Thursday, September 17, 2009

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"

Tuesday, September 15, 2009

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.

Monday, September 14, 2009

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.....

Wednesday, September 09, 2009

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.

Thursday, September 03, 2009

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

Wednesday, August 26, 2009

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.

Thursday, July 02, 2009

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.

Wednesday, July 01, 2009

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.

Saturday, June 20, 2009

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..........

Thursday, May 07, 2009

Thinking profound thoughts on a rainy day

I just found the small piece of paper where I had written this thought.
There will always be someone richer, better looking, more talented and smarter.
Instead of striving to be the best in those areas how about we work on being the most patient, kind, courageous, curious, satisfied and proud of ourselves. Let's include being the best listener too.
Then if there is someone better than us at these things we all benefit.

Friday, April 24, 2009

There's always good news...you just have to look

Improves brain function....what? Say that again! My favorite food group......chocolate.

Wednesday, April 22, 2009

It ain't Oprah but hey.....

I wanted to let everyone know about a bunch of stuff coming up related to my book.

1) I'll be on the TV show Senior Forum which airs on 5/13 @ 10 a.m. Cablevision. Channel 74.
It's the Yorktown schedule.

2) I'll be speaking for AARP at the Yorktown Senior Services
1 p.m. Wednesday 5/13.
Yorktown Nutrition Center
1974 Commerce Street
Yorktown, New York 10598

3) I'm speaking this Sunday 4/26 at 2:30 p.m. room B at the Tarrytown Marriot.


4) Also NYC book signing is this Saturday in Tribeca. Let me know if you can be there.

Here's the info.:
"Acclaimed author of “Living on the Verge of Insanity: Loving lessons Learned From My Sweetie's Early-onset Alzheimer's Disease - A Caregiver's Memoir” will be making a rare personal appearance and conducting a book-signing along with a special movie screening at Manhattan’s trendy Dylan Prime Restaurant at 62 Laight Street (just south of Canal Street) on April 25th from 2:00 pm to 5:00 pm. The screening will be Andrew Jenks, Room 335 a heartwarming documentary about a 19 year old college student who moves into an assisted living home for the summer.The movie will be followed by the book signing party.

This very special event will be taking place during the internationally famous Tribeca Film Festival, and will offer hor d’oeurves and a cash bar. Because of the anticipated attendance at this gathering, guests should register in advance either by email to sotmary@gmail.com, or by telephone message at 917-273-1308 as soon as possible. Although there is no admission fee, reservations are required. There will be a suggested donation of $5 for the movie screening."

Thursday, April 16, 2009

#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

Wednesday, April 15, 2009

#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.

Tuesday, April 14, 2009

#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.

Monday, April 13, 2009

#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.

Saturday, April 11, 2009

#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.

Wednesday, April 08, 2009

#25 Loving lessons from a Caregiver

I learned that our culture misses acknowledging many of us. It especially misses acknowledging former caregivers. There is much wisdom learned during this intimate experience and the world would benefit to hear some of the truths that are revealed during caregiving. We turn to recovering drug addicts, returning war veterans, sport's heros, even American Idol rejects and expect to find brilliant observations. Caregivers can rock this world with what they have seen and what they have been through. Life and love in all its depth and intimacy.... They just need to be asked.....