NORMAL Doesnt Live Here Anymore: An Inspiring Story of Hope for Caregivers

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Karen Bromberg

I then left RMU and transferred my credits to Chatham University, completed my undergraduate degree in psychology and then my graduate degree in Counseling Psychology, all the while achieving a certificate in horticultural therapy and starting a non-profit. While I was in my studies at Chatham, most of my elective courses were in death, dying, and grief counseling. Still struggling somewhat with the loss of my father, my second parent—my mom died when I was 22 years old—I felt disconnected from the world, about as unpredictable as nature.

Searching for a way to keep evolving, I planted, with the help of my family—including our soon to be son-in-law, Josh—my first vegetable garden. Always an avid gardener of flowers, moving forward with the idea of nurturing the body, mind, and soul through vegetable growing became a passion. I found working with the plants holistic and healing; soon gardening provided a space for me to come to terms with the identity loss that so many experience with a loss. As I began to reconnect, a dream from my late father divinely inspired me to begin helping others to feel the same way.

In , at the age of 47, I founded Hope Grows , a nonprofit providing support to caregivers, mainly family caregivers. Our mission is to inspire hope through nature while empowering caregivers to seek wellness of mind, body, and spirit. Our core values are deeply embedded in the belief that nature and the natural world are therapeutic and that wellness can occur through mindfulness, positive thinking, and a connection of mind, body, and spirit. Our services include counseling and support through mental health therapy, peer support groups, and education.

We offer therapeutic respite through the use of essential oils, nature walks, labyrinth walks, and programming that allows the caregiver a short break. We are developing a professional caregiver model of stress management, compassion fatigue, and mediation between the professional health staff and the family caregiver. In , our third year as a nonprofit, Hope Grows served, on average, 50 caregivers and care recipients every month, and has provided 62 hours of education, 96 hours of therapeutic respite, and hours of volunteer service.

We have a very active board of directors with seven individuals currently helping to run the nonprofit, donating their time and energy to carry out our mission. I am the volunteer Executive Director, counselor, and go to person but I do hire sub-contractors to help with our programming and activities. I also do speaking engagements, typically by word of mouth and referrals.

I only charge when I am presenting on a topic that is educational in nature, such as stress management or compassion fatigue. I do not charge when I am presenting about Hope Grows and advocating for the need to support family caregivers. I typically ask for a donation to the organization. Most of my speaking has been local but I just recently received an invite to present to an agency on aging in another county in Pennsylvania. The goal is to help them return home with coping skills that will allow them to increase their quality of life and decrease the occurrence of chronic illness.

Providing Care for the Caregiver | NAMI: National Alliance on Mental Illness

There are five healing and restorative gardens on the property and we have plans to develop the remaining acreage. We are applying for a county grant to be able to complete the zoning required for house renovations and the development of the remaining gardens so that we can open our doors to caregivers. Studies show that caregivers are in worse health than others due to lower levels of self-care; they have an increased risk of heart disease, show more frequent signs of depression, and suffer from high levels of stress and frustration.

They pay the ultimate price for providing care—an increase in mortality. This is why our mission is so important to me and hopefully to all of you, building awareness of the need, creating a unified front with larger caregiver communities, and developing a model that will empower caregivers to seek wellness of mind, body, and spirit. I remain passionate about achieving our vision in putting a stop to the ultimate risk of caregiving, death!

Caregivers should not die for providing care to others and your help is needed. Sorry, I really get passionate about educating people on the need for this support. The inspiration for this work with the nonprofit is rooted in my love for my father.

NORMAL Doesn't Live Here Anymore: An Inspiring Story of Hope for Caregivers, by author Barb Owen

His death inspired this change and after he died I learned there was not enough support for the family caregiver and their families. I believe in the power of the connection between people and plants, and the maintenance of optimal health through a holistic and mindful focus. I recently have been told that I am a Renaissance woman, but I consider myself to be a trailblazer—through the garden path—in providing a new way for the healthcare industry to view the silent client, the family caregiver. I believe I chose this next act to be able to share this vision and empower the community to become part of the mission.

I did not consider other options. I learned through my journey of grief is that listening to my higher self intuition or gut feel became the fuel for finding my purpose. I continue to always reinvent me within this spectrum of purpose. I have always been someone who was extremely aware of me, but I continue to learn about mindfulness in that spectrum of mind, body, and soul awareness. I also learned through the path of sadness, that spirituality played an unexplainable role in the determination to make sense of my loss and how it was affecting my entire being, mind, body, and spirit.

I followed my heart and intuition, that gut feel that I have always listened. Before my dad died, I used to be the type of person that when a door closed an opportunity I would stand behind it not literally and contemplate what I might have done wrong. To this day, I feel like I had a spiritual push that continues to drive my motivation. I have never been purpose driven but this truly has become my purpose.

Retiring to Become a Caregiver

From the start, I knew Hope Grows needed to be a nonprofit because family caregivers could not afford to receive services. This type of support is also not reimbursable through health insurance. After graduation, I began working in the hospice field as a spiritual and bereavement counselor while working towards my credentials to become a Licensed Professional Counselor and a certified Thanatologist someone who is trained in the studies of death and dying. Just recently, I left that position to devote myself full time to Hope Grows. I saw it as opportunity for growth, and evolving, and reinventing.

I am a cautious risk taker and typically not afraid of taking chances or changing, so I think in part with my Type A personality, I saw it as an adventure. In addition, when one works through grief, a part of that journey is reinventing your identity while finding a place for the memories of the one you lost. I was searching for a new identity. I began by seeking out resources and support in the nonprofit area, and then researched how to incorporate and start a nonprofit. I looked at local resources and went to workshops to learn how to start a nonprofit.

I continue to educate and surround myself with people who know more than I do. Chuck and I with our children and grandchildren. My family and friends were and still are very supportive. Two of my high school friends currently serve on the board of directors for Hope Grows.

One in particular, Denise, was very supportive of my passion and desire to achieve my degree. I would have to say, my spouse was not as supportive as I had hoped in the beginning. I mentioned that I was a housewife and mother first and Chuck was comfortable with this arrangement and with being the breadwinner. Chuck serves on the Board of Directors and helps out wherever he can.

I have a nephew who also serves on the Board of Directors. My niece has given many volunteer hours helping with administrative work. My children and their significant others help with garden maintenance and attend all of our events and support and help in any way they can.

I have extended family, sisters and brothers, in-laws, nieces and nephews, aunts and uncles, cousins, and friends who contribute time and donations, and support in any way they can. I am blessed to have so many loving members of my family and extended community, people who believe in me and in my ability to take Hope Grows from an idea to a sustaining organization.

I n November , when I was 25 years old, I moved in with a man who was Although my background was in clinical psychology, I was by no means a professional caregiver. But it was a lament, not a diagnosis. And this denial, both clinical and profoundly human, led Sam to misjudge the illness as well.

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Mr Schecter lived in a two-bedroom apartment on a pleasant, tree-lined street in the Bronx. For a man nearing , he was amazingly spry. Short, solidly built, with a firm handshake, Mr Schecter exhibited at our first meeting all the hallmarks of dementia. He repeated himself, his mind wandered, and he asked the same questions over and over. More than anything else, he wanted me to understand that he had agreed to the arrangement only as a concession to his son. The unimaginative furniture, framed pictures of grey city streets and sombre landscapes, and hundreds and hundreds of jacketless books, as many in Yiddish as English, seemed to contain the world of my grandparents.

I had grown alienated from my studies and had recently ended a relationship that had both consumed and confined me. I felt adrift, unsure of what to do. So when I learned that Mr Schecter, like my maternal grandfather, had been interned in a Soviet labour camp during the second world war, I naively thought I could protect him, that I could somehow compensate for the resilience that had sustained him in the past. But I had another reason as well.

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Having studied pathology primarily through the dispassionate lens of quantitative analysis, I saw Mr Schecter as an opportunity to observe how a person fights to preserve his sense of self, even as a neurological disease is eroding it. For unlike diseases that attack the body, dementia, by degrading the physiology of the brain, induces an altered state of consciousness, a consciousness both like and unlike our own, both a mirror and a mask.

Dementia , of course, has been identified, classified, and even anatomically annotated. Having lived with a dementia patient for more than a year, I am not sure I agree.

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Memory is responsible for creating continuity, meaning, and coherence both for ourselves and for those around us. Its integration into every function of life, from speaking and learning to the forming of relationships, actually makes its loss all the more difficult to comprehend, since the visible repercussions — repetition, confusion, anxiety, and mood swings — distract us from the deeper, more intangible privation. About 5. By the affected population is projected to triple. In the UK, dementia affects about , people. Dementia not only affects the minds of its victims; it also creates a world so fragmented, so skewed and redundant — so indifferent to normal rules of behaviour — that caregivers unwittingly become part of the madness.

And this, unfortunately, is what the doctors and the guidebooks offering counsel to caregivers often fail to notice. Where do your parents live?