The Great Unlearning Which is Alzheimer's

 I found this article about deep philosophical and spiritual questions related to Alzheimer's Disease to be very comforting. I see the importance in emotional processing and life review in various elderly people, not just Alzheimer's patients. Lots of examples and ideas in this: http://www.crosscurrents.org/webb.htm

Being Still, Letting Go

Painting © Copyright 2009 Sheryl Karas

When life is chaotic it can feel extremely difficult to find a calm center to relax into and let go. I think this painting I did recently epitomizes that. Too much happening to feel "meditative". But it is a mandala. Breathe in and focus on the very center.

Or close your eyes and begin again.

The mandala above is a challenging place to begin a focused meditation practice. I can't do the practice I suggested above with this piece myself. But that's why I chose it for this article. Living with someone with dementia is like that. The chaotic disrupting influence of the dementia patient's fractured thought process and the worry, frustration and seemingly endless series of problems creates a backdrop that screams for attention even when you find a few minutes of "peace" just for yourself.

Some things in a caregiving situation take a lot of time to work through. Throughout my book I offer lots of suggestions caregivers can do to make things go better. But what about those things that can't be improved? You know what I'm referring to: the endless repeating questions that you just answered 10 minutes ago, finding the roll of tin foil in the refrigerator along with the unwrapped meat that mom insisted on putting away, the obsessive paranoia, the accusations that someone broke in and stole the purse you know will someday show up someplace weird. The list gets longer all the time and no well-meaning guidebook or caregiving professional has an answer for how to deal with it all.

It's natural to obsess on a situation that is this upsetting. And if there IS something you're overlooking -- maybe Mom's medications need to be adjusted? -- it's wise to get a professional opinion.

But, I know, sometimes you've done everything you can think of to do and the craziness doesn't end. Today I had an insight into this. Just going away, closing the door and obsessing on how much you hate the situation you're in does NOT make it better. :-) Yeah, it was an insight. . .  or rather a reminder to be in the present moment. In this perfect moment in time there is no dementia patient in the room. In this perfect moment there is nothing going on that can't wait until someone (not necessarily me) returns.

By really being in the present, I can breathe and return to a feeling of peace myself.

Give Yourself to Love

"Give yourself to love
If love is what you're after.
Open up your hearts to
The tears and laughter.
Give yourself to love,
Give yourself to love."
--Kate Wolf

My clients have been teaching me some important life lessons. While I consider my job to be about helping people learn to set limits and boundaries so they can take care of themselves better, I've recently had a spate of caregivers tell me the importance of risking it all for a cause you believe in. When the universe sends me the same message over and over I sit up and take notice, so when three caregivers in a row told me about how important it was for them to have made family caregiving the center of their lives despite the toll it took I decided it was time to write about that.

I sometimes have clients who are literally killing themselves to keep loved ones at home. I beg and plead with them to get some rest, to take time off, to let more people help and they refuse. One person explained it to me like this: "I made a commitment to my husband to see him through this time in his life and, by God, I'm going to be there!" Another recounted the story of how her concerned children actually slipped her a sleeping pill without her knowledge to make her get some rest while they watched her husband. Something happened when she was asleep that she wasn't able to be there for and she has resented the interference ever since. She wanted to be there. It didn't matter that other people were there to take care of things for her -- this is what she wanted to do with this time of her life, period!

Many clients have told me how precious they consider the time they spent with their ailing loved ones to be. It's hard, almost unbelievably challenging, and yet something they would not have missed for the world. The studies that worry me about family caregiving show that elderly caregivers over the age of 65 taking care of someone with dementia have a 60% higher mortality rate than elderly people who are not caregiving. However, the latest studies show that family caregivers in general (all ages, all kinds of illnesses) score higher on tests of physical and emotional well-being after their caregiving days are over than those people who have not done family caregiving. The emotional satisfaction and self-esteem that come from having seen a loved one through a difficult time of crisis and transition appear to far outweigh the negatives (if you survive).

What this information has meant for me as a caregiving consultant is that I am far more reluctant to tell a client that she "can't" do what she is trying to do. I still want my clients to take breaks, get other people involved and make taking care of themselves their highest priority because I want them to survive their caregiving experience and actually succeed at doing the best job as caregivers that they possibly can. But I also have to respect that sometimes love demands a person to make sacrifices that seem over the top to those of us who are not in similar situations. Caregivers put in superhuman efforts to keep their loved ones at home, parents stay up round the clock with sick children, lovers leave promising careers, family and friends to be with their beloveds. I, myself, still grieve the loss of having left my native New England to be with my husband, now ex-husband, in Santa Cruz. I grieve my losses but I don't regret the decision because when loving someone means so much you do what needs to be done and, no matter how it ends up, the loving was not in vain.

This was an excerpt from my book The Spiritual Journey of Family Caregiving. Buy it directly from me, autographed, for $14.95 plus shipping.

Embrace the Present, Embrace Possibility

Worrying about the future is something I am way too much of an expert at. Aren’t we all these days? Life has been so full of turmoil with terrible news about war and terrorism and children being kidnapped and other horror stories on the nightly news, not to mention worries about budget cuts and the normal personal dramas of everyday life.

I got some advice on this the other day: Embrace uncertainty. (Personally, this advice sounds impossible to me but there’s a logic in it worth exploring.) Everything in life is uncertain. Security, as Helen Keller liked to say, is an illusion. We could be hit by a bus in freak accident tomorrow. We can plan our lives down to the nth degree and lose it all in an earthquake. We just don’t have that much control! And yet so many of us, myself included, spend hours every day trying to plan and control what happens next.

There’s a flower called Mimulus that likes to live in precarious places overhanging running water. Other flowers choose protected areas surrounded by grass and trees or prefer to be in wide open grassy fields but not Mimulus. It lives life on the edge and when it’s time to reproduce it just casts its seeds into the water below where they are carried down the stream and planted wherever they end up. Can you imagine what it would be like to trust life so much? To just let go and believe you’ll wind up where you need to be?

Anxiety comes from fear about the future. We want the future to be a certain way and then fear that it won’t be. We try to convince ourselves that we can make things work out the way we intend and spend hours trying to imagine and prepare for any possibility that would interfere with our idea of how things “have” to go. And yet underneath we KNOW we can’t control every variable so, because we get so invested in how we want things to be, we get anxious and afraid.

I think the best way to be prepared for the future is to understand that even the worst case scenario can open doors for the best. We have to embrace everything that happens in the present as an opportunity.

This blog entry was excerpted from The Spiritual Journey of Family Caregiving. Available now from Lulu.com.

Trust

Trust was the one element I saw people grapple with time again. “Mom couldn’t possibly be happy in a situation like that” people would say when it came time to make changes in a living situation. Or “I couldn’t possible allow such and such to happen!” they would exclaim, assuming the worst, not seeing the potential for good in every shift that had to be made. Caregivers guided by an inner sense that everything would be alright, that the best solution would come, that God or the Universe or their Higher Power would find a way, said different things to me. The situations and choices were identical but the emotional/spiritual beliefs underlying the questions allowed for solutions better than what they could conceive of on their own. Instead of saying “no” or “I can’t imagine it” or “I won’t consider anything but what we’re doing now” they would say “I’m ready to accept things as they are and I’m ready to embrace the changes that are coming our way. How can I do this in the most loving way possible?” “What could I do better?” And “how can I get help with that?”

Another excerpt from the Introduction of The Spiritual Journey of Family Caregiving. Buy the book at Healing Communication Press at Lulu.com. Thanks!