Reflections

Martha Fay Africa and Stewart LevineSorry to be absent for so long. My beloved wife Marty died on January 21. She was an extraordinary woman. Just Google Martha Fay Africa if you want to know why.  I miss her and life relentlessly goes on.

I can’t believe it’s been almost ten months since my last post. Given the incredible array of media I’m sure few noticed my absence. I just posted my first tweet saying that sometimes life just forces you down and you have no choice. You can’t continue to do what you have been doing. Between caregiving, hospice, the dying process, memorials, estate stuff, grieving and rearranging furniture there was little time or inclination to write. I was able to do public delivery of programs which was mostly a respite and facilitation light (no heavy conflict!)

You have no choice but to respect your own process, and everyone is different. Mostly for me it was staying mindful of what I could and could not do.  As long as I was respectful things worked OK. It certainly is a process that you must surrender to. It is beyond your control.

Some observations:

Caregiving is hard work for someone you love…you don’t realize that until later, much later. Listening to what they want and facilitating is your job. Take it seriously is my advice. To be a good caregiver you have to take care of yourself. The gym, pool, hot tub and steam room did it for me most of the time.

Hospice care workers are dedicated folks who do a superlative job of making people comfortable.  The palliative care hospice provides is excellent.  Stay aware of the very important distinction between Palliative Sedation and A Dignified Death of the patients choosing. I won’t call it assisted suicide, that does not seem apt given our experience. It is not suicide. It is help with inevitable impending death from an irreversible medical condition. Suicide is an escape from life, a dignified death is just what it is.

Palliative sedation puts you out consciously (so they say) but then the body has its own process. For us it was four difficult days. Had we known what it would be like we might have gone elsewhere where it can be was quick and simple. It was made even more difficult by having to navigate the legal line while administering meds and caring for a dying spouse you are trying to help cross the chasm to the other side. All this while you have good nurse/bad nurse overseeing the process as you  play out a charade because of existing law. Medical science does wonders to take care of people. It seems an abandonment to not help them fully finish the process if that’s what someone wants.

Spend time with your loved one…your life will be there on the other side. Do as much of the bucket list as you can.

Two days after Marty died SB 238 was introduced in CA modeled after the Oregon law that has been very effective with no reported abuses over the years since it became law. The CA Medical Association just withdrew its opposition and it will hopefully become law. If you live in CA please contact your state representatives and urge them to vote yes.

Support groups and personal counseling can be very helpful. I have been part of a husbands group at UCSF where Marty was treated.  Twice a month men in various stages of the process come together to share their experiences. The proof of how valuable it is comes from the men who keep coming back years after their wives have died. It’s also a great service for caregivers to hear “veterans” talk about their own experience.

I was offered twelve individual grief counseling sessions by Marty’s hospice provider. She was an MFCC intern but it was valuable as a container to speak into.

I will also be following up with their spouses group that begins in September.

Looking back I see some stages. From initial shock when you steel yourself from the reality to deep grief and sadness that’s with you all the time to some letting go and accepting an evolving new normal.

For me finding a balance between essential grieving and slipping into depression has been a guideline. Having experienced some depression in my life I know the antidotes are exercise and staying engaged with friends and life.  Depression is a general malaise without specific cause while grieving over losing someone is a natural and universal. It’s quite natural and OK for you to be in mourning over your loss until you gradually resume the kinds of activities that brought you joy.

Keep talking…to your loved one as if they were there, to your friends and family and to yourself. If you can stay self-aware and mindful the grief can be a great opportunity for healing and learning. It certainly is not what you asked for but given its presence you might as well find some value.

Here’s a poem that seems apt…

LIVING

What is the essence of life that’s human?
What are the gifts of each man and woman?
As we enact our privileged existence
What’s the uniqueness passing between us?


The lives we lead have such potential
If only we cherished were more reverential
The biological machine we inhabit is a gift
The extraordinary tool provides such a lift


Our ability to think to feel and choose
Reflect on experience sense a win or a lose
Attraction repulsion taste touch smell and feel
Experience our senses intuition capacity to heal


Letting ourselves be open sharing the pain of others
Tending wounded sisters and injured brothers
Honor remorse learning changing what we do
Sacrifice self for lessons others can pursue


Project our feelings draw to our fold
Exhibit peace and quiet when we start growing old
Recognize what’s missing in our cultural mores
Committing ourselves honoring a cause


The richness of time here not to be denied
Please do not engage too much foolish pride
Take joy from the experience savor all the flavors
When making choices minimize your waivers


Are you having a full rich life experience? Are there things you would like to partake of while in your human form? What would you regret missing if the opportunity was gone?