Give Caregivers Real Support

Enough already with the pamphlets and the hotlines. Time to ban anyone from saying, "Put on your own oxygen first". Most caregivers know that the plane crashed a long time ago, so cut the platitudes and "You must be a saint," and lets get caregivers some real support within the medical community.

Here is a link to today's column on Caregiver Support:

http://www.timesunion.com/opinion/article/Cameron-Let-s-give-caregivers-real-help-3445761.php

Who Will You Care for? Who Will Care for You?

As a follow-up to the post on March 23rd which paints a picture of all the caregiving that is ahead of all of us here is something that every one of us over 40 needs to be asking ourselves:

Who is going to be my caregiver? And whose caregiver am I going to be?

Factor in the possibility that the person you think will be your caregiver may need a caregiver first--So who is your second choice? And do they know that's your expectation? It's hard stuff to talk about with family and friends but this is the stuff that makes life really crazy when that call comes that says "Mom fell" or "You need surgery" or  "The test results show ...."

Later we'll talk about how to say No.

“Leaning into Sharp Points”- Wisdom for Caregivers

Here is a book review on a brand new book for caregivers and a link to Judi England's wonderful blog on Holistic Health. Take a look:


“Leaning into Sharp Points”- Wisdom for Caregivers

There Will Be a Lot of Old People and It Won't Be Pretty

It still makes me crazy when we talk about curing certain diseases and we don't think about the consequences. We are in the middle of a huge demographic shift at the same time we are in a healthcare revolution. It means there will be an unprecedented number of us living much longer.

Now on the surface that sounds great except that living longer doesn't really mean "living" longer. It means our bodies will survive and we'll have multiple chronic illnesses. Cancer is rapidly becoming one of those chronic illnesses. This means lots of disabilities, lots of ongoing treatments, surgeries, medications and their side effects. And that means every one of us will both have and be a caregiver. That is, in fact,  the emerging model of caregiving. There is no longer a sick spouse and a well spouse but alternating and simultaneous caregiving. That's tough.

Here are some numbers: Cancer deaths now peak at age 65 and kill only 20 percent of older Americans. Deaths from organ failure peak at age 75 and they kill another 25%. The number of Americans over 85 is expected to more than double by 2030. So the norm for aging is becoming a long, extended period of serious illness and chronic disability which will require ever-increasing assistance.

Yeah, I know, happy news? But we spend so much time pretending that aging and dying happen to other people so these facts can help us talk about aging and caregiving and communities and strategies.

Emu Oil and Your Love Life

Vaginal dryness is a factor for all women of a certain age. That's for certain. That age could be 30 if you are postpartum, or 58 if you are postmenopausal, or any age if you are post chemo. Nothing takes the fun out of sex more quickly than feeling like your most tender places are being scraped and torn.

You probably know about lubricants--water-based and silicone based. Try both to see what you like. You can buy them now in grocery stores and drug stores but if you are shy buy them online. If you are over 40 ask your friends. They are using them and you may not know because you are not talking about it.

Recently a friend told me about another sex life saver that is also a daily comfort. It's Emu Oil. Yes, Emu Oil. Uh huh, I did the same thing. I said,  "You mean that critter--the big bird that's like an ostrich?" Yes indeed. Oil from the Emu is magical. You can use it every day on your labia . (I was going to say "down there" But I swore I would not use euphemisms for sex or body parts, especially after so many folks in Cancer Land can't say penis, vagina or fellatio.)

Here is  what I learned that you need to know: It is not messy. You hear the word "oil" and you think, sticky, oily, staining. Nope. the consistency is more creamy or gel-like. It's not oily at all. You don't feel slimy; you just feel nice. No more sandpapery tissues  tearing or burning. And that is also good for your sex life. When we feel juicy and flexible we are more willing to get in the mood even when we are not in the mood.

And after a certain post-40 age sometimes you have to try just to find out that you are in the mood.

You can find Emu Oil on Amazon or lots of online pharmacies.

Bracketology

We love March Madness! One of the first things John and I did as friends was make to brackets and compete with each other. I love the flow chart of it and the guessing (for me it's guessing) and I love marking it up each day as my teams disappear. Most of my criteria are geographic (Pennsylvania and Maryland teams have an edge) and cool names. I always pick Xavier and Murray State just because of the names.

But it's also gotten me to wonder about creating a cancer  bracket. We already kind of have Cancer Madness and that perceptual flow chart thing goes on in the way we think. So what if we laid it all out and said, "Does Breast cancer beat Melanoma? and does Lymphoma trump Colon?" and which cancer is at the scary center: Ovarian? or sure fire, always a killer, Lung Cancer?

Las Vegas would join in for sure. And we're doing this in our heads, all the time, anyway.

Basho on Ancient Caregiving

On the road from Palm Beach….

On this trip I’ve been sampling Kindle’s new short pieces of writing and read Jane Hirschfield’s wonderful essay on “The Art of Haiku” and Japanese haiku master, Basho.

Basho—poet, samurai, and Zen master—wrote and taught in the 1680’s. So when, in her essay, Hirschfield writes about his emotions struggles caring for family I sat up and said, “Wow…even then caregiving was hard.”

In describing his later years when he was caring for an ill nephew and was frequently sought out by more students and fellow poets for help (haiku in its Basho perfected form is a kind of spiritual/psychological process)…. Basho wrote:

“Crushed by other people’s needs, I can find no calmness of mind.” This from a Zen master! After the nephew’s death Basho shut himself off for a year to recoup his peace of mind and his own health.

Caregiver stress in the 1690’s. That helped me to see—again—that it is a human phenomenon—not a personal weakness or a feature of modern culture.

Letting Go

There is so much letting go to practice. Cancer Land brings letting go of John, his health, his doctors, the outcomes--many little outcomes (tests, appointments, complaints)  and the big one--death. But there is so much more letting go I have to practice and so much of it is about other people.

I've read more than a dozen books about letting go and I can't count the hours and dollars of therapy. I don't discount any of that. It's helped and it's moved me forward and it's also made me more aware of how much more I need to let go. Melody Beatty is my favorite writer on this topic. She writes about addiction and recovery and codependency but "letting go" is the theme.

To be able to let go I have to be able to let go to something else or into something else. For me that something else is God, so I realize how much I need that relationship, and to have that relationship I need spiritual practices in my life.

I'm grateful that I have friends who I can talk to about God and faith and prayer and meditation. Last night I had one of those conversations with a good friend. We talked about our relationships, the ones with real live men and the ones we have with God. That's intimacy.

But this morning I come to letting go again. Maybe letting go of other people and what they think  is a spiritual practice. I can say the words. I can pray for help. But my behavior tells me where I really am.

Art and Death: Holding Our Own

I watched this extraordinary documentary with three good friends this week. I had seen this film in a class on Caring for the Grieving last year and I was so moved I had to have my own copy. I tracked it down and made a movie night. It’s not everybody’s idea of a chick flick—but really, in a sense this is the ultimate love story and a heartbreaker that makes you happy to cry a lot.

Holding Our Own is about fabric artist Deidre Scherer who creates  “paintings” from her real life sketches of people who are dying. Her work is extraordinarily beautiful and her craft amazing in the ways she creates super-realism in portraiture using layers of fabric. But the other beauty is her belief in and her philosophy of the role that death plays in life.

The second focus of this film is the Hallowell Chorus in Burlington Vermont. Hallowell is a group of amateur and professional singers who volunteer to sing at deathbeds and in hospitals with people who are near death. Again, no, it doesn’t sound like fun but in fact this is stunning.

Watching this extraordinary film with close friends led us to an intimate conversation about our beliefs in life after death, and what we might like for our funerals and our desires for the way we’d like to experience the end of our lives.

Holding Our Own was produced by Paul Newman and it’s available from Netflix or can be purchased on Amazon. It’s a fabulous intersection of creativity and death—which is to say generation-- or life and death.