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Archive for the ‘Caregiving’ Category

Authors Nader Robert Shabahangi and Bogna Szymkiewicz use the term “forgetfulness care” when discussing issues of care for people having the diagnosis of dementia or Alzheimer’s Disease.

In this section, they discuss the anticipatory grief that caregivers can go through:

Feelings of Loss

“If you feel close to a person who develops symptoms of forgetfulness, you are likely to experience feelings of grief and loss — not only after a person dies, but also as the condition progresses.

This is sometimes called anticipatory grief and includes:

  • Loss of a person you knew before.
  • Loss of a relationship you liked
  • Loss of a person’s former self.

Friends and family members may experience:

  • Loss of future plans (going on holidays next year, taking care of the garden together)
  • Loss of companionship and support.
  • Loss of a lifestyle they once had together (reading newspapers and sharing comments every morning, going to the opera once a month, eating lunch at the kitchen table).

Caregivers may experience:

  • Grief and a sense of loss when they see pain and suffering on a daily basis.
  • Sadness and anger as a person with forgetfulness symptoms slowly goes to another realm.

Grieving for a person with forgetfulness symptoms alternates:

  • Between despair and strong hope that everything will return to the way it was,
  • Between acceptance and non-acceptance.
For THE BEST information about forgetfulness diseases, hop over to Alzheimer’s Speaks Blog.  Lori is incredible and her blog is one of the most valuable resources out there!!!!
Will post a link when Lori and I sit down and talk about grief issues related to loss connected to losing someone you love who has lived with Alzheimer’s and dementia.  Stay Tuned!

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This is probably one of my favorite “go to books” when I hear of someone dying of something like cancer, ALS, or living with dementia and other forgetfulness disorders, etc.

Our hospice used to give this book to any family that was open to it.  Maggie Callahan has been a hospice nurse for a long time and has great insights into the journey toward dying and death.

Here is an excerpt:

“Caring for a dying person is hard work, especially at home.  There are medications to be given, often around the clock, personal care to be done, meals to prepare, and sometimes dressings or treatments to do.  And despite all of this, the tide of usual day-to-day responsibilities continues:  bills must be paid, children must be cared for, laundry must be done.  Families are frequently tired and it’s a massive job merely to focus on a particular day or a given moment.  The future holds grief and loss, so many families and friends avoid looking ahead.”

~~ Maggie Callahan and Patricia Kelly — Final Gifts:  Understanding the Special Awareness, Needs, and Communication of the Dying.

There is a fine line with being present at the bedside, planning for the future, and forgiving the past if necessary.  We are embodied beings, living in our temporal lives.  We cannot ignore any of these three time elements.

But we can learn to a balancing dance between them and often we find that it is in being fully present to right here and now, accepting our fatigue and frustration, not glamorizing the past, and not fretting about an hour from now, that we find some sort of peace.

No one can tell you not to live in the past or future. . . it doesn’t work to just say that… but if you can practice living now, with the awareness of the past and future that you may have more peace.

Like when we are on the cushion, we bring our full attention to the experience of the cushion.  But the past, future, sensations, thoughts, feelings, etc come up. We lightly touch them and let them go.

It is the same with caregiving and grieving. . . we attend to here, whatever here and now is.  We don’t push away what comes up from the past or the future but we don’t entertain those things either.

Don’t set out the Pepperidge Farms cookies and a pot of tea for these things that come up.  You want to foster equanimity toward them, not make best friends with them.

Make friends with what is right now and know that when things from the past or future come up, they will — that’s how your brain is designed.  Acknowledge them and let them drift away.

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Excerpt from Doug Smith, MDiv, Caregiving:  Hospice-Proven Techniques for Healing Body and Soul

“The following exercises can help caregivers relieve some of their own stress with a few laughs and reinvigorate themselves so that they can facilitate some humor for those in their care.

If caregivers are under stress, we cannot meet the urgent needs of the people in our care.  And we are hardly in the mood to bring humor to them.  This activity can divert us from our own stressful state:

Pull out the following list of activities whenever stress seems overpowering.  Complete each activity in the order listed as fast as you can.  If you reach the end of the list and still feel stressed, repeat the list in reverse order.

Raise your eyebrows twenty times.

Shout five words that begin with the letter “Z”.

Rub your tummy ten times counterclockwise and ten times clockwise.

Roar like a lion.  Bark like a dog.  Purr like a kitten.

Clap your hands ten times.

Throw something up in the air and catch it — twelve times.

Stick your tongue out five times.

Make five different silly faces.

Shout five words that begin with the letter “Q”.

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The next couple of posts are from Deeper into the Soul, a book on looking at Alzheimer’s & Dementia Care.  Take a look. . . .

“According to Arnold Mindell and many spiritual traditions, we can talk about three levels of reality, or realms of perception:

Consensus Reality:

This is our everyday reality:  the world we agree upon, where we notice similar things and give them names.  Consensus reality is considered the most “real” by most people. Here we agree on what exists and what does not; we share perceptions, even if our opinions and judgments differ.  For example, we look at a table and agree that it is a table.”

From:  Deeper Into the Soul:  Beyond Dementia & Alzheimer’s Toward Forgetfulness Care by Nader R. Shabahangi & Bogna Szmikiwicz

Note:  I will be away on retreat for the next week.  I wish you all well and I hope you enjoy the articles that I have left in my stead.

May sorrow show us the way to compassion

May I realize grace in the midst of suffering

May I be peaceful and let go of expectations.

May I receive the love and compassion of others.

With love and deep gratitude, Jennifer

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from A Caregiver’s Challenge:  Living, Loving, Letting Go by M. Schacht

You have the right to:

  • be comfortable with your physician.
  • a second opinion (or third).
  • interview a physician.
  • refuse a particular therapy.
  • refuse medication.
  • think things over and not rush into action.
  • your anxiety.
  • see your records.
  • copies of letters and x-rays.
  • know what side effects may come from sugary, medication, radiation, or chemotherapy
  • have a family member or other support person with you when a plan of action is being explored or explained.
  • make your own decision and not to succumb to pressure.
  • resist emotional blackmail.
  • explore alternative therapies (Herbs, acupuncture, etc.).
  • remain silent.
  • chatter.
  • seek a support group.
  • dignity.
  • grieve.
  • manage your own case!

Don’t think you have to be a patient with a life-limiting illness for this to apply to you.  Remember, if you aren’t your own advocate, who will be?  Who else has your best interest at heart, the way you do?

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Signs of Compassion Fatigue or Burnout

  • Perfectionism – focuses on what needs to be improved, rather than on what has been accomplished, feel like you never succeed at anything
  • Never-ending tasks — work that appears to lack both a beginning and an end, no closure, therefore, feel like nothing is completed
  • Multiple roles – feeling of being overwhelmed by playing numerous roles at work and in personal life
  • Substance abuse – marked increase in consumption of alcohol, drugs, cigarettes, and caffeine
  • Loss of self-esteem – decrease of self confidence
  • “Negative” Emotions – anger, anxiety, dissatisfaction, guilt, irritability

Related Resource:

The Five Things We Cannot Change by David Richo

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Exercise Promotes Stress Reduction

  • Exercise helps release built up tension from the body
  • Exercise can give you a venue for releasing happy tension as well
  • Exercise releases endorphins and other “happy hormones” in the body, promoting a feeling of well-being
  • Exercise helps promote overall health and wellbeing, which can also lessen your stress experiences
  • Some forms of exercise allow you to be social; other forms can allow meditative states, increase oxygen intake, raise self-esteem & improve quality of life
  • Yoga, Karate, Swimming, Walking, Biking, Non competitive sports like tennis, Hiking, Stretching

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Cover of "Awake at Work: 35 Practical Bud...

Cover via Amazon

In Michael Carroll’s book Awake at Work:  35 Practical Buddhist Principles for Discovering Clarity and Balance in the Midst of Work’s Chaos he has a chapter on Extending the Four Composures.

I like the idea of using these composures for our “work” by the bedside. . . when we are being caregivers.  When I apply them to what we do, they remind me of Frank Ostaseki’s Five Precepts for Compassionate Companioning.

Let’s take a look.

  • The Composure of Kindness — Michael write, “The kindness we extend to ourselves in meditation we can now extend to others at work.”  In this section, he talks about letting go… letting go of the story lines in our head, the beliefs that we have about a situation or a person.
    • Instead, he suggests that like when we are on the meditation cushion, come back to the present moment again and again, the thing that teaches us to have kindness and compassion for ourselves as we sit.
    • So can you imagine when you are sitting with your loved one, your patient, your client, waiting at the doctor’s office, or any of the things we do as caregivers, can you say to yourself, come back to my breath?  Drop the storyline?  Be present?  Can you take the extra bit of effort to breathe deeply and let your shoulders drop and your brain waves change there, in that moment?
  • The Composure of Respecting Difficulties —  Michael states, “By sitting still with ourselves, we learn to respect and attend to our “negativities” rather than resist and argue with them.”  In this section, he discusses the ability we foster. . . learning to respect what some might call our shadow side.
    • Can you imagine what that might be like?  To be able to be okay with your grumpiness, your short-sightedness, all of the things that we find to be awkward, stick, and uncomfortable about ourselves.
    • Instead of our usual ways of dealing with ourselves and our “faults”, we can learn what might be like to have the energy it takes to usually push these parts of us away?  Maybe that energy could be freed up for us to actually learn to have more patience, compassion, speak wisely, etc.
  • The Composure of Calm Alertness — In this section Michael reminds us, again, what we learn to do on the cushion is what we learn to bring out into the world with us.  While we’re on the cushion, we may notice that we are bored but we continue to come back to the present moment, attend to our breath.
    • Instead of following up on the story that we are bored and seeing where that takes us — to the kitchen, to the television, etc. we sit with it.  We place gentle attention and focus to our boredom and realize that we can have a level of calm alertness as we attend to our breath.
    • Can you imagine?  What would it be like in the fogginess of running around to doctor’s appointments, running errands, setting up meds, etc if we just sat and attended to that which is there, readily available, moment to moment.
      • Think about the alertness that comes from the practice of Yoga Nidra, attending passively to the consciousness in different parts of our body and the profound effect it has on our brains.  If you didn’t see my other blog and the entry, click here for more on this practice.
  • The Composure of Availability — In this section, Michael states, “On the cushion, we learn to be open and attentive.”  Of course, remember, Michael is talking about using these precepts at work and for this lesson, he discusses applying effort that is not seeking results but being present to what is.  Honestly, I don’t think it is any different in our lives at home either.
    • We are a being that is stuck on the past, moving toward the future, and has difficult being in the present moment.  But that’s why we practice, right?  We learn to let go of reliving the past again and again.  We learn to let go of putting effort into plans for the future.
    • Imagine what it might be like, to be present with the person you love.. not thinking about your adult child as the little kid who scraped their knee or thinking ahead to this Christmas or Passover when that person may or may not be here.  But being really present, making a snapshot, a memory right here and now, crystal clear to cherish.  We can’t create that moment if we can’t be present to it.

Michael says in the book, Awake At Work, “Buddhists regard the very act of sitting itself as the ultimate expression of human decency and poise. Having the composure to sit down and be still is considered utterly dignified and profoundly human.”

Can you imagine what that might be like?  What is it to be dignified and profoundly human?  What does it mean to be that present to ourselves?  to another person?

Can you imagine you, in this relationship with your loved one and it being an awakened relationship?  One that helps you come to and be awake for the only thing that really matters, your love in that very moment.

Peace, Jennifer

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Just received an email that the NY Zen Center for Contemplative Care and NY Insight are collaborating on an upcoming retreat this Friday and Saturday with Koshin Paley Ellison and Robert Chodo Cambell.

The topic:  The Buddha at the Bedside:  Exploring the Eight-Fold Path in Caregiving.

Their email stated that:  they will be looking that the enlightening and shadow qualities of the Eight-Fold Path:

  • Right View
  • Right Intention
  • Right Speech
  • Right Action
  • Right Livelihood
  • Right Effort
  • Right Concentration

They will also have a discussions on the Buddha’s teachings on how to end suffering in our lives by living the Eight-fold Path.

If you are lucky enough to live in the area, check it out and let us know about the workshop.  It is at NYInsight on 28 West 27th Street, 10th Floor. NY, NY 10001

Friday’s sessions are from 7-9pm and Saturday’s are from 10am – 5pm.

Registration is sliding scale and suggested donations are $55, $70, & $85 + Teacher Dana.

To register:  go to NY Insight Meditations Center’s Website:  www.nyimc.org and there is a link at the bottom of the page.

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Improving Communication

  • Stay focused
  • Listen Carefully
  • Try to see their point of view
  • Respond to criticism with empathy
  • Own what’s yours
  • Use “I’ messages — “I feel hurt when you don’t talk to me and sleep all day.”
    • “I need to be able to go see friends once in awhile if you don’t want friends to come here”.
  • Look for compromise
  • Take time out
  • Don’t give up – progress can be slow but rewarding
  • Ask for help if you need it

Resources for Communication:

Nonviolent Communication  – Book

Nonviolent Communication – Audiobook

The Five Keys to Mindful Communication: Using Deep Listening and Mindful Speech to Strengthen Relationships, Heal Conflicts, and Accomplish Your Goals – preorder at amazon.com

Related articles

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