#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......

#19 Loving lessons from a Caregiver

I learned that caregivers are asked to perform many roles, social worker, social director, home health aide, protector, translator, partner in love. Based on our individual unique strengths some tasks come easier than others.

#18 Loving lessons from a Caregiver

I learned that not knowing things is a scary but often a more truthful place. It requires lots of practice to stay there. Not knowing the future, not knowing what caused the disease, not even having a diagnosis can drive a caregiver insane. Just staying with the unknown is sometimes the way to handle the mysteries that are unfolding.
A reminder to the friends of caregivers........assuming that we know more than we actually ever can may end up being hurtful to others. Curiosity and humility are great qualities to tap into when approaching caregivers and their loved ones.

#17 Loving lessons from a Caregiver

I learned that caregiving is a powerful platform to examine long held beliefs and a perfect motivator to find beliefs that hold up even in difficult times.
And because this appears to be true, there are many lessons we can learn from our caregivers. They might not even realize the gems that they are holding in their hearts.
We all expect to learn lessons from mountain climbers, soldiers returning from areas of conflict, sports' heroes, folks on their death beds even the Olsen twins!
I betcha' when we start listening to our caregivers there will be much to explore.

#16 Loving lessons from a Caregiver

I learned why the airlines recommend that you put your oxygen mask on before you put your child's mask on. Self care is of paramount importance to be able to give generously over the long haul that is usually required. Caregiver burnout doesn't help anyone.
I describe the fact that I was lucky as an athlete to realize this early in caring for Alan. I needed sleep, exercise, music, nature and good nutrition.
What surprised me, as I describe in my memoir Living on the Verge of Insanity, was that my self care fell off completely when he finally was placed in a nursing home. I have now read studies that show that I was not alone and that often the emotions of depression and sadness along with the frustrations of watching an institution care for your loved one surface once they go to a home.

#15 Loving lessons from a Caregiver

I learned that humor can save the day. Humor between the two of you or just finding humor alone in the absurdities.
Funny movies, laughing with friends and in my case laughing with my African Grey Charlie Parker, who has the exact same laugh as me (surprise, surprise) can lighten the heaviness and echo out to others who need a lift.

#14 Loving lessons from a Caregiver

I learned that we are seemingly hard wired for guilt and despair and that there are many ways to fight the pull and stay confident and happy. It was always a struggle. One day at a time is a good philosophy.
The chapter 1,000 acts of kindness in my memoir Living on the Verge of Insanity describes many of the ways I was able to convert impatience and anger to kindness. It also tells of how I kept guilt away as much as possible by knowing how much love was at the core of my caregiving efforts.

#13 Loving lessons from a Caregiver

I learned that sometimes it takes medication or professional services to solve problems. Some issues were beyond my scope.
This is a good lesson for those of us in the healing professions. In acupuncture school the teachers recommended that we NOT treat our relatives. It's a hard lesson because it requires much trust to turn your loved one over to others and assume that they will receive quality care. Yes, and sometimes the care isn't perfect or even near adequate but that only means we need to keep looking for a better situation. Taking the responsibility back isn't the answer when the issues get very technical, such as types and amount of medications.

#12 Loving lessons from a Caregiver

I learned that sometimes looking past the obvious was needed. I learned to look at what was being communicated beyond the actual literal meaning of Alan's words or actions and what would satisfy the situation for what it really was.
Often Alan would call to find me in other parts of the house or when I was out in the garden. In Living on the Verge of Insanity I describe how I realized he was partly defining his existence through my presence. When I realized he didn't literally need ME but was really looking for himself in my presence I could relax because nothing more was required of me. I would answer his call over and over and he found his comfort.

#11 Loving lessons from a Caregiver

I learned that I needed to deeply look at and listen to Alan. Being so attentive allowed me to make good judgments and better decisions about what he needed. I could use this information to help make things easier for both of us.  For me to pre-judge what he would need invariably got us into trouble. There was no formula or blueprint for this. It required real contact with love and sensitivity.

My memoir Living on the Verge of Insanity describes how knowing what was needed didn't always mean I could accomplish it but at least I knew what to aspire to when I was feeling rested and generous of spirit.

#10 Loving lessons from a Caregiver

As I was caring for Alan during the later stages of his Alzheimer's, I learned that my imagination was great "medicine". There is much comfort and freedom in wonder and uncertainty, which I expressed with my meandering mind as I invented stories and created images. I let go of always needing to find answers because often there were none.

#9 Loving lessons from a Caregiver

I learned that nature is a healer for a caregiver's body, emotions, psyche and spirit. Mountains, lakes, turtles, air, snow, flowers, soil, smells, sky, moon, sunsets, stars, sand, birds, deer and rivers all do the trick.
I spent months writing my memoir Living on the Verge of Insanity outside in my tent cabana with Charlie the African Grey on the arm of my chair. We saw foxes, ground hogs, deer and even a coyote pass quietly by. Sometimes I felt like I was in the movie Fantasia!

#8 Loving lessons from a Caregiver

As a caregiver for my long time partner with dementia, I learned that power needs to be watched carefully and negative power needs to be controlled.
There is much trust of the caregiver by the loved one and it is important to honor it as trust. Wanting to be proud of my role as caregiver ultimately motivated me to soften and support Alan's dignity to the very end. This, mind you, was after living through some bumpy times.
I first had to experience the dark places in myself - my impatience, my lack of skill, and my exhaustion - to know I was a full human being with all that brings. But to grow from the experience I needed to find ways to work myself back into being a loving trusted caregiver and partner.
These important issues come in all shapes and sizes and I share lots of stories about how I was able to make the shift to a softer, more open hearted place in my memoir Living on the Verge of Insanity.

#7 Loving Lessons from a Caregiver

During my 8 years of caregiving I learned that allowing others to help me was a sign of my strength and self love. Life is meant to be shared and sharing all types of experiences is what breaths love into relationships.
So often in the early days I would try to imagine getting help with Alan and always came up with a long list of excuses not to. The excuses were mostly based on what I perceived to be other peoples' needs, never considering my own. Once I accepted love and input from others I realized that I had been depriving them of the experience of helping Alan too.
In my memoir Living on the Verge of Insanity I discuss the gradual shift in my views that finally allowed others to love and care for Alan. I saw that he brought music and humor to his caregivers for many years. I was finally happy to share him with them and get the help I needed at the same time.

#6 Loving Lessons from a Caregiver

I learned that living in the present is even more important when big changes are happening. It allows for moments of joy and connection that would be skipped over in a haze of worry about the future. Bike rides, quiet walks in the woods, a hand squeeze, a smile, all would have had a dark cloud over them if the future had been intruding.
In my memoir Living on the Verge of Insanity I describe how often it was Alan who would bring me back to the present by pointing out a turtle on a rock or a baby swan at the shore of a swamp. After a time I learned to have this awareness for myself and we were able to share many years of joy and love together by staying in the moment.