Hospice

Saturday was my first day to make Hospice calls on my own. Although I wasn't as frightened as I was my first solo volunteer patient care experience, I was nervous. There wouldn't be any counselors in the building, so I was truly alone.

I had two stacks in my box. One was a set of five files that somehow became lost for seven months. Normally, the family receives calls from Hospice 4-6 weeks after the death of the patient. I decided to tackle that set first.

I looked through the first file and took notes of things I found that would help me to have a fairly knowledgeable conversation with the family members. Then, I started dialing. My fingers were literally shaking as I was punching the numbers on the phone.

The first call out of the gate was complicated on many levels and lasted about 45 minutes. The call was to the daughter of the patient. As I mentioned in a previous post, I was told that most calls would be 5-10 minutes. But my two practice calls were about 30 minutes, so 45 minutes didn't seem out of the ordinary to me. What was unsettling was what I heard this woman's husband say as he was handing her the phone; "It's Hospice calling. Why would they be calling you NOW?". That made me nervous, and I didn't know what to expect.

It turned out to be OK, and after hanging up I felt that it was almost a blessing that she was receiving the call now, rather than when she should have received the call. Her life was completely upside-down right now, and I also heard signs of complicated grieving, so I left a note to one of the counselors to give her a call.

Another call, also over a half an hour, had interesting timing as well. This woman had just come home after visiting her mother's house for the last time. She had to sell the family home- the home she grew up in- and had just come back from her final visit there. She seemed relieved to have someone to talk to about the experience, and I was glad that I so happened to call her on that day.

We've been given the guideline of only making calls for two hours and that was my intent. However, I just kept thinking, "one more". 'One more' turned into just over four hours by the time I was done. By this time, I understood the reason for limiting ourselves to two hours at a time. Talking to so many people in various degrees and stages of grief can be emotionally draining; especially when your intent is to give them 100% of yourself.

I really connected with some of the people that I talked to and I know without a doubt that they could feel that I cared about them, even though I'd never met them. I had five calls that lasted for more than 1/2 hour and those calls were very meaningful to me. There is something really cool about connecting with someone on that level, and I am really looking forward to going back next weekend.

When an old lady died in the geriatric ward of a small hospital near Dundee, Scotland, it was believed that she had nothing left of any value. Later, when the nurses were going through her meager possessions, they found this poem. Its quality and content so impressed the staff that copies were made and distributed to every nurse in the hospital. One nurse took her copy to Ireland.

The old lady's sole bequest to posterity has since appeared in the Christmas edition of the News Magazine of the North Ireland Association for Mental Health. A slide presentation has also been made based on her simple, but eloquent, poem. And this little old Scottish lady, with nothing left to give to the world, is now the author of this "anonymous" poem winging across the Internet.

It meant a whole lot to me, so I wanted to post it here in case you were missed in the email rounds.

Crabby Old Woman

What do you see, nurses?
What do you see?
What are you thinking
When you're looking at me?

A crabby old woman,
Not very wise,
Uncertain of habit,
With faraway eyes?

Who dribbles her food
And makes no reply
When you say in a loud voice,
"I do wish you'd try!"

Who seems not to notice
The things that you do,
And forever is losing
A stocking or shoe?

Who, resisting or not,
Lets you do as you will,
With bathing and feeding,
The long day to fill?

Is that what you're thinking?
Is that what you see?
Then open your eyes, nurse,
You're not looking at me.

I'll tell you who I am
As I sit here so still,
As I do at your bidding,
As I eat at your will.

I'm a small child of ten
With a father and mother,
Brothers and sisters,
Who love one another.

A young girl of sixteen
With wings on her feet
Dreaming that soon now
A lover she'll meet.

A bride soon at twenty,
My heart gives a leap,
Remembering the vows
That I promised to keep.

At twenty-five now,
I have young of my own,
Who need me to guide
And a secure happy home.

A woman of thirty,
My young now grown fast,
Bound to each other
With ties that should last.

At forty, my young sons
Have grown and are gone,
But my man's beside me
To see I don't mourn.

At fifty once more,
Babies play round my knee,
Again we know children,
My loved one and me.

Dark days are upon me,
My husband is dead,
I look at the future,
I shudder with dread.

For my young are all rearing
Young of their own,
And I think of the years
And the love that I've known.

I'm now an old woman
And nature is cruel;
'Tis jest to make old age
Look like a fool.

The body, it crumbles,
Grace and vigor depart,
There is now a stone
Where I once had a heart.

But inside this old carcass
A young girl still dwells,
And now and again,
My battered heart swells.

I remember the joys,
I remember the pain,
And I'm loving and living
Life over again.

I think of the years
All too few, gone too fast,
And accept the stark fact
That nothing can last.

So open your eyes, people,
Open and see,
Not a crabby old woman;
Look closer . . . see ME!!


Remember this poem when you next meet an old person who you might brush aside without looking at the young soul within.

Yesterday was my first day to make calls on behalf of Hospice. Before we're set free to make calls on our own, we have to make calls in front of the bereavement counselor. I was nervous even though I'd had hours of training on top of all of my Hospice experience. I knew I'd be fine when alone, but there's something about being listened to by a pro that scares me. It sort of reminded me of how nervous I used to get at my piano recitals.

I had twelve years of piano lessons and was used to playing in front of large crowds at county fairs, malls, restaurants, etc., but the piano recitals always got to me. I hated them because I knew I'd be playing in front of professionals.

The counselor handed me my first case file. I looked it over and read the history of the patient and looked for any notes written by the Hospice workers to see if there was anything that might be an issue. There were notes in the file about an emotionally unstable family member, and I brought that to the counselor's attention. She asked if I felt comfortable in making the call, or if I wanted to move on to something less complicated. I decided to go ahead and make the calls.

My first call was to the wife of the deceased. As I pushed the buttons on the phone, I felt very unsure of myself. What if I screw this up? What if I say something stupid? This woman has lost her husband, and I take that responsibility seriously.

She answered the phone and I told her my name and told her that I was a volunteer with [name of my Hospice org] Hospice. My first mission is to ask if she's received the mailings and ask if she had any questions about them. Then there is a list of things that I need to try to work into the conversation to get a feel for where she is in the grieving process and how she's doing in general. It needs to be conversational, so it doesn't sound like we're going through a checklist.

About two minutes into the conversation, I relaxed. This was a lovely sounding 84 year old woman who was so happy to hear from me. She shared with me how her life has been since the death of her husband and I listened. I suddenly quit being a Hospice volunteer, and resumed my normal personna as a listener. As I was listening to her talk, I'd look over at the counselor every now and again just to get confirmation that I was saying the right things. She kept mouthing "wow" as the conversation got longer and longer. I ended up talking to this wonderful lady for almost a half an hour and I could tell in the end that it was good for her to talk to someone. It was good for me too, because I felt like I was doing something important.

After I hung up the phone, the counselor told me that it was an excellent call and that I sounded very affirming and caring. She said that she was impressed that this lady shared so much with me. Normally, the calls are maybe 10 minutes long. Mine was a half an hour.

Next was the son. It was unclear whether I was calling a cell phone, work phone, or home phone, so I was nervous about that. I planned in my head what I'd say if it was work, because certainly I don't want to put someone in a position of talking about their grief while at work. Fortunately it was his home, and he was there. Again, my nervousness melted away as I talked to him and I just became me, and listened just as I would to anyone in my own life. This call was a bit more complicated, and it had to do with the unstable family member. He shared with me that this family member has been emotionally abusive to their mother and to him. He was also worried about his mother's physical safety. I was writing notes to the counselor as he was telling me this information so she could help me in what to say to him. We ended up writing notes back and forth while he talked to me and I would pass along information that the counselor wanted me to share with him. Eventually, I asked him if it would be OK for her to call him next week so she could help them with the situation. He was grateful for that offer. This call lasted 20 minutes.

Again, the counselor told me that this is not the norm. That I shouldn't expect that people will be talking to me and giving me all of this information. Apparently she doesn't know my reputation.

That is all the time I had alloted myself, because I was basically using my lunch hour (+) to do this last bit of my training. I will be going in on Saturdays to make the calls as soon as they can get the logistics worked out.

It felt good. Really good. I was so energized after this hour and felt once again that this is what I am supposed to be doing with my life. Whether it's as a grief volunteer or maybe later as a professional grief counselor, I know for certain that this is what I'm supposed to be doing.

My husband's father passed away about four hours ago. You may be wondering why I'm blogging about it and not sitting by my husband's side.

....I wish I could be by his side right now.

My husband left on a business trip this morning. He's in another state and can't get home until tomorrow morning. It's a small state and the airport is closed for the night. He missed the last flight out by 15 minutes. So, my sweet husband is in a strange city, left to deal with the passing of his dad all by himself.

I'm heartbroken for him. I want to hold him and comfort him but I can't. I literally ache for him right now. His dad was so special to him.

His dad was a special man to everyone that knew him. I can't begin to count the number of times I've heard people say "he's my hero" about this man. But his biggest fan was his son; my husband.

This has been a strange journey for me, a Hospice volunteer. I've never experienced death up close and personal, except through my Hospice volunteer experiences. My very special Aunt died suddenly in her sleep which is a whole different experience. And it was also an experience that I deal with a lot better. It's more difficult for me to see people I love in pain than to experience it myself.

My husband's dad didn't die suddenly; at least not until the end. In respect for my husband's privacy I won't go into detail, but being a Hospice volunteer did not give me any advantages. It was almost a disadvantage for me because I saw things I didn't want to see. I knew things I didn't want to know. I knew things my husband's family didn't want to know. On one hand I wanted to tell my husband what I felt was happening because I didn't want him to be sideswiped. On the other hand, I'm not a doctor and I am not an expert on dying. After all, I could have been wrong about what I saw. So I kept quiet and had to watch it all play out.

I am not sure that it was a blessing in disguise, but my father-in-law didn't realize how sick he was until he received a questionnaire in the mail from his medical center asking if he felt his doctor was dealing with his fatal illness properly (I'm paraphrasing.) My father-in-law was surprised to hear his illness described in this manner. He never really thought of fact that he had a fatal illness. This happened in December. I was appalled that he had to find out in this way.

The next time he went to the doctor, he was told, "Well, I assumed you knew". Then gave him a prognosis of 2-3 years. My father-in-law told us all that he 'knew' the doctor was just being cautious and told us all that he felt he had another 10 years left.

I knew better, but I gave him the respect and dignity of having his own reality.

Although my husband saw his dad just about every day after that, I only visited on weekends. About three weeks ago, I saw signs of end-stage. This is where I don't like being a Hospice volunteer. I saw things that nobody around me saw. I wrote an email the next day suggesting that they ask their doctor about getting a visiting nurse or something, "just to help out". I was given an emphatic "NO!". I beat myself up for days about that. It wasn't up to me to try to change their reality. Two days later they went to the doctor and the prognosis was moved up to "weeks, maybe months". Then the doctor suggested Hospice. They gave him the same answer as they gave me.

Ironically, this day was the same day I finished my grief and bereavement training with Hospice. I have to wonder about the timing in all of this. This journey I chose for myself would start right here in my own home.

We visited two weekends ago and I knew that he'd not see the end of February. This is really hard information to keep to oneself. Yet again, my suspicions were confirmed the following Monday when they went back to the doctor. His prognosis was moved up to "days, maybe weeks". The doctor insisted on Hospice, and they finally agreed.

It's almost as if once he found out that he was dying, he let go. He lost his will.

We saw him again on Saturday and I knew he'd be gone within days.

Again, I was right. Today was the day.

So, all this time, unless asked, I never shared what I knew with my husband or his father (or step-mother), but I did share with my husband's mother. I shared all of it with her. There were days that we wrote email to each other at least twice a day. It's been so wonderful to have her there to listen to me and assure me that I was doing the right things for my husband. I needed to hear that from someone who knows and loves my husband and who also still loves his father that I was taking care of him in the best way possible.

I also had *my* Hospice services (the organization I volunteer for) to help me with advice during a few sticky situations. I felt as if I was way over my head at times because I had to witness all of this going on around me and not say anything. They helped me by practicing conversations with me, they gave me ways that I could say things and not offend or change people's realities.

So, now that I've cleaned the house from top to bottom and I've thrown all of this out onto my blog, I feel helpless. I'm not *doing*.

And my husband is alone.

Our company has changed insurance carriers, and my current doctor is not one of the approved physicians. Since I have a liver disorder, it's important that I have a good doctor that understands the importance of regular CT scans, ultrasounds and blood work.

So, I'm doing a meet and greet with a new doctor on Wednesday. They have a website, so I decided to look up his bio. In it, I read, "I believe it is important that we take care of ourselves through fitness and healthy eating. I enjoy discussing exercise with my patients.... "



I liked my old doctor. She was chubby too, and realized that I have a mirror and a brain and know that I should lose weight and exercise. I have a feeling I'm gonna get lectured. Gah!!!

When I read that bio, I was reminded of a Hospice patient of mine. Toward the end, she was rarely awake. I sat in the room with her while her husband was out running errands. Toward the end, she was very disoriented when she'd wake up and would have very few lucid moments. That is what makes this story so funny.

The ONE lucid moment she had was when she decided to give me diet tips. It went something like this:

An hour of snore snore, mumble mumble, then she looked at me and very clearly said , "Dear, maybe if you used a little less salt, that might take care of the weight problem. Or, maybe eat less meat". snore snore, mumble mumble.

I still giggle thinking about it.