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..........

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.

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.

#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.

#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.

3 Event Choices - schedules, addresses, details

#1 Upper Westchester friends:
Come to my book signing on April 18th from 2 - 6 p.m. Refreshments and movie included.
Bean Runner Café 201 S Division St., Peekskill, NY 10566 (914) 737-1701
Movie and popcorn @ 2 p.m. Andrew Jenks, Room 335. (requesting $5 donation to film maker) A 19 year old moves into an assisted living home for the summer and finds wisdom, humor and love among his fellow residents.
3:30 - 6 p.m. Christine Sotmary's book signing. Living on the Verge of Insanity: loving lessons learned from my sweetie's early-onset Alzheimer's. Share in the celebration of my life, completing the old and launching the new!

#2 New York City friends:
Come to my book signing on April 25th from 2 - 5 p.m. Refreshments and movie included.
Dylan Prime Restaurant at 62 Laight Street (just south of Canal Street)
Movie and popcorn @ 2 p.m. Andrew Jenks, Room 335. (requesting $5 donation to film maker) A 19 year old moves into an assisted living home for the summer and finds wisdom, humor and love among his fellow residents.
3:30 - 5 p.m. Christine Sotmary's book signing. Living on the Verge of Insanity: loving lessons learned from my sweetie's early-onset Alzheimer's. Share in the celebration of my life, completing the old and launching the new!

#3 Can't make either:
Listen to my interview about my book and caregiving on blogtalk radio with Paul Morris.

#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......