Tuesday, August 28, 2012

When Long Term Caregiving Ends IV: The Neutral Zone ...

It's like being in between trapezes. It's Linus 
when his blanket is in the dryer. 
There's nothing to hold on to.

Marilyn Ferguson

Hi everyone - I'll apologize in advance for another long post. There's just so much to say! (If I ever finish my first book, maybe this should be the second one ...).

Today, we're exploring the neutral zone, the middle stage in the transition between caregiving and post-caregiving. The neutral zone is typically a time of anxiety, worry, insecurity, uncertainty, frustration, low motivation, disorientation and self-doubt. Old issues and concerns, long patched over or compensated for, may rise to the surface. We overreact or react sluggishly, are easily confused and have trouble getting organized to complete necessary tasks.

What is going on? Well, basically, we're in limbo. The life we've known has gone and the new one hasn't yet arrived. Everything seems ambiguous. We have no sense of direction. And this in-between world does not resolve over night. As French novelist, Andre Gide, wrote:
One doesn't discover new lands without consenting to lose sight of the shore for a very long time.
The neutral zone is a difficult time. Former caregivers may struggle with the realities of loneliness, lack of structure in their days, financial depletion, poor health, new technologies, difficulty becoming employed, doubts about purpose and meaning, crises of faith, and continuing grief. However, if we can wait it out, the neutral zone can also be a time of creativity. 

Change and transition expert, Bill Bridges, puts it this way:
The neutral zone isn't just meaningless waiting and confusion - it is a time when a necessary reorientation and redefinition is taking place, and people need to understand that. It is the winter during which the spring's new growth is taking shape. ... The outlook, attitudes, values, self-images, ways of thinking that had been functional in the past have to  "die" before people are ready for life in the present.
So, we need the neutral zone, as uncomfortable as it is. One way to reduce the discomfort is to build some "temporary systems" for coping with the uncertainty and turmoil of this in-between stage:

1.  Coping with loneliness: 
Whether your loneliness is the unremitting, all consuming loneliness of widow(er)hood or the distance and alienation of a relationship altered by long term illness or injury, it is profoundly painful. And rather than reaching out, many former caregivers, too exhausted, too ashamed of their loneliness, or aware that no one will ever replace their lost loved one, withdraw farther and farther into isolation. And that isolation leads to more isolation. (Perversely, the more lonely you feel, the more you may stay alone.)
Even if you don't actually isolate physically, you may find yourself searching for connection in all the wrong places - telling complete strangers about your loved one's illness or death; becoming extremely busy with activities of all kinds; or losing yourself in TV, alcohol, the overuse of prescription drugs, sex, overeating or other compulsive behaviours. What is needed, instead, is the courage and strength to reach out, at your own pace, to people you know you can trust to be with you without trying to "fix" you.
These people may be kind friends who understand the neutral zone experience, caring acquaintances from a grief support or caregiving group, pastoral care or hospice volunteers, or helping professionals like clergy, counsellors or coaches. If your partner has recovered from his or her illness or injury, he or she may be the person with whom you most need to reconnect and share your true feelings and concerns.  Author and psychotherapist, Rachael Freed calls this "re-pairing the heartmate relationship" and writes about it in her book, Heartmates.
Once you have a core support system in place you can use it as a secure base from which to manage the uncertainties of the neutral zone.
2.  Managing stress:
The neutral zone, as you can see, brings its own stressors, different from but just as potent as those encountered during caregiving. Many of the same skills and practices that got you through the caregiving life will be useful again here - centering, regulating your breathing, avoiding worry and catastrophizing, embracing the present moment, appropriate contingency planning, walking and getting aerobic exercise, practicing good self care, journalling - particularly gratitude journalling, practicing taking in the good, and focusing on your daily spiritual practice. 
An excellent small book for practical reminders on how to manage stress is Edmund Bourne's, Coping With Anxiety. And Pema Chodren writes beautifully, from a Buddhist perspective, about becoming Comfortable With Uncertainty.
3.  Doing a life review:
This might also be a time to engage in a life review group, following the guidelines of James Birren's autobiography groups. If there is not a trained facilitator in your area, you could purchase a copy of Where to Go From Here: Discovering Your Own Life's Wisdom in Your Second Fifty and work through it with a coach or therapist. Or you could look for a helping professional willing to read the leaders material and facilitate a group. 
Although the book is aimed at those in the second half of life, I find the questions helpful for adults during any major transition. Provided you have recovered sufficiently, physically, and have the energy and focus to think reasonably clearly, the neutral zone can be a perfect time to take stock of life so far, and and to consider new directions for the future.    

These are just a few ways of structuring the neutral zone to make it more tolerable as you wait for the first whispers of new beginnings to appear. If other things have helped you during a neutral zone, please do take a moment to share them with us.


Thursday, August 23, 2012

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.


Friday, August 17, 2012

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

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.


Monday, August 13, 2012

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.

Tuesday, August 7, 2012

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.