When Long Term Caregiving Ends III: The Endings Phase

All changes, even the most longed for, have their melancholy;

for what we leave behind is part of ourselves;

we must die to one life before we can

enter another.

Anatole France

He that lacks time to mourn, lacks time to mend.

William Shakespeare

Welcome to post number three of the series on life after long term caregiving. 

The transition from the caregiving world to the post-caregiving world, like all transitions, takes place in three overlapping phases - the endings phase, the neutral zone phase and the beginnings phase. The endings phase is a time of grieving and letting go of both the pre-caregiving and the caregiving world. It involves recognizing the many losses that have taken place and making space for our inner responses to each of those losses. It involves letting go of the way things used to be.

The primary loss in the endings phase is usually the death of the care recipient - child, parent, grandparent, spouse, sibling, extended family member, friend. This is a profound and multifaceted loss that can take years to grieve fully if the attachment has been strong. For many family caregivers, there are also a number of significant secondary losses including:

• loss of the caregiver identity and associated status
• loss of the roles and daily routines of caregiving that provided structure for your days
• loss of the close "community" of healthcare professionals who provided social support then disappeared soon after the death
• loss of the sense of purpose and meaning that came with providing care
• loss of life opportunities - education, relationships, travel, time 
• loss of self confidence in areas of life apart from caregiving
• loss of a now-familiar "medicalized" environment
• loss of financial security - earnings, savings, pension contributions
• loss of employment opportunities - experience, training, promotions, higher level positions
• loss of health and wellness - physical, emotional, spiritual
• loss of the unusual closeness and intimacy of the caregiving relationship

Given sufficient social support and the opportunity to recover physically from the exhaustion of providing care, caregivers will begin to grieve these losses automatically in a style congruent with their personality type. The grieving will not likely finish within a year, as many believe - frankly, it will take as long as it takes.

Grief expert, Rabbi Vicki Hollander, reminds us that it is important to face into our grief rather than avoiding it:

It is important to remember you cannot outrun grief. You can delay it, freeze it, push it off. But it will remain with you until you face it and work with it. When you do not attend to it, you can have an increase in physical illness, and your emotions and relationships may be affected. It is far healthier to confront and learn to walk with it.

That said, it is also important that we don't try to tackle all our losses at once, risking becoming overwhelmed. If you are dealing with multiple traumatic losses, it can be a good idea to consult with a grief therapist who will help you to pace and regulate the emotions of your grieving.

Vicki has some further guidelines for those who grieve:

• Continue to rest when you can - grieving takes a lot of energy and can disrupt sleep.
• Simplify - continue to attend to rock bottom basics like healthy food, regular exercise, sufficient sleep, keeping afloat financially. This is self-care, not selfishness.
• Drive very carefully - grief can preoccupy you, making you more prone to accidents for the first year. 
• Get any answers  you need to questions about your loved one's illness and death.
• Have patience with yourself - be as kind to yourself as you would be towards a beloved friend. You may have much to learn and new routines to create. The stresses of these changes are great. Sometimes you may need to shut down for a bit in order to cope. This will change. Respect your need to stop.
• It is natural to feel a little crazy - transition can take us "out of rhythm" with our previous routines and ways of life. If you feel scared about your feelings, check them out to see if you are on target.
• Refrain from making significant changes  in your life for the first year, if possible. Times of transition and grief do not necessarily lend themselves to good decision-making.
• Have realistic expectations of the people who support you. Tell them what you need - they cannot read your mind. They may or may not be able to respond. Realize that you may need to find some new sources of support now that caregiving is done.
• Reduce stressors - keep your gas tank at least 1/4 full; give an extra house key to a trusted neighbour; always put your keys, wallet and phone in the same place when you get home; carry enough change for parking or bus fare; plan all holidays, anniversaries and birthdays well in advance; learn to ask for help when you need it; when accepting invitations, let people know that you want and intend to come but may not be able to manage it at the last minute. Check in advance to see if this will be okay.
• Complete unfinished business.  If you have unfinished thoughts, feelings or issues that were not expressed or worked through with your loved one and still demand attention, talk them through with trusted friends or see a grief counsellor.
• Try a facilitated grief support group or seminar.  There can be a tremendous sense of isolation when grieving. It can help to gather with others who share the experience of grief, who know what you're talking about, and who may have tips to share.
• Try using a journal  to express your thoughts and feelings about your new life without the physical presence of your loved one. It can become a companion for you and help to relieve some of the internal pressure of carrying so much inside. Journaling can also mark your growth, changes, insights and learnings. Later, as you look back, it can show you how far you have come. 

For some, caregiving ends with the recovery of the care recipient. For you, many of the same losses apply. In addition, you face the difficult inner task of relinquishing the reins and returning to the pre-caregiving role of spouse, child, parent, sibling, friend. This can be a tricky process with many opportunities for conflict, particularly if the care recipient does not have insight into remaining deficits or if the caregiver is too frightened and traumatized to let go.

Sometimes your fears are realistic and sometimes they go back to an earlier time when you felt as though you were in danger. Sometimes the fear is a combination of both past and present situations, causing an intensifying or layering effect. Whatever the case, dealing with the fear of letting go and grieving the associated losses can be helped by learning to reduce your fight, flight, freeze response; recognizing that you can never truly "go back" but must create a "new normal"; and accessing the help of a family therapist used to working with the family effects of serious illness or disability.

This has been a long post but hopefully one that leaves you with some workable ideas for moving through the endings phase of the caregiving to post-caregiving transition. Please join us next time as we explore the neutral zone - the middle stage of the transition process.






    

When Long Term Caregiving Ends II - The Early Days ...

Welcome to the second post in the series on life after long term caregiving:

For the first while after caregiving ends, (sometimes days, sometimes months, depending on the circumstances), many former caregivers slip into a state of numbness or shock. This is our psyche's way of protecting us from information that is too overwhelming to take in all at once. One former caregiver described it this way:

It was like I was wrapped up in a protective cocoon of cotton wool. The layers came off slowly, one at a time, until I could take it all in.

In these early days of the endings phase of the transition from caregiving to post-caregiving, there are still many tasks to accomplish - loved ones to contact, obituaries to write, funerals to plan, insurance to sort out, death certificates to send to all and sundry, medical equipment to return, medicines to discard safely. It is a very natural response to go on automatic pilot to get everything done.

Once these initial tasks are completed, though, it is not unusual for an accumulation of many years' exhaustion and strain, once held at bay, to come tumbling in. I remember spending weeks on end just sitting and looking out the window, completely depleted and bereft. I grieved some, but not yet with full intensity. I couldn't think in anything longer than a short phrase or sentence. While I probably looked quite depressed to those around me, I was distinctly aware of an intuitive need to do nothing, to be completely quiet and at rest while the bits of my body and soul knit themselves back together. It was a time of pre-grieving - a time of rebuilding a strong enough self to sustain me through the waves of grief to come.

During this time, I was grateful for the words of my grief counsellor, Rabbi Vicki Hollander, who had advised me that when the time for recovery came, I should do what any wise girl guide lost in the woods would do -  sit down, stay put, and conserve resources. This meant resting and resting and resting some more. It also meant focusing on only the absolute basics of life - eating nutritiously, getting sufficient sleep, exercising regularly (in the fresh air, if possible) and doing whatever was necessary to keep afloat financially.

This was a time of waiting and being patient. There was much that I wanted to do, much that had been on hold for a long time. But my energy reserves were seriously depleted and, after seven years of  full time caregiving, it was going take a period of time before I could completely refill the well. Until then, I had to relearn to listen to my body and to respect my need to stop - to give myself what Jan Richardson calls the Blessing of Rest:

Blessing of Rest

Curl this blessing
beneath your head
for a pillow.
Wrap it about yourself
for a blanket.
Lay it across your eyes
and for this moment
cease thinking about
what comes next, 
what you will do 
when you rise.

Let this blessing
gather itself to you
like the stillness
that descends
between your heartbeats,
the silence that comes
so briefly
but with a constancy 
on which
your life depends.

Settle yourself
into the quiet
this blessing brings,
the hand it lays
upon your brow,
the whispered word 
it breathes into
your ear
telling you
all shall be well
all shall be well
and you can rest
now.

Knowing about these early days of recovery is important even for those whose loved ones have survived - perhaps more so, in some ways. While society expects people to need at least a brief recovery period after a death, the same acknowledgement is not necessarily offered to those whose caregiving ends "happily". There may not be the same recognition of depleted resources or losses and adjustments in need of grieving for those whose care recipients are still alive. No matter what the eventual outcome of the illness or disability, long term caregiving costs the caregiver and each and every one of us has the right to recover according to our needs.

Please join us next time as we look at the latter part of the endings phase of our transition from the caregiving to the post-caregiving world.


 

When Long Term Caregiving Ends ...

Welcome, everyone, to the promised series of posts on life after long term caregiving.

Long term family caregiving generally ends in one of four ways - the death of the care recipient, the placement of the care recipient in a residential facility (though, for many, this move merely signals a change in caregiving venue), the care recipient's recovery, or the illness or death of the caregiver.

Whether the ending is welcome or tragic, the final phase of caregiving, the recovery and transition phase, can be a time of further challenge, adjustment, growth and meaning-making. It is a phase that frequently lasts longer than former caregivers expect and one that demands much but may give much in return, if allowed to unfold naturally, at its own pace.

A 2009 report on the experiences and needs of former family caregivers (by Mary McCarron et al for Care Alliance Ireland) identifies the significant emotional, social and financial impact of the transition from full time caregiving to being a former caregiver. As one study participant put it, you're in no world - your pre-caring world has gone, your caring world has gone, you're left with no world.

Liam O'Sullivan, Executive Director of Care Alliance Ireland, further describes the study results:

In the study, former caregivers describe how becoming a full-time caregiver meant losing the life they had with all its social contacts, work and other opportunities. Subsequently, when the person they cared for died or moved into a care home, they experienced further losses associated with their role and identity as a full-time caregiver. Losing both these worlds creates a profound sense of loss and emptiness.

At the point where their 'caring world' has just ended caregivers often feel caught 'between worlds'. They do not belong to any particular place and do not have any particular label or identity that applies to them. They experience a range of emotional reactions such as guilt, relief and anger. These are made worse often by the feeling that they have been 'dismissed' and 'devalued' by state services and this can become a barrier to 'moving on' and creating a new world for themselves. Other barriers include significant money problems and finding it hard to return to the workforce where previous skills for employment have been lost.

At its essence, O'Sullivan's description of post-caregiving echoes Bill Bridges writings on change and transition. Bridges says that whenever something changes concretely in our external world, (like the death or recovery of a loved one), we go through a corresponding inner process of transition in order to adjust to the external change. While the external change can happen in an instant, the internal process of transition can take much more time.

The process of transition occurs in three overlapping phases - endings, the neutral zone, and beginnings. The endings phase consists of grieving and letting go of that which was; the neutral zone phase is the anxious, fluid, confusing, unfocused, "Linus without his blanket", "place between worlds"; and the beginnings phase is the phase of renewed energy, interest, creativity and beginning attachment to a new life without the physical presence of what or whomever we had in our lives before the change took place.

The process of transition, therefore, is what takes place internally when we have recovered enough physically, for the grieving to begin. Over the next few weeks, we will explore various aspects of the transition from the caregiving to the post-caregiving world, including the healing of compassion fatigue and burnout, the grieving of the losses of long term caregiving, the nature of post-caring financial issues, some ways of countering loneliness, making meaning of caregiving experiences, and noticing and enhancing the quickenings of the beginnings phase. I hope you can join us.

Beating the Heat ...

Well, here I am, back from the hot sunshine and cool breezes of Kahshe Lake; from the many hours of reading, napping, and chatting  on the deck; from long swims out to the raft and back;  from concocting and eating delicious and healthy meals - plus the odd mini-cone of Chapman's amazing Cappuccino frozen yoghurt (!); from watching every episode of the second season of Downton Abbey on the small screen of a MacBook Pro; and, especially, from the loving companionship of my dear and generous friends.

I've returned to Vancouver freckled, relaxed, energized, and looking forward to all the busyness and creativity of the fall - and there's still a whole month of summer left! I have to say, though, that I was not quite prepared for the heat wave that was engulfing our lovely city when I stepped off the plane.

I'm profoundly grateful to be living in a cool basement suite but the heat does remind me of how difficult it used to be to help my husband breathe comfortably during the summer months. In a city where few homes are air conditioned and even hospitals struggle to keep their rooms cool, it can take some ingenuity to make those with chronic illnesses rest comfortably.

As a young student nurse working in the crowded red brick buildings of old St Paul's Hospital, I learned a few tricks for helping patients (and others) to beat the heat. They may sound hopelessly old-fashioned these days but the truth is that they work, whether one is ill or not!

• Cool the air with a fan and ice.  A small fan positioned to blow across a large bowl of ice cubes will cool a closed room as effectively as an air conditioner and, if someone is having difficulty breathing, directing the air flow over his or her face will give the feeling of sitting in a fresh breeze. (A needed experience that disappeared a number of years ago when some bright soul decided that it would be good to make hospitals air tight.) 

• Take a tepid bath.  Rinsing off your body with tepid water then allowing it to dry naturally will help to cool you down more readily than taking a hot shower followed by a towel drying.  Using a mister will do the same thing.

•  Keep blinds and windows closed during the day then open them when the sun goes down and the air cools. 

•  Turn off all heat sources. Turn off lights and your computer and use your microwave rather than the stove to cook. Better yet, eat cold food for the duration of the heat wave. 

•  Freeze your pillow.  Place a small pillow in a couple of plastic bags and put it in the freezer a few hours before you go to bed. Or try putting a wrapped ice pack at the back of your neck.

•  Keep hydrated.  Keeping in mind any fluid restrictions related to a health condition, or perhaps checking to see if that restriction should be loosened during the heat wave, be sure to drink a glass of water every hour or so. Adding mint, cucumber, orange, lime or lemon may make the water more palatable.  Ice chips, brushing your teeth, or rinsing your mouth frequently may help if fluid restrictions are severe. Try to avoid drinking alcohol or overly sweet drinks.  

• Find or make an old fashioned bed cradle or footboard to hold bedding away from the body. These can often be bought or rented from medical supply stores or may be available from a Red Cross Loan Cupboard. 

•  Soak a bandana or headband and wear it around your forehead. 

•  Try wearing light weight cotton clothes or nightclothes.

I hope some of these ideas will help to ease the "hot brassy days of summer" for you and your family.

• The next post will begin the promised series on life after long term caregiving so please do join us.
• The brochures for the fall Caring On Empty and Enneagram workshops (see below) are now available - just email me at caregiverwellness@shaw.ca and I'll be happy to send them to you.

    

Heads Up for Fall 2012 Workshops ...

Hello, dear readers! I know it's early for fall photos but I want to give you a heads up about two great workshops I'll be offering in greater Vancouver this fall. Do mark your calendars now and, when I return from vacation in early August, I will have registration forms available for everyone who would like to attend.

1.  Caring On Empty: Creative Tools for Compassion Fatigue Transformation & Resilience - A Workshop for Family Caregivers, Foster Parents & Home Share Providers

This is a one-day special version of Caring On Empty for those of you who provide care in your home for family members or others. (Also welcome are family caregivers whose care recipients are currently living in a facility.) 

Date:  Friday, October 19, 2012  9:00 - 3:30

Location:  Accent Inn - Burnaby (1 blk south of Lougheed and Boundary)

Cost:  $139  (Includes HST, beverage breaks, lunch, handouts & book draw)

2.  The Enneagram for Everyone: An Introduction for Beginners

This entertaining and informative 1 1/2 day workshop will introduce the Enneagram (see the description on the column to the left) to adults interested in an adventure of self-discovery, an adventure that can lead to greater self acceptance, understanding and acceptance of others, compassion for others' world views, and a direction for your personal growth.

The workshop will help you identify your personality type and begin a personal growth plan that will expand and enrich your self care.

(**Note:  This fall, in response to requests to include friends or family in the workshop, this workshop will be free-standing, without the prerequisite of a Caring On Empty workshop).

Date:  Friday November 16   7:00 - 9:00 pm  - and -

                     Saturday November 17   9:00 - 4:00

Location:  Accent Inn - Burnaby  (1 blk south of Lougheed and Boundary)

Cost: $ 179  (Includes HST, beverage breaks, lunch Saturday, handouts and text)

3.  For those waiting for the next Caring On Empty Workshop for Helping Professionals, I will be experimenting, this fall, with offering the workshop through Jack Hirose and Associates.

The workshop will be held at Kwantlen Polytechnic University, Richmond, BC, on Friday December 7th.   Registration is through Jack Hirose and Associates.

That's it for now. I hope you all find a way to enjoy a restful and refreshing break this summer. More workshop information on my return from Ontario in the first full week in August.

    

Life After Long Term Caregiving ...

Had my husband not died, this past Friday would have been our twenty-seventh wedding anniversary. It is almost eight years since his death and, although I had been feeling twinges of sadness for several days, I woke on Friday morning feeling mellow and happy.

The sun was shining and the air was cool and fresh and I rose early, gathering my journal and market bags, (and my ubiquitous green smoothie) and headed out to the Granville Island Public Market, for many years a favourite "day-off" place to visit.

I sat at "our" round wooden table with a large cup of tea and a toasted blueberry scrumpet (once shared, but now left half finished) and browsed through copies of Common Ground and the Georgia Straight. In my imagination, Derrick sat across from me, suntanned grey head bent over his book until something sparked his interest and he looked up, blue eyes shining with curiosity, to ask, "What do you think about this ...?". It's those moments that I miss the most. The times of shared ideas, interests and excitement.


After a while, I bought a second cup of tea and began to read my journal. It was good to look back and to see how far I'd come since the exhausted, bereft days after Derrick's death. Some of my anniversary entries were achingly sad and others, blazingly angry or scared, but Friday's note had more nuance, more complexity, more integration, a weaving of good and bad memories peppered with goodly amounts of forgiveness - both for him and for myself. I have grown and changed beyond measure through seven years of care-partnering and eight years of recovery and, while I would never wish the long term caregiving journey upon anyone, I am grateful for the "new me" and the things I have learned.

I believe we err in thinking that the caregiving journey ends with the death of our loved one. There is another important phase in the journey, a phase of recovery and the creation of a new life. This phase often takes longer than we might expect. (As I've written elsewhere, a wise acquaintance once said that it would be five years before I truly knew who I was without Derrick and she was correct, almost to the day.)

The length and the quality of this last phase of caregiving is different for each of us, of course, but there are commonalities in the experience - layers of profound grief, loneliness, the slow healing of compassion fatigue and burnout, rebuilding our physical wellness, the Rip Van Winkle syndrome, learning new roles and responsibilities, becoming financially secure, rebuilding a leisure life, learning to trust ourselves and our strengths in new areas of life. As we work through each step (often several times) we become not just well, but weller than well. (ie Not only returned to our pre-caregiving state but having developed new talents, new effectiveness, new strengths, new horizons.)

Because I believe this recovery phase of family caregiving is so important, I will begin a series of posts on life after long term caregiving in August, when I return from vacation. Watch this space for the first post sometime in mid-August.

Six New Articles of Interest ...

Hi Everyone! I've been perusing the internet this week and have come across some articles I think will be of interest to any one of us who cares for others, whether professionally or personally.

The first of these is a wonderfully well written report on young caregivers created by three UBC researchers for the Vanier Institute of the Family. Entitled, Young Carers in Canada: The Hidden Costs  and Benefits of Young Caregiving, this article explores topics including the incidence of young caregiving in Canada, the exceptional nature of the work, the age range of young carers, the ways in which early caregiving can disrupt "normal" development, factors that mediate the young carers' experience, the consequences of early caregiving, ways of supporting young carers and their families, and the need for public policy to respond to their plight.

The second article, Doctor and Patient: Can Doctors Learn Empathy?, was published in the New York Times blog. It cites new research on empathy training for resident physicians and finds that physicians like other helping professionals can, of course, learn empathic responsiveness.

A third piece, When It's the Nurse Who Needs Looking After, also from the New York Times blog, speaks of the extraordinary financial consequences of nurses' stress on the American health care system.

Fourth, is a thought-provoking Wall Street Journal interview, The Medication Generation, with Katherine Sharpe, author of Coming of Age on Zoloft,  about the long term effects of antidepressant use on adolescents.

A fifth article, from the New York Times, written by a health psychologist from SickKids in Toronto, focuses on the accumulated grief of physicians and it's impacts on patient care and on the physician's life and family.  When Doctors Grieve cites a recent study of oncologists' responses to patient loss in the Archives of Internal Medicine.

And, finally, an article on exercise prescriptions from healthzone.ca, Physicians Turn to Exercise Prescriptions to Prevent and Treat Chronic Conditions, caught my eye. It's emphasis on reducing symptoms and risk factors through exercise rather than medication, and its link to Toronto's Dr Mike Evans' new-to-me website, My Favourite Medicine, made it worth the read.

May these articles stimulate new thoughts and discussions as we move through the summer whether we're reading in a hammock by the lake, riding the Skytrain to work, or relaxing on the deck with a cup of iced tea. Cheers!