Barely Hanging On

AN INVITATION I invite you to take a journey with me. I’m inviting multiple groups to join us: those who are in their retirement years, and those approaching their retirement years; those who have parents in their retirement years who are presently in good health and those who have parents with an impaired health status. I wish I could describe our journey in the glowing adjectives of a tour guide brochure--such as fabulous, breathtaking, invigorating, but those words just don’t apply to this journey. However, I do hope you’ll find the venture meaningful, informative, helpful and worthwhile to you. I want you to travel with me as I relate my experiences of the last four years. During that period, my spouse went from a completely independent life-style to one of total dependence and incapacity, both physically and mentally. We will travel into the maze of Adult Protective Services, Medicaid and spend-down requirements, nursing home living selection and adjustment, estate planning, home health assistance, legal issues of guardianship, Hospice care and various other related topics. I made the original journey mostly alone, “in the dark”, and functioning, primarily, in crisis mode for the entire trip, and—I was “Barely Hanging On!” As I was trying to navigate the health care maze of agencies, I had to seek out resources and assistance as best I could. There were no guidebooks to help me, to point me in the right direction. Friends would offer information but it was often incorrect. This seemed to make things even more difficult for me. I was flying “blind” for the most part and that made me feel anxious, frustrated, and very vulnerable. It was a very, very stressful ordeal to live through. I’m a Registered Nurse and a Clinical Specialist in Adult Psychiatric and Mental Health Nursing. I’d been working in the Health Care field for over twenty years. Wouldn’t you think that would prepare one to take care of their elderly loved ones? I found my training and background helpful during this period in many ways. Even so, I felt stretched to my very limit most of the time and, sometimes, even beyond. I wondered how people survive in these circumstances when they have no background at all to draw from. My purpose in writing about my experiences is to help you have a smoother, less stressful journey should you find yourself in some or all of the experiences described. My hope is to provide a ready source of information that will give you support and guidance should you have to make a journey similar to mine with one of your loved ones. I have tried to provide a general over-view of some of the agencies you will want to contact for assistance and/or information, and some that you may be forced to engage from necessity rather than choice. The information is general, rather than specific, because each state has its own guidelines, standards and rules under which they operate. However, I am hopeful if you can follow the broad path, it will provide the support you need to proceed on your journey and make the tough decisions required with some confidence and some element of control. Bon Voyage!!