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No Easy Way Out

                                   by Nina Marie Sherrer & Jean M. Kryzer, RN BSN

Getting through the Court system is one thing. Educating ourselves and going through the maze of nursing homes and memory care facilities is another eye opening and often frustrating experience.

This article is not full of statistics and numbers from studies and research. It very briefly explains our shock and awakening to the law and to dementia. It is a wake-up call to caregivers and to anyone diagnosed with dementia – whatever stage or type of memory loss. It is a wake-up call to get involved and help others live to the fullest possible extent that gives them the dignity, respect, and honor they deserve.

It is imperative that everyone realizes the NOW of dementia. What can be done now to help those diagnosed with dementia? They need to live a full life that is laced with dignity, respect, purpose, and compassion. Those living at home with caregivers and/or in memory care facilities need to be treated as the adults they are. Life must have meaning. There is No Easy Way Out around this!

Our parents taught us at a very early age that we could do anything and be in any profession. We didn’t always believe them but the lessons continued. We were taught to find out the answers to our questions. If we truly wanted something, never give up because there is always a way to reach that goal. If one way doesn’t work find another way. Always be honest, truthful, kind, and compassionate. Respect others and their ideas. We were taught to consider the pros and the cons of a problem and understand the direction in which we were heading. Understand there may be detours. We needed to recognize the short term and long-term consequences resulting from our decisions. We were brought up to be strong, independent and to think for ourselves. Mistakes, we learned, are the pauses of discovery. We did not dwell on trusting other people and what that meant.

We believed that most people, especially our siblings, were helpful, good, honest, and compassionate.

Events began happening too fast. When our father died, within ten days our lives and our mother’s life changed forever. We knew our mother’s official papers (Will, Power of Attorney, etc.) were in order and began following her wishes. What we thought was good began to unravel and turn into what appeared to be deceit and greed. Unfortunately her official papers did not matter.

We were too trusting and we were caught off guard.

A brief check by a physician, determining memory loss, can undermine and create havoc in a family situation. How much memory loss enables someone else to take away personal rights and who can take away those personal rights? Our mother’s appointed Attorney’s-In-Fact and Health Care Agents were willing, able and caring for her after our father’s death. But that’s not what some siblings wanted. Unforeseen and uncalled for events, in this case the filing of emergency guardianship and conservatorship petition in court became devastating for our family. Those circumstances could lead to a massive downslide in a person’s mental and physical health. This can also cause alienation and depression for a person with memory loss. What happens to the person with the memory loss and who cares about her? Our mother’s very existence was at stake.

We had to find out quickly what an emergency guardianship and conservatorship was.

An aging and vulnerable adult can be thrown into a strange and unrelenting system due to what? Greed? Anger? Jealousy? Death? When our father died he felt confident his wife, our mother, would be well cared for. We protected our mother following our father’s death. But that lasted less than two weeks. Who asked her what she wanted? Who is thinking of her? Both our father and mother made sure they had official papers drawn up by their attorney. A Will, a Power of Attorney, a Health Care Directive and an End of Life Declaration. For our mother, these papers named those whom she felt comfortable with and people she knew would follow her wishes. Now, she is just a person with a “dementia label” with all decisions made by others. The legal papers she carefully made are null and void. She is considered incompetent by the Court system. One of her children has made her a ward and protected person of the state for LIFE. Our precious mother is now an “unwarranted ward”. Without our father, her loving husband protecting her, the vultures convened, circled and dove in.

We were unaware and did not realize the extent of what was to happen to our mother.

What happens to a person with memory loss when they are thrown into a system? What happens when that person’s finances are depleted because those involved seem to have a self-centered agenda? What happens to this person when they have NO say in determining their life anymore? What is there to live for? Who will help them? Who will know who they are, their true personality, what they like and dislike? Where will they go? Where will they live? Who will take care of them in the manner they imagined in their old age? Or will they just be cast aside in some nursing home to feel lonely, lost, and left out from family and friends. We were on a fast track to discovering the pitfalls of the system. We needed to know how to correct the errors and assumptions that our mother was in danger.

We had to find a way to compromise and stop the spiral, which hurt our mother mentally, physically, and financially.

On his death bed, our father made us promise to “…take care of your mother… Protect her; keep her safe, secure and as happy as possible. Get her anything she may need or want. Make sure she is loved.” Little did we know in two weeks time, after our father died, our world and our mother’s world would turn up-side-down! Little did we know there would be No Easy Way Out to protect our mother and save her from the vultures circling. The first court appointed guardian did not allow visits to a 90-year-old woman either in person or by telephone. There was no threat to her safety. Now our mother was all alone and abandoned. She became a prisoner. She was a person with fewer rights than a prisoner. There just was No Easy Way Out to keep our promises to our father.

We had to find a way to save our mother.

Nothing that is truly achievable to the degree of basic and beyond basic knowledge is easy. We were shocked, upset and angry, and determined to save our mother because no one else seemed to care about her. A crash course in research, learning as much as possible about law, guardianship, conservatorship, where the actual power of the courts lie, led us down paths we never imagined. Our mother’s very welfare was at stake and even though we may have tripped a few times, we would never give up or back down on our promise to our father. We loved both our parents too much to sit idly by while our mother became a pawn, a lost soul, and another throwaway vulnerable adult.

We became the two of four daughters and three sons, making concessions to keep our promise to our father and save mom.

Within eight months we had to make concessions for saving mom. We had to learn there was No Easy Way Out other than believing through education and research we could make a difference and help our mother. We had to keep our promise to our father and help our mother to enjoy life and feel loved. The more we researched, the more we wondered how many more people were in a situation like ours.

How could we help others in a similar situation?

Beware of the vultures hovering. Make sure all the “end of life” paperwork is in order. Make sure you, as a potential caregiver, are ready to fight for your loved one’s wishes, and remember it is their wishes, not yours. Whether you become a caregiver or are diagnosed with dementia you must make your wishes known and make sure those carrying out your wishes will follow your instructions. Find an attorney you can trust. Don’t stop with the proper legal paperwork.

Make a video of what you want to happen to you. Who will take care of you the way you want? Make sure you appoint who will be your voice of the future.

Our next article, Broken Promises, will focus on care facilities and how we discovered not everything is as it seems. Our article Beyond Boredom will show what we learned about the inactivity in a facility. And Playing Nice will discuss and focus on communication with family, the facility, supervisors, and staff.

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