Death, Dying, Family, Hospice

My First Time

Danny was my first. He was a decorated soldier from the greatest generation. He had a twinkle in his eye and an Italian last name which to my dismay he pronounced in an American fashion. I wondered if that had been something his family purposely decided to do in an attempt to blend into American society. He was well into his 80s when we met. Danny had lung cancer and he was my first hospice patient. I had recently finished the Medicare training to become a hospice volunteer when Kay, the Volunteer Coordinator sent out an email request for help.

It was a sad email. In addition to Danny’s illness the family also had another sick member. Danny’s wife of 40 years, Dee, was battling breast cancer. Her prognosis was much more favorable but she needed to get to treatment and while she did that I cared for Danny. My care included doing the laundry and making lunch for Danny. Laundry isn’t always part of the deal but I didn’t put parameters on what this family needed I just did what was asked about 2 or 3 times a week.

Most of the time Danny and I just talked. My family had recently gone to Hawaii and guess what – Danny was at Pearl Harbor on December 7, 1941. That was mind blowing. I had just been to the USS Arizona Memorial with my kids and Danny was there at the bombing of Pearl Harbor. He talked about that day a little and showed me his Purple Heart. I didn’t push him, the memories must have been awful. Mostly we talked about his wife, kids, grand kids and his favorite vacation place Acapulco.

His face would light up when he talked about Dee and their many visits to Acapulco. The man was still clearly in love with his wife which was endearing to witness. He had been married once before and had 5 children with his first wife. He was respectful of that union and didn’t speak ill of her but I suspect there was a lot of conflict. Dee always said that Danny’s children treated her well and that she loved them dearly. I didn’t pry.

I visited Danny and Dee for about 2 months. His children took turns visiting from far away states.I once overheard him tell his son that he thought I was pretty. I’m sure he said it loud enough for me to hear on purpose….he had a bit of charmer left in him. He told me that one of his grand sons did a presentation about WWII which included much of Danny’s experience and accolades. I could tell he was touched by the honor. Towards the end when it was too much for him to watch a baseball game on TV I would read him a recap of the games from the sports page of the local paper.

On what I intuitively knew would be our last visit….Danny kissed my hand and said “you’ve been a real peach.”

Death, Dying, Family, Hospice

Their Stories….An Introduction

I am writing a compilation of stories about people that I have met as a hospice volunteer. I met others through a small business that I run where I fill in the gaps for people when they need help. I have met some interesting people along the way. People always have a personal reason for becoming a hospice volunteer….I mean it isn’t the PTA you don’t do it for your kids.

I became interested in hospice in my late 20s. My aunt was dying of metastatic breast cancer and she appointed me as executrix of her estate. It was an incredible experience because my aunt was a highly spiritual and deeply religious woman. She was young, not even 60 and she met death face on with a grace and dignity that eludes me on a daily basis. We had many open discussions during her final year and it made me wonder what it was like to know you were dying within days, weeks or months? I started to worry that the dying person may not have anyone they felt they could talk to….sometimes the people closest to us are the hardest ones to talk to when life is near the end.

Some people are so close to the dying person that it is too emotionally charged for them to have a coherent conversation. Then again, some can’t communicate when things are great. Toss in a terminal illness and some just go mute or into complete denial. The surviving family and friends generally have people to talk to but the dying person….who do they have? I decided that I wanted to be that person.

So finally 10 years after the seed was planted I decided to become a hospice volunteer through a local hospital. My kids were still young but the preschool hours and some kind friends provided enough kid free time for me to attend the Medicare required training. I had been a stay at home mom for 5 years at this point and it was great to check off a personal goal that was independent of my family.

The hospital I volunteer for has a training coordinator we will call her Kay. When a hospice volunteer is requested, Kay sends out an email to a group of hospice volunteers telling us a little bit about the situation and what day/time a volunteer is needed. Then a volunteer will ‘reply all’ that they can do it and Kay sends a secure email to that individual. The volunteer then has the information to contact the family and the visit is scheduled. Sadly we always have to check in the day of the visit to make sure the patient hasn’t passed, it happens.

A couple of years ago I received such a call from the wife of a man that I was supposed to stay with the next day. Sadly her husband had passed a few hours before she called me. I find it remarkable that she would have the presence of mind to even think of me but she did. We chatted for a few minutes and mentioned that she lied to her daughter and told her that a friend was staying with her that night because she did not want to inconvenience her. I never met that woman in person but I think of her often.

That’s how it is with hospice work. You meet people at this most intense time in their life. Sometimes it is scary and awkward and uncomfortable and other times it is filled with grace, dignity and love. You never know what you are walking into when you arrive at someone’s home. Sometimes the family is close and open and other times you can feel tension in the air from countless family fights and relatives being forced in a room with someone they haven’t spoken to in decades. I go in knowing that these people have an entire lifetime of memories, emotions and conflicts and I am not there to try to sort that shit out. I am there for two reasons: to be there for the patient in whatever capacity they need and to give the caregiver a break.

They, the patients, always leave me behind at some point. Sometimes they hang on well past the point that anyone would have thought they could. Other times they go suddenly….even though they were on hospice you are shocked….they were a fighter and you thought you had more time. Most of the time though I know when our last visit has occurred. More times than not, I will get an extra squeeze of their hand, a knowing look and an extra and most sincere thank you. And I leave knowing I will not see them again.

Though they are gone, they are not forgotten. Many tell me their stories some are funny, others are heart breaking and I hold onto those stories and take them with me. That is our gift to each other……


Nurturing through hospice…..

It’s the #1000Speak topic of nurturing. Well I am a bit of a paranoid nerd so let me make sure I understand the definition first. So I did what any red blooded human would do and googled nurture and this is what came up –

verb: nurture; 3rd person present: nurtures; past tense: nurtured; past participle: nurtured; gerund or present participle: nurturing
  1. 1.
    care for and encourage the growth or development of.

Well I was prepared for the care portion of the definition but encourage the growth or development of was more of a stumbling point for me. I know how to care for myself and others but encouraging growth or development takes it to a whole other level and frankly it is not something I learned in my family of origin. Growing up we were always in survival mode….just getting by to pay the rent and have the necessities there was not a lot of emphasis on personal growth. This is something I had to discover outside of my first little tribe.

What is interesting to me is that the actions required to nurture a person are so individual. For instance, my son can be nurtured with a gigantic bowl of pasta while my daughter will prefer an in depth conversation regarding recess who played 4-square, who didn’t, why they didn’t, do they like me…..and round and round we go. My husband, my children, my mother, my brother, my friends we all have different needs so the manner in which I nurture them varies by person and circumstance.

One thing that has been tricky about motherhood is finding ways to nurture myself. The obvious ones – eat right, get enough sleep, exercise, take time for yourself, shower regularly…..seem like monumental tasks when you are raising tiny humans. The early years are rough and that time just gets stretched more with each additional child. I made it through babyhood, preschool and the early elementary years and most nights if I can’t sleep it’s due to my own diabolical hormones and not night terrors. So my self nurturing takes me to the gym, out to lunch and helping others.

Yes for me nurturing others (outside the family) also nurtures my soul. It is natural to care for close family and friends but stepping outside that circle is also rewarding. For the past 8 years I have been a hospice volunteer. When I tell people that they either cringe or smile, few people are lukewarm about hospice. The ones that cringe tend to have a fear of death for themselves or someone close to them. The people that smile have usually been an eyewitness to hospice work, it is beautiful.

For those that aren’t familiar hospice is an approach to terminal care. It is the point where the patient decides that they want a different course of treatment. Instead of curative care they seek more palliative care basically comfort measures. My role in this varies by situation. I volunteer to provide respite for the caregiver. I stay with the dying person so their primary caregiver can take a few hours to do whatever they need to do. I’ve had dozens of patients in the past 8 years and while they share some similarities each one of them needed to be cared for in a unique manner. Sometimes I will read to the patient other times we will discuss current events or swap travel stories. Sometimes I make meals or tidy up the house it really depends on what is needed.

It’s an odd niche to get into and people always ask “why”? Of course I had personal introduction….I don’t think many people read a textbook and think….hmmm….I want to give that hospice thing a whirl. No most people that work or volunteer for hospice have a personal story. For me it was my aunt who was a chaplain and died from metastatic breast cancer at the age of 59. Her faith and ability to face death with a practical and loving heart gave me my first adult glimpse at the dying process. I was 29 when she died and was on the corporate fast track. It took another 10 years and many major life events to get me on the path to being a hospice volunteer. The seed was planted though and I am fortunate that I have been able to devote some time to something so important.

So what is the allure of hospice? To me I find it similar to when a new baby comes home. There is usually a lot of activity and well meaning visits, some family tension but mostly people tend to get their priorities in order. Suddenly the size of Kim Kardashian’s back side becomes unimportant and people can focus on what really matters in life – love, kindness, forgiveness, letting go, faith and hope. Now this isn’t a universal process but the end result is pretty consistent.

Perhaps that is another pull toward hospice. Maybe I just want to learn more about this universal truth that we all must face one day regardless of race, religion or whatever color socks you happen to be wearing…..we are all going to die. I find it interesting that while this is something we all know on an intellectual basis not many are willing to look it squarely in the eye. My hospice work is my way to acknowledge death and perhaps make some friends that can guide me when I get to the other side. And the stories……the stories they tell me are great and I am privileged to listen to them.