Caregivers have a great gift to share with each other — their stories

A few weeks ago I attended a local support group meeting. Later I was thinking about the number of support group meeting I had attended over the years since my mother passed away and the number of people I had met. Some had only recently found themselves in a caregiving situation while others had been in that role for some years. I realized that in almost all these meeting there were only a handful of people who had been through a caregiving role and the eventual loss of their loved one.

I started thinking about the possible reasons for this departure from the support group community. I assume in many cases at one time former members of the support group shared feeling of grief and anger. While it is totally understandable there is the factor of distress and grief after the death of their loved one and having to find a way to move on (everything has a time and a place). I began to also think about and recognize the gift experienced participants have to offer to support groups even after the death of their loved one.

I then recalled one time we had a caregiver and wife in one support group who would relate the difficulties she faced over the years of caregiving for her husband to the group each meeting. In mid to late stages her husband would frequently become angry and occasionally violent. How some people had suggested a range of options or that she seek professional care for him, and then there were even those outside of the situation itself who had suggested that after almost 48 years together she divorce him. All along she showed strength of character and inspiration to others in the group despite the grief and anger. She spoke of the lingering disbelief and years of loneliness that dwells with many in support group families.

She taught others that the most difficult times eventually pass and that patience, love and peaceful days can find their return. She taught about stretching beyond the grief and anger by reaching out to those who share a common path, how difficult it can be for caregivers to feel that they have the energy to open up to others. She may have felt that same reluctance in the early years. And yet, she's an example that on the other side of isolation sits connectedness, offering a way to greater resilience and ease. And perhaps what I love the most, she is an example of living through life's heartache with dignity and grace.

After the passing of her husband just one month shy of their 55^th wedding anniversary she continued to attend the support meeting before announcing to the group that after many years of attending the support group, she felt she didn't have much to offer anymore. She said perhaps she should move on.

Form the support group perspective her gift was her willingness to be vulnerable and to share her story, her beautifully imperfect life — a life that offered lessons in resilience, dignity and hope. And when she shared with others (and us) in her support group, the notion that we were disconnected dissolves. Perhaps this was the gift she received in return.

Without a way to share stories and struggles a caregiver experiences, we are all left feeling lonely, indifferent and out of touch with our life's meaning and purpose. We can end up feeling unworthy, unloved and even sick. Sharing and telling our stories with others who will listen and who really care may be the most powerful medicine on earth.

I encourage you all to find ways to connect and share your story — this will be a lasting gift to you. Listen with empathy to others who share their story — this is the gift you give to one another.

Know that “You Are Not Alone”.

In other  words, "it will be all right."

At Some Point It’s just Time

Most of us can probably remember a time in our lives when we promised something to our parents and then chose to do the exact opposite or at least not think first before making a decision which in hindsight is actually what you had promised not to do. When my mother was first diagnosed with Alzheimer’s I naively believed that I could handle pretty much anything that we had to do. My mother made my brothers, sisters and I promise to allow her to end her life at home.

We managed to keep her at home for almost 11 years before it became obvious that we just couldn’t manage it any longer. For much of that time she was on a trial drug program which we believe now prolonged her quality of life for at least two years longer. But after being advised by the doctor and after many heart wrenching discussions and family debates, we as a family decided it was time to accept that we could no longer care for her at home.  Emotionally our thoughts always seemed to go back to the idea that taking her off the test drug and placing our mother in the nursing home we were somehow signing her death away.

Circumstances change almost daily for the Alzheimer’s patient, their families and their caregivers. Planning ahead is near impossible. In fact, my parents had dreams of travelling in their retirement. My mother wanted to visit Ireland, my father wanted to visit former work contacts from various places around the world. But once the diagnosis progressed this became more difficult to do. Reality of Alzheimer’s is there is no way to predict the progression of this disease. Each individual is different, different symptoms, different behaviors, and different time lapses between each. Some behaviors related to Alzheimer’s have their own issues. Issues that only another caregiver could understand; “sundowners”, “repetition”, “obsessiveness”, “want to go home.”  Some, Not all, Alzheimer’s patients may become violent.  One caregiver may find a behavior particularly hard to endure, while another caregiver may be disturbed by a totally different behavior.  

Many Alzheimer’s patients yearn for “home,” the place of their youth that no longer exists. They’ll walk and walk and walk, if unprotected by open (unlocked) doors. Much like a young child, they can be in grave danger of becoming lost or walking into traffic or accepting a ride from a dangerous passer-by. If you aren’t able to keep the patient in a well-protected, locked area, you may want to look for other living facilities. Eventually, no matter how hard the family or caregiver tries, there comes a time when you realize that the Alzheimer’s Patient just needs more care and may need more medical treatment than you, the caregiver, is able to provide. It’s time where the best option is professional care in an Alzheimer’s specific care facility.

My father began searching for the right place for our mother to go. The thought was not a happy one, we all dreaded it. We knew the search would be awful, thinking we’d never find one that met our ideal situation for our mother’s care. In a way we were lucky because as a result of my father’s career success, he was in a slightly better financial situation than others. He still commented on the fact that he felt like he was ‘Hawking’ my mother like some product for sale, trying to sell the nursing homes into ‘Accepting her’ as a resident rather than them wanting to help solve our issue by placing her. A situation we later expressed at numerous conferences and groups as we represented caregivers of those who were unfortunate enough to be diagnosed with Alzheimer’s or any other dementia related disease and the day to day issues that are dealt with.

Eventually we found a place where my mother would end her days. Thankfully it also happened to be the place she had been too previously for day respite. A vacancy had opened and we were able to get her placed there. But then we realized that the vacancy resulted by someone else’s family member had passed away and they were mourning the loss off their loved one. AND that’s why the vacancy became available. For the remaining time of my mother’s life my father, brothers, sisters and I would spend numerous evenings at the nursing home trying to help the limited duty nurses with my mother and other residents. We watched her deterioration of the next six months all the time hoping her pain would end soon. Even after my mother’s passing we still had the feeling there was an obligation on behalf of her for us to do whatever we can to help others through the caregiving role.

Final Note:

My parent’s dream of travelling was fulfilled somewhat towards the later stages.  They did travel to Ireland and then to the United States to visit friends on a final fling. But when we look at the photos of that trip in the majority of them my mother just looked lost and confused. All except in one photo. In that photo she looked like she knew exactly where she was, but in the background of that photo are the Twin Towers which only a few months later were to become a reminder world wide of a tragic and horrific event.