Monday, May 18, 2009

Mama and the Hospice Experience


Welcome to Service – The Action Form of Love

This week, I’m blogging about something many of us may never encounter. Frankly, until fairly recently, I didn’t think I’d get close enough to this program to really get to understand it.

I thought I would be lucky or blessed if our paths never crossed.

This week, I’m blogging about hospice.

You see, until about nine months ago, I thought hospice was only for people with a terminal illness. I presumed their function was to ease the sufferer’s pain and gently guide them from the transition from mortality to eternity.

Sometime around summer of 2008, my parents told me that mama’s doctor had set her up on in-home hospice. My initial reaction was one of alarm.

Why did mom need hospice, I asked? She wasn’t exactly healthy, but she didn’t have a terminal illness, either. True, she had been nearly homebound for several years, but that was because of her fibromyalgia and post-polio syndrome and age. She didn’t have cancer, had never had a stroke or a heart attack. I was flabbergasted that Dr. Jack would assign a hospice team to her.

Rachel, the hospice nurse, was a very kind, compassionate young lady. She was always gentle with mama and very understanding of all the questions my dad tossed at her. The one thing all of us wanted to know was why?

Why hospice? Why now?

To their credit, the doctor and Rachel patiently explained to us that hospice is not just a program for those expected to die right away. It’s also to help ensure people like mama are in a safe, secure and healthy environment.

Hospice doesn’t just help people die; it also to help people live.

Besides Rachel coming over and helping dad manage mama’s daily medications, there were others who came and helped her in other ways. One sweet young lady came three times a week to help mama get in and out of the shower. Others cooked and planned meals and helped with her physical therapy exercises.

According to the medical professionals who cared for mom, there are two phases to hospice care. The care mama received last year was the first phase – the phase that helped both my parents have a better quality of life.

The other phase, the part where hospice helps patient and family prepare for, accept and endure the death of their loved one came later for us.

Sometime just before Thanksgiving, 2008, dad called me on the phone. While we chatted he mentioned that, due to the family members enduring various financial difficulties, he was thinking of cancelling the family Christmas party. I told him I would go along with whatever the rest of the family decided. Later, he told me that mama had gotten quite upset with him.

He said that she heard him talking to me and my other siblings about not having the party and she burst into tears. When he asked what the matter was, she told him we had to have the Christmas party because this would likely be her last with us.

Now, I don’t know about you, and I’ll not try and make you believe as I do. But, I believe mama knew. She knew her time was at hand to shuffle off her mortal coil and join her other family members on the other side of the veil.

Two months later, in January of this year, I had forgotten all about that conversation. I kept feeling my cellphone vibrate in its holster. Ordinarily, I don’t answer my cell at work but the vibrating was so persistent I finally took a break to see who was trying to reach me.

It was my family.

Three siblings had been trying to call and text message me all day. When I finally called them back, I learned that mama was in the hospital, and they suspected a heart attack. They had run some tests that night and would have the results in the morning.

I was told that she should be okay, she looked and felt better, but they were keeping her overnight, just in case.

By the next day, things had taken a dramatic turn. Although it was confirmed that mama hadn’t suffered a heart attack, she somehow aspirated and began having a very difficult time breathing.

She had gotten worse, and had been moved to the Intensive Care Unit.

That morning, I called out from work and my wife dropped me off at the hospital front door. I went up to the ICU waiting room and found my siblings and dad sitting in the chairs against the wall. As I walked in, I remember thinking how strange it was to see dad and the kids all in one place, but without mama at his side.

Dad warned me that if I was going to go in and see her to be prepared. She didn’t look much like herself. She had tubes and wires and a respirator.

There wasn’t much more he could have done to warn me, and still it wasn’t enough.

When I went back through the ICU doors, I first went into the wrong room. There was a woman laying in a coma, and I thought, dad was right. That didn’t look like mom at all. A kind nurse came and directed me to the right room, but the sight wasn’t really any better. On the bed was my mama, but she sure didn’t look like her. The lady in the next room actually resembled her more.

Throughout the days my family and I spent there, most of us had the feeling that mama wouldn’t be going home with dad from this hospital trip. Some of us talked about it, but others pushed it back into the recesses of our minds, not wanting to acknowledge it.

From the first morning I was there until the fateful afternoon a week later, mama had been through some ups and downs. Sometimes we took hope that there was something the medical staff could fix, and other times, we thought she would die before the end of the day.

Throughout it all, dad stayed and hoped against hope he would be driving his wife of 61 years back home to recuperate. Though her prognosis indicated it would have taken six or more months just to get her back to the point she was before going to the hospital, dad was willing to make the sacrifice to stay by her side and care for her, even ignoring his own needs in the process.

For most of the day, he would stand at her bedside, crouched over; holding her limp hand while she slept, and while she was awake.

I think of anyone who didn’t want to believe it was the end, it was dad.

A couple of days before she died, my wife and I talked about what mom wanted. Did she want to keep fighting a losing battle, or did she want to just let go and go Home? That day, I went in and had a talk with her.

“Mama,” I said, “do you want to keep fighting?”

She looked at me with such love, I’m choking on tears now just writing about it. She managed a weak smile, and held up a shaky finger and said, “Maybe one more day.”

The next day, she went to sleep, and the nursing staff and chaplain helped dad to know it was time to let her go. I can only imagine how hard that was for him.

We made the decision to pull mama’s life support, and, as family spokesman, it was my responsibility to deliver that directive to mom’s doctor. Though I don’t feel the same way now, at that very moment, when I had to pick up the phone and let the ICU staff know, I felt like an executioner.

It was probably the worst day in my life, and I imagine, the toughest day dad and my siblings had ever experienced. We were sore and fatigued, emotionally, spiritually, mentally and physically. Though we had a full week for a wonderful family reunion, we all agree that it would have been much better under different circumstances.

And then, when our emotions just couldn’t get any rawer, Rachel showed up. While dad had told us he wanted to be with mama when she slipped away, he let Rachel take his place at her bedside.

We were all in the family waiting room when the life support was removed. We were spared having to watch her take her last breath and go Home.

Twenty or so minutes after the tubes, respirator and wires were removed, Rachel joined us in the waiting room. She was crying, and we knew.

She gently knelt down next to dad and told him mama was gone.

We all knew the news was coming. The day before she passed, my siblings and I were eating in the hospital cafeteria when my niece came down with a message from mom. She wanted us to finish our lunch, come back up to her room long enough to say a family prayer, and then she wanted us to close her door and let her go.

Still, knowing it was her time – knowing she was ready to go – it was a heartbreaking event. Not one of us wanted mama to leave, even though she’d spent the past several years in a damaged body with a slightly confused mind. On the other hand, we couldn’t bear the thought of her staying around just because we selfishly wanted our mom to be with us a little longer.

In retrospect, maybe mama knew something long before Thanksgiving. Maybe she told Dr. Jack something she didn’t share with us, and that’s why he ordered hospice. I really don’t have the answer, and it really doesn’t matter.

What does and did matter was that Rachel and the entire hospice team was there.

They were there to help mom and dad live, and they were there to help mom die. Most importantly, Rachel was there when we absolutely needed her the most.

All in all, mama’s death would have been so much harder to deal with if not for hospice.

So, your challenge today:

Find something you can do to help your local hospice team.

Can you donate money? They surely need and deserve every penny they can get.

Can you visit them and find out what they’re all about? Someday someone you love may need their services. I can tell you from our experience it was better to know what they were all about before the time came for mama to pass.

Do you know someone who works for a hospice? How about calling them and just telling them how brave you think they are for what they do?

I’ll leave it up to you and to your imagination to decide how you can serve.

Thank you for reading today’s post. Thank you for being willing to share it with others. Thank you for always remembering that…

Service is The Action Form of Love.

1 comment:

Joyce said...

Thank You for writing such a
heartfelt, insightful and
eloquent piece about your family's
experience with hospice. Knowing
that hospice also helps people
live a quality life while dealing
with health issues as well as
assisting in end of life care
was very helpful.