We have moved this blog

Unplug and Get Your Groove back will still be here for those of you who want to look over some great information and inspiring articles, including the 30 Loving Lessons for Caregivers located in 2009 archives.

New articles for Caregivers will be posted on www.caregiveraccess.blogspot.com and information for Caregivers, including listings of upcoming events will reside at www.caregiveraccess.org. Come and visit us over there and thanks for the long run.

Caregiver Questions 4) Knowing another

If you have any free time in the next day or two send me your stories as answers to any of these 4 questions already posted on this blog. I want to be productive at jury duty this week. Thanks for your stories and your love. I already have a pile of responses....email me at sotmary@gmail.com

How well do you know your loved one? Could you do this for someone you didn't know so well? What about nurses and aides, do you think it is better for them when they know more about their patients? How so?
How does knowing the strengths and weaknesses of your loved one allow you to do a better job? Describe how this might play out.
Give an example of how you know your loved one intuitively without words? How are they different from you?
How have you brought your strengths and weaknesses into your Caring? What are you good at? What has been hard for you?

Time sensitive request. Keep hope alive!

Please go to this website: Westchester Alliance
Your company or program will be Hudson Valley Hospital Foundation for
the survey. The rest of the information is your own.
Have a quick look around and then fill in the 2 minute survey that is
first on the list about the Westchester Alliance. The first 100 people
from a program that fill in the survey get a matching grant. Again our
program is collecting funding for Hudson Valley Hospital Foundation.
We want to keep our Social Worker, Paula,for the Kids Care 2 Program
we started so please HELP!

Let me know that you did the survey by sending me an email sotmary@gmail.com so I
know how many more people we need. And sorry if you get more than one
notice from me.
Lots of love,
Christine

Caregiver Questions #3) Devotion

Do you ever feel that you are holding yourself back or ambivalent about your role as a Caregiver?
Would you describe your personality as flexible or driven? Give an example.
How do you feel about not knowing where all this will take you? Are you committed to the long haul even though you don't know what your future holds?
Do you feel sometimes that the stress you are experiencing demonstrates to others that you are committed to this Caring?

For all my writer friends feel free to submit your stories via email or comments below. For all you talkers, I can interview you as soon as you see 3 or 4 areas that inspire your Caregiving stories. There are 33 areas to choose from for my new book.

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?

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

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.

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.

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.

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.

Check out my friend's blog on Understanding Dementia

Seniors and Their Families in Crisis

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

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

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."

#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.