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.


Anonymous said...

Hi, Jan. Thanks for this valuable information. I haven't been a caregiver for a long time, but as my husband recovered after his brain injury, it took me a while to adjust to going back to being just a wife. I was very happy that I could do that, yet was sad for a while that my new role--which was exhausting, sometimes terrifying, all-consuming, and very rewarding--was over.

I was happy to also see the information on transitions from Bill Bridges. I'm currently taking a class on writing through transitions, and we're using his model.


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

Hi Barbara, Yes, I love Bill's work. It's so easy to understand and so applicable to any transition. I used it for years, helping organizations to deal with imposed change and transition and have been happy to apply it both to the unending changes of caregiving and to the transition back to the post-caregiving world. I'd love to hear more about your class ... Take care, Jan