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.



Anonymous said...

Jan, thank you for including a section on caregiving that ends with the recovery of the care recipient. That was my situation about eight years ago as my husband recovered much better than expected from a serious traumatic brain injury. For many months, I devoted myself to his care--and was diagnosed with secondary traumatic stress in the process--but when it came time for me to pull back, it was difficult. Despite the stress, I felt like I was doing important work in caring for Ken. And I'll admit, playing the role of the "noble caregiver" was something I wasn't quite ready to relinquish, either. It occupied most of my life at that time, and I wondered what I would do when it ended. Fortunately, Ken and I were able to recover together, and today we're doing fine.

I really appreciate your blog and all the good work you do to take care of caregivers and to help them care for themselves, too.

Jan Spilman, MEd, RCC Compassion Fatigue Specialist said...

Thanks, Barbara. It is quite an adjustment to give up the importance and stature of the caregiver role - and to figure out what to do with the void it leaves. You and Ken were really fortunate to be able and willing to heal and recover together - and, now, to be able to affect so many other TBI survivors and their caregivers so positively. Cheers, Jan