Giving permission–the final gift

As November is coming to an end, so is Hospice and Palliative Care month along with Caregiver month. I have another topic that I want to touch on. Giving permission. That may seem like something simple, but in reality is something that we don’t do nearly enough.

Many of you have probably heard it said that you need to give your loved ones permission to die. It is absolutely true. I have had numerous patients clinging to life by a thread. Until they were given permission by everybody close to them, they would not pass on. A lot of people also will wait for someone. Sometimes they are waiting on a child to come home, which was the case with my Grandfather. When his last son came home and said goodbye, he passed away the next morning.

One of my ICU patients could have passed at any moment. He was unresponsive and I had told him numerous times throughout my shift that it was okay to go. However his family was all standing at the foot of his bed and hadn’t said a word to him. After telling them the importance of saying goodbye and giving permission, each one of them went to the head of the bed. One at a time they held his hand, gave him a kiss, said their goodbyes and most important GAVE PERMISSION. They said that they would be okay once he was gone. They still would love him with all of their hearts’.

Within sixty seconds, I noticed a change on the monitor. He was starting to have pauses between heartbeats. Short ones at first and then longer. At the two-minute mark…nothing. He had passed away. He had been given the permission that he needed. That was one of the most poignant deaths that I have seen.

Most recently, actually last week, I was able to see a very good friend of mine. She had ovarian cancer and was terminal. I knew it would be my only chance to see her before she passed. Each time we had talked over the last few months, I could tell that she was progressing. She was also a nurse–actually became one because of my Grandmother. When I called her last week, my heart sunk when I heard her voice. I knew she wasn’t going to make it much longer.

As she was sitting in her chair talking to family and friends, she never let go of my hand. When everyone had left, we were able to talk candidly. I asked if she had considered hospice yet, she replied she had thought about it, but nobody had brought it up. My gut was telling me that she had days. We talked about that it was a hard decision to stay and that is was an equally hard decision to go. Quality of life was a priority. We talked about that she would have a wealth of people waiting for her on the other side, including my Mother. I told her to give my Mom a hug and say hi when she got up there and that I would see her again soon enough.

With tears in my eyes when I gave her a final hug and said goodbye, there was a peacefulness that washed over her. It wasn’t there when I showed up. I had given her permission and brought up something that nobody else had. I wasn’t doing it because I’m a nurse, I did it because I was her friend. We spoke on the phone Saturday night and she said that she was trying to figure out if it was worth trying to keep fighting. I told her that I loved her and also said that I thought it was time for her to let go…she died the next night.

The power of permission is beyond measure. It is beyond anything that medicine can do. It is something that we all need to remember and not be afraid of. It is empowering to those we give it to.

To some death seems like a cut and dry process. To anyone that has been involved with patients, parents, family members or friends, we know that this process is so complex and emotional for everyone involved.

There is a stigma that seems to hang around death. It seems that once the funeral is over, then suddenly society expects that grief should also end. That is most definitely not the case. Grief continues for years. It changes form, it lessens, but I don’t know if it ever truly ceases. We learn to incorporate it into our lives. But, it is always brought back to the surface with the holiday season, birthdays, anniversaries and a litany of other dates that bring back treasured memories. That is how we cope. It means that we truly love someone and they will always live in our heart. It’s okay to grieve, just as it is okay to give permission.

You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp. –Anne Lamott



Where my demons hide

I saw a new autonomic specialist the beginning of May. Work began on this post before I had the appointment, because I was waiting to get told the same things we already knew. “This is a really rare condition and all we can do is symptom management; we can’t reverse the damage that’s been done.” I’ve already faced those demons several times and have grieved each time, knowing that life is never going to be what it was before. However, I was forced to face them again. The feeling in the pit of my stomach, that something was much more serious, proved to be true. I cried for days before the appointment in the solitude of the comforting walls of our house. It’s called anticipatory grieving and nails it on the head.

When the dreaded day came, I didn’t even want to go in for the appointment. I finally broke down and told my husband about my fears. Being a mechanic, he needs something concrete for an answer. He fixes things for a living, but the one thing he loves the most, he can’t fix at all. He coaxed me out of the car and tightly held my hand as if he was willing courage into my heart.

The appointment lasted 90 minutes and the doctor was never rushed. It was probably the best appointment that we’ve ever had. Those fears I had about this monster taking over my body and the resulting sequelae, well my gut feeling was correct…again. Our doctor is fairly sure he can put an official name to this. Although this is autonomic, it is not a neuropathy, as we had believed for over three years. It is a central autonomic disorder, which increases the fear factor and seriousness. He also believes that I was born with a mitochondrial disease and that is now attacking my brainstem.

As of now, we are back in the testing and consult phase. It feels like we are starting the entire diagnostic process again; the difference being that this time there is no going backwards. It’s just going from bad to worse. It’s just a matter of how bad.

So, I’m facing my demons again and the grieving is in full swing. The unknown is so hard to face. I had made peace with the fact that we sort of had a name, were attempting to treat symptoms, and knew that it was progressing. It was kind of like just floating in mid-air. I was okay with that. Things are different now; the grief process has reset, yet again. These diseases of ours, no matter if they are physical or mental; they all have a large emotional toll that we don’t want to admit to…I know that I don’t want to admit it.

I want to be me, the old me, the me I was three and a half years ago, before my life changed in a matter of days. I’m tired of being home every day. 1273 days of attempting to accept this new normal but yearning and dreaming each day of who we used to be.

So, I’m declaring war on my demons. Well, I think I am. Even the best laid plans have kinks in them…
demons hide


The things you thought you knew

I woke up this morning to a text message saying that a good friend of mine who coached basketball for many years in our community had passed away. He wasn't even 60. I've been sitting in disbelief today and have been reflecting upon the things we take for granted.

One of my high school classmates and best friends is sitting in an intensive care unit waiting for a new heart. He almost died Friday night. He's 32

Those things we take for granted, like knowing that a friend is always going to be on the other end of the phone, knowing that when you go home you will see a person, just knowing… But what about when all that changes? What about when those moments become memories?

The power of a moment, a second, a chance encounter. Tonight when you kiss your spouse goodnight and tuck your children in, take an extra moment to take it all in. What if we didn't have these things? Take advantage of every inkling of time. These moments all go into the history books. What moments would be memories in your book?

I've had a lot of losses in my life, especially in the last couple years. Each one strikes you differently, each one feels like a piece of you has been lost. But the reality is that all of the memories, love, voices, smells, laughter, and everything else actually lives on in our hearts. Our hearts feel the loss for a long time and during that time the memories are stored and become a part of who we are. We change with each loss.

I've changed today. My heart is remolding again. The history book has more memories added to it and each one I think of goes into that book. Today the book has become more vibrant; filled with laughter, crazy hair, and Hawaiian shirts. That's the way our books should be…colorful, fun, and filled with good memories.