Hospice Giving Foundation for those who live as well as for those who are dying

It was about 4.5 years ago sitting in my busy office at a Child Advocacy program when I got the call. “There is a job you need to take.” My friend and sometimes mentor didn’t know how swamped I was at work. I told her I was too busy to apply for or think about another job, plus I loved my work. She respectfully disagreed.

So, a week later I was on the phone with the recruiter—the pre-screeners. They asked about every job I ever had—I left out the grocery clerk at age 16. They talked about this new position and I was mildly intrigued. My head was in the upcoming fundraiser my current organization was holding. A couple of days later at that event I felt tears well up in my eyes. I realized I was about to embark on a journey.

A few days later I talked with the head recruiters – this time over Skype. My 100lb labradoodle made sure to be included for a brief on-screen visit. He may have sealed the deal! I finally met the local board members in person, and wondered if I could turn back.

So, what does anyone do when they are torn about a decision? Call someone who will talk sense into you. I called one of my older sisters, sure she would tell me to sit tight, stay with the kids in the foster care system. Instead she brought it home. “You’ve given a lot to those kids and that is great, but there is something else you need to do. Think about Mom and Dad,” she continued. “We had no one giving us advice or guidance. No hospice care to help either of them. If you can do anything to help people not go through what we did—or what they did—then that’s what you have to do.” Of course, she was right.

Our parents both died in the same Long Island nursing home several years apart. It was a good place, clean, well-run, with kind people. Despite that, my brothers and sisters and I were overwhelmed and deeply uninformed.

Over his last two decades our Dad had many health problems: a heart attack, strokes, cancer, and the cruelest of all, Alzheimer’s. Our mom and my sisters in NY tried to keep him home, but that wasn’t safe. I was here in CA; one brother in Oregon, and one in Florida. Decision-making at distance is heartbreaking. I vividly recall sitting on my patio crying as the five of us conference called to decide about lifesaving measures. My mom had too much guilt and pain to weigh in. He died the day after Valentine’s Day in 2002. I remember exactly where I was and what the call felt like. The emotional drain and exhaustion from the years almost overshadowed our profound sadness. Our Dad was a sweet, quiet man. No one should suffer like he did. For us, next steps took priority; almost no time for reflection, and no one to encourage us to do so.

On her 90^th birthday our mom was ‘holding court’ surrounded by her children, grandchildren, sons- and daughters-in-law, and extended family. She was fully capable and sharp-minded. We were sure her final days would be on her terms. The crushing reality came about a year later when infections lead to episodic delirium. Devastated by her rapid-onset confusion and what looked like severe dementia, her five kids were struggling to understand. No one even explained delirium to us. No answers, no guidance, just expected to make decisions. She had had short stays in a few nursing homes along the way. Hated all of them. My sisters and I set our mother up in her final nursing home and the next the day I set my daughter up in her college dorm on her 19^th birthday. Not a schedule I recommend. Mom went through periods of catatonia, severe confusion, and hospital visits to address infections. All she wanted to do was the impossible: to go home. I remember asking about hospice. I was told no, not appropriate. I now know that hospice care was exactly what we needed. Mom died the following March, a mere shadow of the woman she once was, with my sisters at her side. She suffered a great deal; as did her children, our husbands and wives, and her grandchildren.

“Love each other and find the ways to keep remembering the joy in the person you love.”

My friend was right. My sister was right. My head thankfully caught up with my heart and allowed me to make the right decision. Each of us will leave this world; that much we know. It won’t be perfect, but it can be better. Here is what I have learned. Plan so the decisions, while always hard, won’t be gut wrenching and painfully burdensome. Have the conversations before the crisis, so each of you have the chance of saying what you want. Love each other and find the ways to keep remembering the joy in the person you love. Ask for help. Ask for help. Ask again if you don’t get it.

At Hospice Giving Foundation, we are here to fund the care and, as importantly, to provide you with the education and tools to guide you through this process. We’re here to give you that help.

Recently I talked to a crowd about what the letters ‘HG’ might mean, if not Hospice Giving. At least for me, here at Hospice Giving Foundation they mean Help and Guidance, Honestly and Gratitude, honoring as we say Goodbye, as well as the thing we all need during our toughest times: Hope and Grace. Please join me in this journey to make our community one that gives families all the HG we possibly can.