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After a Year a Question about Hospice 
Started by Mark99
22 Jun 2012, 3:24 PM

It will be a year August 7 that Donna, my wife of 29+ years, passed away at MJHS Hospice in NYC. It was somewhat of a fast process from her admission on July 11 to have a thoracentesis performed which did not work to being moved to hospice July 18th. This past year has been one of discovery and extreme emotions ranging from ideation to joy in knowing that I have learned so much both during our marriage to the time following her death. But from the time of her dx 2 1/2 years earlier we both knew this story did not have a happy ending. Both of us work in an allied medical area so we are not afraid of physicians or medicine. So we marched head first into this hell and were blessed to have an oncologist who was clinically brilliant but understood our humanity. He guided us to Aug 7 with dignity and strength. 

That being said and Donna and I being who we were, a kind of take no prisoners people there was never an outright discussion of palliation until July 15 and it was extremely emotional and the uptake was poor. And hospice was like a pickup game of basketball. We learned as we went. Again we were blessed because karpus 4 and MJHS were clinically superior and I took charge of her care. So in 20/20 hindsight it was an amazingly supportive and caring experience for BOTH of us. And as an aside anyone who I've met who has been in hospice has felt blessed by the experience. 

 My question to anyone reading this is: Do you wish you had had a discussion about palliation and hospice sooner? Would it have improved your experience? 

 

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Reply by Cath1
22 Jun 2012, 8:09 PM
Hi Mark99:

Welcome to Virtual Hospice. Your story is one I'm sure others will relate and respond to even if only to parts of your experience, as do I. While I have been divorced for many years and live independently, I certainly empathize with how you feel about the loss of your wife. You were partners for such a long time and her illness did not afford either of you the luxury of time to prepare much for her final parting. So very sad, and yet you seem to be managing very well considering your grief. Now that you have found us here in this forum, I trust you will realize that you need not feel alone in your sorrow as you learn to live on without your wife, Donna.

My mother, Martha died at the end of December 2010 and she became ill on a Monday and died in hospital the following Sunday. It was the hardest week of her life and mine. We did have the benefit of some invaluable assistance from a palliative doctor in my Mom's last three or four days of life. I wish, looking back, I had known about palliative care and the options available to my Mom, but the fact is that by the time I truly accepted that my Mom was indeed going to die there was only a couple of days left.

I don't know if it is that we had so little time to work on accepting her death that left me feeling so ill-prepared, as perhaps a long drawn out illness would have even been harder to bear witness to, and no doubt much harder on my my Mom in the end. I guess none of us have much if any control over the time death shows up as it sometimes comes suddenly without warning and sometimes it hovers nearby like our inescapable shadow for a painfully long time. No matter when or how it arroves, death is difficult to accept - at least it is for me - but I firmly believe that the force of its impact can be softened with the right kind of care and support, such as palliative care and hospice where available and appropriate.

Like you, for the most part, the support our family received from the doctors and nurses was amazing and shall never be forgotten. What a gift for my mother and our family that lives on in my memory. It is so important to feel welcome and safe to ask questions, to cry and feel the strength of a caring embrace when one's vulnerability cannot be disguised. Luckily, after having spent four days in the emergency dept., my Mom was given a bed in a ward where the doctors and nurses had known her for years so she and our family felt quite at home and at peace in that familiar setting. Her last breathe was so painfully beautiful to witness that it literally took my breath away.

I know others here will read between the lines of your story as I do and will join me in offering you the support you will need as you approach the milestone of the 1st anniversary of your dear, Donna's death. For me the hardest milestone was my mother's birthday, but I got through it and I'm doing very well, as I hope you will as well, in time. I'm so glad you have joined our online family community!:-)

With affection,
-hugs-
Cath1 
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Reply by Tian
23 Jun 2012, 2:06 AM

Dear Mark99

First of all, my condolences on the passing of your wife. I have not had an experience like yours but I am a volunteer in a palliative care ward and coincidentally have a background in medical related research. So for what it's worth, here's my opinion. I think you should have no regrets about the path you pursued. After all, you did all you could to stave off the disease and were guided by a sympathetic oncologist. If all that didn't happen THEN you'd have cause to regret (yet not necessarily justified.) And if your hospice experience was ultimately amazing it's hard to see how had it been smoother it would have made much of a difference. It's easy to play the WHAT IF game especially considering the critical situation you just lived through. In your case it does no good. You did all you could to help your wife and she passed away peacefully. What more can a spouse do? From my hospice experience I see that the quality of time counts more than the quantity.

And Mark, thank you for sharing your experience with Merverlous. Best Wishes.

Tian
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Reply by Mark99
23 Jun 2012, 2:27 AM

Tian: That is interesting what you see in my post: regrets. I have steadfastly refused to have any. Donna, who was the strongest woman I know and smartest lived her life by her rules. In the corporate world it did not serve her well but that is a story for another time. She for the first time in our marriage turned her cancer and care over to me, to someone else. That was amazing to see and an honor to share.

In my eulogy I said "Courage is not the absence of fear but the presence of dignity in the face of fear" Donna retained her dignity even when she lost her hair to whole brain radiation and the last weeks in hospice And any criticism I have of the hospice is with management and in take not clinical care, which was superior.  

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Reply by Mark99
23 Jun 2012, 2:29 AM
Cath1: Thank you for your comment. I will have a more fitting response later this weekend. 

 
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Reply by Tian
23 Jun 2012, 2:53 AM
Hi Mark99

I'm sorry that I didn't make myself clear. I do not see you expressing regrets in your post. I just wanted to affirm that I don't see anything wrong with your actions and that you shouldn't have any regrets. And specifically in answer to your question, from what you say and my experience I think an earlier discussion of palliation would not have had a huge impact.
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Reply by GirlWithTheBlackBeret
25 Jun 2012, 3:01 PM

Hi Mark99,


My thoughts are with you as you mourn your wife.


I lost my mom to cancer a few years ago. I helped mom realize her last wish, which was to die at home. We were able to get lots of palliative support from the healthcare system here. I agree with Cath1 who so eloquently, said the death of a loved is softened by the wonderful care by palliative care staff.


With regard to discussing palliation earlier in her diagnosis… I’m not sure, if I would have been open to learning about it at the time.

 

We did not realize how bad her prognosis was and the doctors told us they would treat with chemo to try to fight the disease. I did not know to ask about the staging of her disease but I now know that her case was palliative from the start. At the time, we were focused staying positive and fighting the disease, wanting her to beat it.

 


Like Donna, my mom’s progression from active treatment to palliative care was fairly swift. Her case worker nurse, realized very quickly that we were going to need palliative support so she gave us a pretty thorough briefing.  Prior to this briefing, I thought this nurse was abrasive and unfeeling based our past interactions. It was not until she had the palliative talk with my sister and I that she shared her own story. She had lost her husband in his early 40’s to cancer. Something she said to us that day about her experience resonated with us. She said if her husband wasn’t going to be able to live, she had to give him the best possible death through palliative care services. So, giving my mom the “best possible death” was our new mission.


Yes, that briefing was a touch overwhelming but if that nurse had tried to give it to me one or two months before, I think I would have told her off. At that time, I was in denial that my mom was “that” sick.

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Reply by Tian
25 Jun 2012, 7:48 PM
GirlWithTheBlackBeret, in my response to Mark99 I didn't allow for raising palliative care earlier might be a negative so thank you very much for bringing that to light. Your goal of giving your mom the best possible death sounds entirely appropriate to me. 
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Reply by GirlWithTheBlackBeret
26 Jun 2012, 11:56 AM
Yes, denial was my friend back then, it helped me cope. I did not want to even think about the possiblity that my mom might die. I did not know to ask the oncologist about the stage of cancer my mom was diagnosed with. A few months later when we were told that there was nothing more they could do for her, that denial bubble burst.
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Reply by Mark99
26 Jun 2012, 4:08 PM
This discussion has been important to me on a few levels. One it has allowed me to share with others who have been through similar experiences and reflect upon their and my feelings and reflections. On another level I hope I am adding to the collective knowledge and experiences of others in some beneficial fashion. And finally I am considering an idea that may help many many more recognize and realize the value of palliation for both the patient and the caregiver. 
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