Caregiver Questions #2) Separate and together

Have you ever felt that you were losing yourself inside your Caregiving relationship? Why did this happen do you think? Are you able to maintain separate identities?
What do you learn about yourself by attending to your loved one's need to grow and have respect?
Are you able to adjust when things need to change?

I would like all of you Caregivers out there to pick 3 or 4 of the 33 topics that you can relate to and tell us a story about your Caregiving experience. I'm writing a second book and would love to include your wisdom, humor, joy and even your upset, so that other Caregivers can learn from us. You can either post it in comments below or email me at sotmary@gmail.com. I will also be looking to do more extensive interviews either over the phone or in person, so contact me if you are interested in sharing in that too.

Caregiver Questions #1) What is Caring?

I'll be sending out 33 topics, like this one, over the next few months with related questions. I would like all of you Caregivers out there to pick 3 or 4 topics that you can relate to and tell us a story about your Caregiving experience. I'm writing a second book and would love to include your wisdom, humor, joy and even your upset, so that other Caregivers can learn from us. You can either post it in comments below or email me at sotmary@gmail.com. I will also be looking to do more extensive interviews either over the phone or in person, so contact me if you are interested in sharing in that too.

1) What is Caring?
How do you handle issues of control or who has more power in your Caregiver role?
How do you nurture your loved one's growth? Do they seem to trust you? Who sets the agenda? How do you encourage them to care for themselves? How do you help them to get excited about life? What happens when things get routine?

No wonder they are confused! Sham acupuncture doesn't exist!

This NY Times article shows how hard it is to study an ancient healing modality with modern testing protocols. We all want to know why acupuncture works. Time to think "outside the box" when comes to doing these studies.

Big Ideas for Caregivers

In a perfect world there would be someone......let's say they are called Professional Caregiver Advocates........and all they do all day is create fun stuff for Caregivers to do. Finding places where Caregivers can get together to share support and ideas, finding little elves to help with shopping or laundry, being someone to listen, someone who understands, someone who can help in lots of little ways, a shoulder to lean on, a "big sister or brother", hugs when you need them, quiet when that's what is needed.
Well we are working on getting Professional Caregiver Advocates out to every community. It'll take some time but keep checking in for progress reports.
If you would like to be on our dream team email me. sotmary@gmail.com

Bones......is thicker better? Me thinks not.......

I knew about this and yet I didn't know the extent of things. A quick article on the problems with osteoporosis medications.

I tell you....those early 70's were the good ol' days!

I just spent a home bound weekend due to our ferocious Nor'easter. It gave me a chance to get into some deep closets and I found this gem of a book. On Caring by Milton Mayeroff It's a quick read and articulates ideas about Caring that have been banging around in my brain without the words to express them. Thank you Milton.

Pain hurts more than we think!

What a list!! Ouch!!
Remember Acupuncture can help break the pain cycle. See list below.*

from Handbook for Mortals : Controlling Pain : The effects of pain

Pain is more than "just" hurting. Pain decreases your physical, emotional, social, and spiritual well being in a variety of ways. It affects you physically, mentally, and emotionally. With pain, you may:

Be less able to function
Feel tired and lethargic
Lose your appetite or have nausea
Not be able to sleep, or have your sleep interrupted by pain
Experience less enjoyment and more anxiety
Become depressed, anxious, or unable to concentrate on anything except pain
Feel a loss of control
Have less interaction with friends
Be less able to enjoy sex or affection
Have a change in appearance
Feel that you are more of a burden on family or other caregivers
Suffer more

Adapted from "Management of Cancer Pain" by the Agency for Health Care Policy and Research

*Claims of Acupuncture for Chronic Pain

Acupuncture has been claimed as an effective treatment for certain chronic pain. The National Institutes of Health (NIH) Consensus Development Conference Statement stated in November 1997 that that there is "clear evidence for acupuncture's efficacy for treating postoperative and chemotherapy nausea and vomiting, the nausea of pregnancy, and postoperative dental pain." The NIH panel concludes that acupuncture may be an effective adjunctive therapy for many pain conditions. Acupuncture has been claimed effective for various pain conditions including migraines, back pain, tennis elbow menstrual cramps, fibromyalgia, and carpal tunnel syndrome.

There is never an end to wonderment......

A dear friend sent this over......for all the things we believe in, especially our love, creativity and open hearts begging for adventure...........

Eight-year-old Virginia O'Hanlon wrote a letter to the editor of New York's Sun, and the quick response was printed as an unsigned editorial Sept. 21, 1897. The work of veteran newsman Francis Pharcellus Church has since become history's most reprinted newspaper editorial, appearing in part or whole in dozens of languages in books, movies, and other editorials, and on posters and stamps.

"DEAR EDITOR: I am 8 years old.

"Some of my little friends say there is no Santa Claus.

"Papa says, 'If you see it in THE SUN it's so.'

"Please tell me the truth; is there a Santa Claus?

"VIRGINIA O'HANLON.

"115 WEST NINETY-FIFTH STREET."

VIRGINIA, your little friends are wrong. They have been affected by the skepticism of a skeptical age. They do not believe except [what] they see. They think that nothing can be which is not comprehensible by their little minds. All minds, Virginia, whether they be men's or children's, are little. In this great universe of ours man is a mere insect, an ant, in his intellect, as compared with the boundless world about him, as measured by the intelligence capable of grasping the whole of truth and knowledge.

Yes, VIRGINIA, there is a Santa Claus. He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy. Alas! how dreary would be the world if there were no Santa Claus. It would be as dreary as if there were no VIRGINIAS. There would be no childlike faith then, no poetry, no romance to make tolerable this existence. We should have no enjoyment, except in sense and sight. The eternal light with which childhood fills the world would be extinguished.

Not believe in Santa Claus! You might as well not believe in fairies! You might get your papa to hire men to watch in all the chimneys on Christmas Eve to catch Santa Claus, but even if they did not see Santa Claus coming down, what would that prove? Nobody sees Santa Claus, but that is no sign that there is no Santa Claus. The most real things in the world are those that neither children nor men can see. Did you ever see fairies dancing on the lawn? Of course not, but that's no proof that they are not there. Nobody can conceive or imagine all the wonders there are unseen and unseeable in the world.

You may tear apart the baby's rattle and see what makes the noise inside, but there is a veil covering the unseen world which not the strongest man, nor even the united strength of all the strongest men that ever lived, could tear apart. Only faith, fancy, poetry, love, romance, can push aside that curtain and view and picture the supernal beauty and glory beyond. Is it all real? Ah, VIRGINIA, in all this world there is nothing else real and abiding.

No Santa Claus! Thank God! he lives, and he lives forever. A thousand years from now, Virginia, nay, ten times ten thousand years from now, he will continue to make glad the heart of childhood.

Caring for Caregivers during the holidays

Here's a program that should be available in every hospital. I'm one of the volunteer coaches and I can tell you .......the satisfaction is remarkable when we can brighten the day for a family during such difficult times. There is so much love to be shared and it is lovely to be a witness. Instead of a dreary depressing place, the hospital comes alive with connection and relationship!

Uplift for the Holidays

Here's a great radio show and an article that may help keep the holidays a time for connecting and sharing with our loved ones. We don't need a job to hold hands and we don't need a credit card to call a friend. Focusing on our love is a great way to recover the spirit of the season.

Local Peekskill Program

Active Aging Week
HVHC is proud to announce our participation in
Active Aging Week
September 21-26, 2009
All programs are free and open to the public!
For more information, please call 914 734-3794.
http://hvhc.org/calActiveAging.asp



Monday, September 21
1:00 PM to 5 p.m.
The Alzheimer Project HBO Series
SCREENING SESSIONS
The Dempsey House
1992 Crompond Road, Cortlandt Manor

Topics Include: Having Alzheimer's, Caregiving and Grandchildren

Come for all or part of the afternoon, drop-ins welcome

Facilitated by Christine Sotmary M.S., L.Ac., CPC and author of

"Living on the Verge of Insanity: loving lessons

learned from my sweeties Early-onset Alzheimer's disease"

Early Onset Azheimer's Radio Show

Here's another great radio show, Positive Mind, from Armand DiMele. He is speaking with Pat Moffett about his book "Ice Cream in the Cupboard" concerning his wife's early-onset Alzheimer's. She was only 53 years old when she was diagnosed. Pat shares the lessons he learned and stories of his love and caring.

New Caregiving Radio Show

This show Positive Mind hosted by Armand DiMele aired last week. He interviews the authors of the "Tough and Tender Caregiver", Rhonda and David Travland, who wrote a book that offers advice on ways to avoid spousal caregiver burnout.
They gave some great advice about boundaries, taking time, making new relationship contracts, finding support. All great advice for Caregivers at any stage.

Active Aging Week

Join us at the Hudson Valley Hospital, just outside of Peekskill, NY for our Active Aging Week. I'll be facilitating the Alzheimer's Project on Monday 9/21 from 1 to 5 p.m. at the Dempsey House of HVHC. Join us for walks, stretching, education, and entertainment, all week long.....

Celebrating International World Alzheimer's Day 9/21/09

Sept. 21st is World Alzheimer's Day Read this blog post about World Alzheimer's Day to see what you can do that day.
Just so happens that we chose that as the day to screen 3 of the Alzheimer's Project DVD's at the media room of the Dempsey House at the Hudson Valley Hospital. We'll run them from 1 - 5 p.m. with discussions after each topic, Having Alzheimer's, Caring for Someone with Alzheimer's and Grandchildren experiencing Alzheimer's through a Grandparent.

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

The AMA gives out Caregiver info., do M.D.'s follow it?

Every doctor who is treating a patient with dementia and their caregiver needs to read the AMA information on what to expect and what to offer. Every caregiver needs to take the self-assessment to find out how close to burnout they are and what to do about it before it is too late.

To Walk in Another's Shoes...

Nightline aired this story the other night. It's only 5 minutes and a real eye opener. Can we really imagine what it is like to have Alzheimer's? This exercise goes a long way towards that end. Caregiver empathy is deeply sharing another's experience and this video shows how to walk in another's shoes so that empathy can grow.
It also gives a little glimpse into the lives of the caregivers and we need to all develope empathy for their situation as well and this video is a great first step.

Taking the time to care for the Caregiver

I just stumbled on this website called Partners in Care. What a fabulous idea! Check out the site to get some ideas for what you can do. Don't wait for this agency to come to your area. We can already offer our services to those who would surely appreciate a break, no matter how small. A friend used to walk with Alan while I ran ahead. That was the only 20 minutes I had to myself all week. Imagine......Read more in my memoir Living on the Verge of Insanity
If you aren't close by you can send a nice Hug a Caregiver gift.

Relationship Capital, it's already here......

See if you can take an hour out of your busy day in this world of money and making ends meet and hear about an entirely different way.......the social economy way based on relationships, trust and what is truly needed. The show is To the Best of our Knowledge: Future Perfect - Dreamers, Schemers and Visionaries. I listened to part 2. I see there is a part 1 and 3. That's what I'll be listening to today! Enjoy..........