Caregiver Magificence

I'll be speaking next week on this very topic.
"Mental Health Implications for Caregivers: Ageing, Serious Illness, &
Legal Considerations"
co-sponsored by the NGO Committee on Ageing

This program focuses on the importance of care giving and the stresses and
impact on mental health. Panelists will share specific challenges they
faced in caring for loved ones with serious illness including end of life
decisions. Mental health and legal issues will be presented. Strategies
will be discussed that may be useful for other care givers in making this
challenging time easier for themselves and, ultimately, those around them.
Thursday, September 10, 2009
2:30 PM - 4:30 PM

The Church Center
777 United Nations Plaza (44th Street between 1st & 2nd Avenue)
11th Floor - Hardin Room

Caregiver Magnificence
by Christine Sotmary M.S.

Family Caregivers are usually unremunerated, recruited by default, and asked to give up much of their previous life.

Tasks are but a small part of those sacrifices that these Caregivers are asked to organize. They accompany their loved ones to their medical appointments and wrestle with the health care bureaucracies such as insurance companies. They must also be sure that their loved ones follow prescribed medical treatment plans: they must run to the pharmacy to get prescriptions filled, make sure their loved ones take their meds, follow lifestyle prescriptions for eating and exercising, and so much more. When conditions worsen there is a variety of medical procedures that need to be learned, like wound dressing, giving injections, and then of course Caregivers may be called upon to see to their charge’s personal hygiene, which we all know can get quite involved.

If siblings, sons or daughters live some distance from their ailing loved one they have to find or hire someone else to do all this and worry about whether it is being done correctly or at all.

The progression of disease adds to the unpredictability and instability of these relationships. Personality clashes with a loved one may arise as a patient becomes more enfeebled, and behavioral changes can make even simple conversations difficult, frustrating and stressful.

Until someone is called on to be a Caregiver, there is no way to know how they will handle the situation. Often there are many other responsibilities the Caregiver is already juggling; this will have a telling impact on how well a “rookie” Caregiver takes to his or her new responsibilities.

Once the task is taken on, over time full time caregivers share a surprising similarity in their experience. These similarities have been referred to as the Caregiver's Syndrome. One notable shared experience is that of excess devotion. Such excessive commitment often causes the caregiver to put their own needs, plans for the future, emotions, and even health to the side, and the idea of taking even the smallest break is out of the question.

Excessive devotion often leaves the caregiver zapped of the energy and will to call on friends or family members and take a “time out”. Much-needed stress reducing activities like preparing favorite recipes, exercising, reading, etc., are also neglected. It’s an all-too familiar scenario where life takes a back seat to duty, where an outside life falls away and the world shrinks to but a few rooms in the home. The entire identity of the Family Caregiver seems to dissolve into caring for the loved one. They often ignore urgings to come out of their cocoon, feeling guilty and worried that they are shirking their duty. As familiar as these behavioral patterns are, it is just recently that we have begun to identify them as an aspect of the Caregiver’s Syndrome.

There are several possible ways to explain why it is so difficult for Family Caregivers to take time for themselves. Time away might mean time to think and be introspective, and that may be intimidating. When one's whole identity is wrapped up in caring for another, stepping away in order to reconnect with their sense of an individual self may be difficult, indeed. Fully recognizing what one has given up may be crushing and lead to great sadness and/or fear for the future, especially when the inevitability of loss is confronted. In fact, brain chemistry is changed by the experience of being needed so deeply and the Caregiver may suffer withdrawal symptoms when that intense giving is suspended, even for a few hours.

In time, the Family Caregiver who remains in this cocoon becomes starved for affection, for connection with others, for relief from their burdensome duties. As the stress wears on them, their ability as a Caregiver becomes compromised and they no longer feel positive about their life. Many vent their frustration by showing exasperation and becoming impatient, even abusive towards the one person closest to them, their loved one, the one who trusted them to love and protect them. For the Caregiver, there may seem to be no way out.

Having been a caregiver for my partner for 8 years as he journeyed along the path of Alzheimer's Disease, I can assure you that we need to give to the Caregivers, too. I did find many ways to take care of myself but I also experienced the pitfalls common to almost all Family Caregivers. I rejected many opportunities to take a break from my caregiving, not trusting surrogates to do the job with the same devotion that I had invested. I wasn’t even aware that I needed any help. In retrospect I can see clearly now that I too had been experiencing the Caregiver's Syndrome.

We desperately need to create an infrastructure of resources that Family Caregivers can access. Many other people faced with crises, such as veterans or cancer survivors, have coping and healing resources to avail themselves of, and now the time to heed the S.O.S. of Family Caregivers is at hand.

Imagine a world where Family Caregivers put themselves on the front line of the Healthcare Crisis! They have first hand knowledge of the failures of the Healthcare system, and have to go through their own crises when that same system creates obstacles in the way of getting or paying for services. Being a Caregiver makes navigating these rough waters a challenge but by using their experience and their awareness that a change must come, their voice gains legitimacy and the imperative to be heeded. With their activism, we would come to see a world where Family Caregivers are embraced as heroes by their communities.

Caregivers receiving acknowledgment and appreciation from neighbors and family members for doing this wonderful work would take the shape of gifts, prepared meals, time out for haircuts, help with finances or trips to the movies, transportation to doctors, shared responsibility, a meaningful antidote to the isolation that now exists for individual Caregivers. These volunteer community services can be coordinated by local hospitals, senior centers, nursing homes or faith-based institutions. There are even former Caregivers who are looking for ways to give back. One positive way would be to become a Caregiver Advocate. In time, Caregiver Advocates could become as common as Patient Advocates now are.

Right from the early days of their caregiving, a Family Caregiver would learn that they are not alone and that they need to share their duties with others, and that it isn't healthy for them to do this alone. There can be Caregiver centers created as places to come together, support each other and get quality information for making life easier. Meditation classes, singing workshops, or group walks in nature have all been proven to reduce stress and that would then give Caregivers the energy to continue to do their tasks in a loving, gentle manner.

As the awareness of the need to support Family Caregivers grows, so the likelihood grows that we, as individuals, institutions, organizations, and, ultimately our leaders, will step up to the plate and create an infrastructure of support that will greatly enhance the experience and the lives of both these magnificent Caregivers and their loved ones.

For more information:
Unplug and Get Your Groove Back blog
Coaching for Caregivers website
Acupuncture and Nutrition website
Caregiver Memoir

#30 Loving lessons from a Caregiver

I learned that being with someone in pain, without being able to "fix it", is one of the hardest things to do. Just listening, just witnessing, just being there is often enough and mostly not valued for the challenge it truly is.
The last lesson in this series....I want to thank all of you for your interest and support. Looking forward to all my fellow caregivers sharing their lessons with all of us. This world is a richer place for the love we have deeply shared.


"And anytime he needs you,
You'll go running there like mad.
You're his girl and he's your feller,
And all the rest is talk."

lyrics from What's the use of wonderin'
by Rogers and Hammerstein

#29 Loving lessons from a Caregiver

I learned I can keep Alan in my heart and never have to "get over" him. He has permeated my very cells and the experience of caring for him along with his love and energy make me much of who I am today.

#28 Loving lessons from a Caregiver

I learned in the trenches that dying is a complex process for the caregiver on many levels, physical, emotional, intellectual and spiritual. Values, beliefs and understanding concerning the dying process are best discovered way before they are needed.
Stephen Levine and his wife Ondrea were my guides.

#27 Loving lessons from a Caregiver

I learned that I am not afraid of dying but very afraid of not living.
The editor for my memoir Living on the Verge of Insanity had several questions to clarify as she was reading my book for the first time. One of them was "I sense that you seem to have a fear of dying and use the word urgency a lot in your descriptions. Is this what you are really feeling having taken care of Alan for 8 years. Is this a natural thing to feel as a result of watching his ongoing progression with Alzheimer's disease?"
I really had to pause and think. I have never been afraid of dying. I have never much been interested in living longer for its own sake.
Rather, I have been concerned with the quality of my life, finding meaning and purpose in my life and building loving relationships with those all around me. It's more a daily focus that will end when it does. Being able to live deeply, richly and intensely seems to be what the urgency that she sensed comes from.

#26 Loving lessons from a Caregiver

I learned that our memories are dynamic, personal and connected. Stuff is lifeless, static and only infused with what we need it to represent.
In Living on the Verge of Insanity, my memoir, I discuss the year that Alan was in a nursing home. What to do with all his things? How to keep him in my heart? How to reclaim my life? Taking peeks at the future.....
That year especially was a rich time of discovery, change and growth mingled with tears and loss.

#24 Loving lessons from a Caregiver

I learned that some issues of caregiving are specific to people with dementia and some issues transcend all caregiving.
In my memoir Living on the Verge of Insanity I describe 24 hour vigilance, doctor's visits, doing extra jobs around the house, financial issues and lots of experiences that all caregivers have. Then there are the many changes in perspective and new ways of communicating that are specific to a loved one with Alzheimer's disease or one of the other 120 types of dementia.

#23 Loving lessons from a Caregiver

I learned that living outside popular culture was the only way to experience the true depth of the lessons that were being offered to me. Any life can be lived superficially or intensely but caregiving narrows the choices. It is very intense.

#21 Loving lessons from a Caregiver

I learned that complete strangers can have more patience because this isn't their relative or loved one and they haven't had months or years of coping with troubling behaviors. Caregivers are often at their wits end.
In Living on the Verge of Insanity, my recently released memoir, I describe the day care centers and nursing home staff and how they knew how to talk to Alan and keep him engaged all day until my return. I was amazed at their kindness and followed their lead in many situations. Seeing him through their eyes as a sweet, loving man helped me continue on with my efforts in a loving, open hearted way.

#20 Loving lessons from a Caregiver

I learned that letting go of the role of caregiver was more difficult than taking it on. Even new habits are hard to break.
There often isn't so much as a hint of how life will be "after", so no wonder the familiar feels like a safer choice. However, there comes that time...........
I explore my journey through the withdrawal process from my Caregiving for Alan in my memoir Living on the Verge of Insanity. Interesting times these......

#19 Loving lessons from a Caregiver

I learned that caregivers are asked to perform many roles, social worker, social director, home health aide, protector, translator, partner in love. Based on our individual unique strengths some tasks come easier than others.

#17 Loving lessons from a Caregiver

I learned that caregiving is a powerful platform to examine long held beliefs and a perfect motivator to find beliefs that hold up even in difficult times.
And because this appears to be true, there are many lessons we can learn from our caregivers. They might not even realize the gems that they are holding in their hearts.
We all expect to learn lessons from mountain climbers, soldiers returning from areas of conflict, sports' heroes, folks on their death beds even the Olsen twins!
I betcha' when we start listening to our caregivers there will be much to explore.

#16 Loving lessons from a Caregiver

I learned why the airlines recommend that you put your oxygen mask on before you put your child's mask on. Self care is of paramount importance to be able to give generously over the long haul that is usually required. Caregiver burnout doesn't help anyone.
I describe the fact that I was lucky as an athlete to realize this early in caring for Alan. I needed sleep, exercise, music, nature and good nutrition.
What surprised me, as I describe in my memoir Living on the Verge of Insanity, was that my self care fell off completely when he finally was placed in a nursing home. I have now read studies that show that I was not alone and that often the emotions of depression and sadness along with the frustrations of watching an institution care for your loved one surface once they go to a home.

#6 Loving Lessons from a Caregiver

I learned that living in the present is even more important when big changes are happening. It allows for moments of joy and connection that would be skipped over in a haze of worry about the future. Bike rides, quiet walks in the woods, a hand squeeze, a smile, all would have had a dark cloud over them if the future had been intruding.
In my memoir Living on the Verge of Insanity I describe how often it was Alan who would bring me back to the present by pointing out a turtle on a rock or a baby swan at the shore of a swamp. After a time I learned to have this awareness for myself and we were able to share many years of joy and love together by staying in the moment.

#4 Loving Lessons from a Caregiver

I learned that leading a rich life through my music, dance and sports better prepared me with the emotional resources and skills I would need for this long journey.
Each activity made me more confident in the choices I had made in my life and confident of who I am. I had said to a friend years before that our belief in ourselves and who we deeply are needs to be shaped long before tragedy strikes. Some folks have their Gods to believe in and others have to find or construct their beliefs.

# 3 Loving Lessons from a caregiver

I learned that there are no limits to the call for love and intimacy. There is always another challenge, another level, another adventure. We may have limits for how far we are willing to travel into love but no limit for the level asked of us.
In my memoir, Living on the Verge of Insanity I describe how I finally had to hand over the main tasks when Alan needed a health aide. A sample chapter is available on the website.
In our caregiving there will always be something more that is asked and we get to say yes or no.

#2 Loving Lessons from a caregiver

During my eight years of caregiving I learned deeply how life is here to be lived, beyond memories, beyond reason, beyond hopes, beyond change, beyond judgments and beyond loss.
Engagement is the most important thing to me now, like being involved with my Salsa dancing, Zumba, jazz, triathlons, kickboxing, Rotary and growing my businesses. It's not about judging how good I am at any of them but rather how deeply committed I am to experiencing my chosen interests.
In Living on the Verge of Insanity I discuss how I was able to live this way and care for Alan even if it meant arranging to bring him to everything I was engaged in.

#1 Loving Lessons from a caregiver

I was able to narrow down to 30 the loving lessons that I discuss in my memoir "Living on the Verge of Insanity". My dear readers will get to learn what these lessons are in installments over the next couple of months.
Please let caregivers know that I am doing this so they can borrow my lessons to fortify themselves. Hopefully they'll better be able to keep their hearts open while avoiding the almost inevitable burnout we all feel.

Lesson One
1) I learned to draw on all my talents and skills in other areas of my life and apply them to my caregiving.
In the book I describe how I used my Life Coaching skills to find different perspectives on what was happening and my Montessori teaching skills to invent appropriate activities for Alan's skill levels.
a) From my Life Coaching I used metaphor: Like the times when he would call to me over and over to stay in touch. I used the metaphor of birds calling to each other tweeting, "I'm here, you're there". It made the repetition bearable for me since I am a bird person and have my African Grey Charlie on my lap as I type this.
b) The advice out there is to keep activities manageable to avoid stress for someone with Alzheimer's. I describe how Alan's laundry skills changed over time from doing the whole load to years later being limited to carrying things upstairs for me to fold. I would feel content in knowing I was able to use my skills as a Montessori teacher to help to keep him busy, happy and proud of his accomplishments with his dignity intact.
Stay tuned for lesson #2 where I talk about engaging deeply in my life while caregiving for Alan as a way to flourish and learn from my experiences.

Radio Lab and the How We Make Choices Show

The explorers are back! This time Radio Lab with Jad Abrumad and Robert Krulwich travel deep inside our brains to discover how we make the decisions and choices in our lives. They look at things such as: Why do some people seem better at making decisions than others? And: Should you listen to your head or your heart?
They leave you with a feeling that our subconscious and our emotions rule and all our claims to the contrary don't hold up to the bright light of examination. Enjoy the show.