“Life at the end, caring in the face of loss” – Notes from video

Last year I came across information about a short documentary film called “Life @ the end, caring in the face of loss.”  You might be able to find the 28-minute video online but local support group member Denise recommends not taking the time to watch it.  She says that there’s not much new information in the video.

Instead, she shares the “good reminders” the film raises, including:

* 40% of caregivers die before care recipients
* there are a diversity of approaches to caregiving
* how difficult the transition back to a normal life can be

Here’s what Denise says about the film….



Denise’s notes on

Life @ the end, caring in the face of loss
documentary film by Jennifer Molina & Farah Dosani, 2011
Distributed by Health News from Florida Public Media
Running Time: 28 minutes

“Love knows not its own depth until the hour of separation.” Khalil Gibran

That’s a quote from a touching video Robin asked me to review. It really reiterates what we already know about caregiving, because we are caregivers, and this is just interviews with caregivers. There’s no new information here. I wouldn’t recommend taking the time to watch it, but there are a few good reminders.

Nearly 1/4 of the population in the U.S. is engaged in family caregiving. As the title of the film denotes, it is because of love – even in the midst of mourning. But sometimes the motivation for uber-caring is to avoid any guilt after the person’s passing. You must feel you did everything you could, right? Be careful. Remember that the physical, emotional and financial stress of caregiving causes 40% to die before the person they’re caring for. If you don’t look after yourself, you may not survive them.

We commonly think of spousal caregiving or parent/child situations, but the face of caregiving is diverse. This video shares a same sex couple dealing with HIPAA rules, a family in which the ill father and his wife must care for two small children and himself simultaneously, and the impact on extended family who step in to support a primary caregiver.

Worth thinking about is that the diversity of people engaged in caregiving means there is also diversity of approaches to it, and ways of coping with the illness itself. The diagnosis, and finding how to live with it, clarifies and forever changes who each of you are. You may find yourself intensely worried about your partner and what the future holds, while they take their own therapies and symptoms in stride. You may become annoyed that a respite volunteer doesn’t do things the way you do, when you should be enjoying the respite, itself. You may need some support to handle your differences.

Finally, there will be an adjustment to life after caregiving. If its been all-consuming for you, it will leave an enormous vacuum when its over. One of the film’s subjects found that sharing with friends and family, during their journey through illness, all she had learned while caregiving, gave value to the loss of her partner. It perpetuated her identity as a caregiver but offered social interaction, support and transition back to a ‘normal’ life.