lovedones

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During one of my counselling sessions, my counsellor brought up an interesting point: You cannot give to someone else if your cup is half-full. You must fill your cup to overflowing so that even if you give away half your energy, you still have enough in reserve to take care of yourself. The notion of needing to have your cup overflowing was intriguing. I had always operated from the belief that having just enough energy (half full) while caregiving was adequate. Often, I found myself “running on empty” until I rested and refilled myself enought to start the cycle again.

What my counselor was saying was that I needed to give even more to myself in order to give to another person. Half-full was not enough. Reflecting on her advice, I made a list of activities that restored my energy or emptied my energy. Here’s an example:

Filling:
writing
reading

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Filling Your Cup

IMG_2261-1.JPG

During one of my counselling sessions, my counsellor brought up an interesting point: You cannot give to someone else if your cup is half-full. You must fill your cup to overflowing so that even if you give away half your energy, you still have enough in reserve to take care of yourself. The notion of needing to have your cup overflowing was intriguing. I had always operated from the belief that having just enough energy (half full) while caregiving was adequate. Often, I found myself “running on empty” until I rested and refilled myself enought to start the cycle again.

What my counselor was saying was that I needed to give even more to myself in order to give to another person. Half-full was not enough. Reflecting on her advice, I made a list of activities that restored my energy or emptied my energy. Here’s an example:

Filling:
writing
reading
quiet
playing musical instruments
drawing/painting
library
movies
cooking/baking
hot tub/sauna
4 meals
20 min naps
8+ hours of sleep
exercise
tea
meditation
walking
taking photos
listening to podcasts, soft music, jazz
learning a new skill (photoshop, Italian)
dancing
time with partner and close friends
travel
hiking in Kananaskis/Banff
time on Gabriola Island

Emptying:
loud, busy places
feeling rushed
skipping meals
less than 8 hours sleep
watching tv more than 2 hours
processed and fast food
too much caffeine and sugar
too many errands in a day (6+)
long conversations
external deadlines
meeting others expectations
lots of social obligations with acquaintances

Awareness about what drains your energy is equally important to note as is what refreshes you. That way, you can be mindful where you spend your energy and if anything needs to be done to rebalance yourself. What would your list look like? Take 5-10 minutes to reflect on what fills and empties you.

Finding an energy balance is important while caregiving. You might not be aware of the energy you give to the person you are caring for. Driving to doctor and treatment appointments, doing the daily house work, completing the numerous nursing tasks can take its toll on your health and well being and may lead to caregiver burnout if you are not careful.

Good luck and keep your cup overflowing!