Dealing with end stage Parkinson’s disease- the long goodbye: By Dr. De Leon

“..Before the prospect of living less than everyone else, I have decided to live faster, more fully…” Alexander Dumas – la dame aux Camilles


Lately, I have been thinking about this subject quite a bit especially since one of my dearest friends has been diagnosed with terminal disease. For the first time this in my life, I have found myself to be at a loss for words. This is saying a lot for aside from being a physician who has delivered bad news a thousands of times, I have also cared for many loved ones with terminal illness. I think the reason I am having such inner turmoil is because she is my own age with a child who is my daughter’s age aside from being one of my best friends. I am not ready to let go. Especially since only two weeks prior to her diagnosis we had made so many wonderful plans. Of course visiting her at MD Anderson also conjured up a whole host of emotions. The smell and place reminded me of my first patient in this same hospital I had to pronounce dead in front of her family while I was an intern. What made it so difficult at the time was the fact that not only was she Hispanic but died of melanoma which runs in my family plus she was my very own age at the time 26.  My heart breaks even now remembering her and then thinking of my friend.

This situation made me think of everyone dealing with family members and patients themselves who are terminal. How do we deal with them? What do we say? How do we treat them?Image result for image of terminal illness

As far as Parkinson’s is concerned not much literature is available on the subject as some of you have inquired from me recently.

I decided to write some points on the subject. Although Parkinson’s is no longer considered a terminal illness as it was once 30 years ago. The new advents in treatments have greatly improved our quality of life yet; in many parts of the world where medicines are harder to come by it may still be considered a death sentence. Nevertheless, in most cases PD is a long goodbye. Subsequently, we are forced to learn to “live with death” in our lives for an extended period of time. Thus, the ways we deal with death and terminal illness in our society have changed dramatically since a great deal of people live with chronic progressive neurodegenerative illnesses. Unlike the cases when patient died suddenly – the patient him or herself also have to learn to grieve while still alive and fighting to hold on. This can cause a lot of stress in the family particularly because grief is a family matter.

Dealing with our own loss can be difficult enough as I am finding out. Moreover, thinking on how to comfort those experiencing grief first hand can be that much more daunting.

First, for the caregiver.

You might be experiencing trepidation in how to proceed with the relationship once a loved one has entered the end of stage of the disease. Try to remember that your loved one is still the same person even when they have dementia and can no longer communicate. Underneath they still are the ones you love. If they are still lucid try to focus your relationship on one another rather than on the disease. Don’t focus on unsolved issues. Focusing or bringing up these to light is not going to help the relationship any rather make it more challenging. Don’t underestimate the power of your presence. But never try to be a counselor. Be a listener only.

Secondly, the other thing I learned through the years but especially while taking care of my dad. Dyeing is NOT a science. There is no time frame nor right or wrong way to die. I so wanted my dad to talk about his life, what he liked and did not like. Plus wanted any advice, pearls of wisdom he could share with me; but he never could do this for me. I suppose it was too painful for him to express and I too incentive to his feelings being selfish wanting to know more about his life before he passed.

When it comes to dying, some people accept it and come to terms while others may choose to live in denial. Allow them the freedom to choose. Plus denial is a natural self-preservation mechanism because the alternative is too frightening to cope with. As long as the denial is not causing harm it should not be contested. They might be afraid of letting family down, losing control of independence, bodily function etc. Offer spiritual support but as I found out with my loved ones sometimes it is easier for them to seek support outside of the family. Offer to have spiritual counselors come by regularly like ministers, priest etc. My grandma really enjoyed this time even my dad to a certain degree especially when other congregational members came to sing.

Should we keep vigil by their side when time draws near? Get your cues from your loved one. Ask what their desires are. Being near a loved one as they are dying although painful can be a very beautiful sacred experience increasing your inner strength, even though at the time you may feel helpless and powerless. It also allows you to give your loved one permission to die if you sense resistance on their part because something seems to be holding them back. For instance, when my dad was in his last breaths (agonal state) I could sense his hesitation to let go because he was worried about mom. I told him it was ‘ok’ to let go. I emphasized the fact that we loved him very much and would see him soon and that mom was going to be fine with us. He passed away that evening.

But keeping vigil can be emotionally and physically exhausting.

Remember to take care of yourself as well. Take breaks and don’t forget to eat and drink fluids. You don’t want to end up in hospital yourself. You may choose to have love one die at home, hospital, hospice or nursing home. You and loved one should decide ahead of time. Both my dad and grandma wanted to die at home.

Third, is ok to allow yourself to grieve which usually comes in waves of emotions. Sometimes you may start grieving as soon as the end draws near other times may not occur till much later after their passing.

Guilt is a normal real part of grieving. I also experienced feelings of guilt after my grandmother’s passing, questioning if I had done enough. I would second guess my decisions wondering if she might have lived longer if I had kept her under my care the last couple of weeks. Remember that these feelings too shall pass. If the grief or the guilt is not seeming to go away make sure you avail yourself of a professional grief expert to help you heal.

So my advice is:

  • Laugh often
  • Really listen
  • Try to keep life as normal as possible
  • Provide genuine support
  • Make a wish list
  • Help maintain their dignity
  • Provide physical contact as much as possible
  • ask for specific needs which might require assistance

#Unite for Parkinson’s this coming month of April!pdftulip




5 thoughts on “Dealing with end stage Parkinson’s disease- the long goodbye: By Dr. De Leon

  1. Maria, this is the most beautiful and true discussion of going through the death process with a loved one. Having been though it twice left me beaten and in need of someone to talk to . We all want to follow our loved one’s wishes and be there for them, but when you get caught up in the medical processing complex its harder but more important to advocate f or your loved one. And the guilt is there even when you do all you can. Thanks for covering this.

    By the way, one doctor told us that he’d lost both his parents., his dad toparkinson’s which was, he said, “the worst way to go”. Thanks, Doc for that bit of good news.

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