police lights

The Boy Scouts of America have adopted the motto, “If you fail to prepare, prepare to fail.” I like this motto since I am a fan of organization and thinking ahead, but I find it particularly apt when applied to caregiving – and when I talk to caregivers. Preparation is the caregiver’s – or potential caregiver’s – strongest weapon.

My family was very firmly planted in denial when my Father began showing signs of cognitive failure. We didn’t want to know what was right in front of us, and Dad was scarily resistant to any suggestion of illness or infirmity. Unfortunately, Dad’s symptoms only got worse – and they started to be more noticeable.

I received a call from the local police one afternoon asking me to come to an elementary school several miles from Dad’s house where he had been found on the playground – confused and disoriented. Nothing like this had ever happened to my sister and I before. We had no experience with aging, illness, caregiving, professional caregivers, facilities or anything of that nature.

We had nothing prepared: no will, Living Will, or Power of Attorney; no access to, or information about, Dad’s finances or investments; and no idea about how to find professional care that would meet Dad’s needs. And Dad was still living in his house – alone.

The second call also came from the local police, but this time it was early in the morning. Dad had been found again, far from home, cold and disoriented, only this time they took him to the ER for care. We had just been put on notice that the situation needed to change drastically. Fortunately, we hired a wonderful care manager who found 24-hour care for Dad so he could stay in his home, and she helped us sort out his life.

Looking back, I shudder at how our denial and lack of knowledge and preparation could easily have resulted in a terrible tragedy – for us or someone else. We had months and months while Dad worsened in which to start doing research, investigate legal and financial paperwork, and get information on resources that could help us.

Every time I hear a story from a caregiver about a loved one’s sudden injury or illness, leaving them only a day or two to find the right care, so they have to settle for a less-than-perfect care solution, I feel sad – wishing that they had started researching care options in preparation for a serious event as soon as their loved one’s health or mental state began to falter somewhat.

This is why I tell all of the potential caregivers I talk to – and many of my friends – that they need to be prepared. Find out about legal requirements in your area, investigate resources, find a lawyer and a good doctor, research in-home care services and tour local facilities. That way, vital help and information will be at your fingertips the moment you need it.

There are so many more resources now than there used to be. Go on-line and look for information about your particular situation; I can guarantee there is plenty of it. The Family Caregiver Alliance with their state-by-state listings of help and resources is a great place to start.

Even if you don’t plan to do anything with the information yet, or the situation isn’t too bad, or your family member is in denial about what is happening…start now. Prepare for the best outcome, not for failure!

Written by Joy Walker
I started my journey as a caregiver advocate ten years ago, when I made the difficult decision to move in with my father to be his part-time caregiver. At the time, we thought he was suffering from Alzheimer's disease, but it never quite seemed to fit the symptoms and behaviors he was showing. Ultimately, we would receive a diagnosis of Lewy Body Dementia, which was where my interest in the disease began. I am a hospice worker, bereavement counselor, caregiver advocate, LBD support counselor, and caremanager for my father. I am also a writer, whose main focus is writing about caregiving, dementia, aging, and end of life issues. In 2011, I published a memoir about my experiences with Dad; I maintain an award-winning blog; I have published essays in two anthologies; and have written articles for other websites. My hopes for this site are to bring together all the elements of my work and vocation in one place. I strive to provide the most comprehensive and up-to-date resources and information, and the most helpful support and empathy to caregivers and people living with dementia. I invite you to investigate my site, check out the links, and read my award-winning blog, in order to find exactly the resource you are looking for.

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