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 #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?

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.

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.

Check out my friend's blog on Understanding Dementia

Seniors and Their Families in Crisis

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.

#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.

#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.....

#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.

#22 Loving lessons from a Caregiver

I learned that I was running out of energy towards the end of caring for Alan. At the same time, as his body failed, more was being asked of me. That's where help is so important. The earlier the better.
Caregiving can go on for several days, weeks or in my case years. Exhaustion is a typical symptom for the caregiver and other health issues can spring from this exhaustion including accidents and weak immune responses. I ended up on crutches with stitches in my heel. Was I rushing? Was I paying attention? Was I tired and stressed?
My memoir Living on the Verge of Insanity describes how I slowly realized how much help I needed and how I found my support network to reduce my stress.