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Father moved into hospice too soon? 
Started by L.
16 Apr 2023, 6:22 PM

I had to move my dad to hospice it was the worst day of my life and more are to come. It's a very depressing place. When I brought him there, there was nobody to meet myself my dad and my mom. I was told verbally that he has one month by the pallative clinician when he was assessed but all the paper work indicated 3 to 6 months. He has late stage kidney disease.  My mom has some complex mental health issues and can not care for my dad. My parents were living in assisted living together. I have been assisting both my parents alone taking them to all their appoiments my brother lives 8 hours away. My brother came home for 10 days after living abroad and was furious. He told me that our dad should not have been moved. My dad has been doing well. Still a very low weight but eating a bit. My brother destroyed my self esteem and the emotions are too much for me. I am now doubting my ability to assist my parents. My brother has left and will be returning in two weeks. I am feel so overwhelmed and l am riddled with guilt. I told my brother that he needs t take the reigns. My tank is empty and the thought of making further mistakes with my parents care is terrifying. This experience has damaged my relationship with my brother. My dad's family keep asking questions and I have no answers. If my dad survives hospice I have no idea what is next the longterm care facilty next to my dad is not suitable according to my brother. The sheer number of patients dying around my dad in hospice is affecting his mental health. I am completely overwhelmed. Sorry for the typos using my phone. Lastly I have no family to assist as they all live back east along with my parents friends. I feel so alone.
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Reply by Elena
17 Apr 2023, 2:55 PM

Hi L. I had to do the same thing a month ago. My dad suffered from copd for many years and was diagnosed with lung and liver cancer in January. After 2 sessions of chemo his lungs gave out. The doctors told me that they could not do anything. He suffered as he could not breathe anymore. He also could not eat the last 2 weeks and not drink water either because his muscles in is throa were not working anymore. I suspect it was the tumourS in his lungs pressing on his isophagus. the doct never gave me a clear answer as on why he couldn't swallow anymore. All his saliva was slowly seepin to his airway which caused more fluid buildup.As I was told that I had to move him in hospice it was also the worst day of my life. I could not bring mys to tell him that that was it. I told my dad that he finished his antibiotics and we were moving rooms so he could recover from his pneumonia. 2 days after I had to make the decision and asked the doctors to give him something so he would not feel the inability of not being able to breathe so they put him on morphine drip. Once they did I held his hand and told him everything. I told him that he fought his best fight, that it was ok for him to go... I made him promise that he would watch over me and asked him to hug me. and he did, although he couldn't speak to me anymore, he gave me the sweetest hug. That night the nurses increased the dose to 4mg per hour. I knew that the end was near. It was horrible not being able to to NOTHING!! So I talked to him, I massagEd his feet which he loved and a played a few of his favourite songs. At 3 am on March 21 I lost him. I was holding his hand through the night when it happened. I still can't believe he is gone. I am not doing well and never will be ok with the whole situation. its very soon I know but it feels so unfair the way he passed. I still have guilt for putting him on the morphine but I could not bare watching him struggling to breathe and the panic on his face will haunt me forever. I love him so much it hurts. Everyday I cry and think over the decisionS I made. Maybe I missed something? Maybe I should have taken him to a different hospital? So many ifs. I hope things work out for you. I hope your dad gets better. My thoughts are with you.
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Reply by eKIM
17 Apr 2023, 9:38 PM

This is in response to both “L” and Elana.  Being a dad of two daughters, my heart goes out to both of you.  I send you a big “Virtual Hug”.


I have been a hospice volunteer since 2010.  I spent 10 years volunteering in a residential hospice and for the last 3 years I have been volunteering as a Peer Support Grief and Bereavement volunteer.


The average stay at our hospice is 14 days.  Some it is much shorter.  However, I must say that practically every family member and the patient themselves appreciated the outstanding care they received.


On the other hand, I have talked to so many people who did not have hospice care available for their loved one, found it to be way more difficult on the family and their loved one suffered a lot when they didn’t need to.


An example of this is when someone is struggling to breathe or has great pain.  This, combined with the fear of dying in agony is very hard to bear.  The medical staff (they do this all the time), increase the morphine so that the person does not suffer and has a peaceful death. 


This is exactly the procedure that they did for my sister-in-law when she was in hospice.  It was definitely the most humane thing to do and as a family, we took comfort in that.


Peace.  Isn’t this what we all hope for when we die?


Families who make this choice have their grief to deal with of course, but for most, there is no guilt.  They made the best choices under the worst conditions.  And importantly, they minimized the suffering of their loved one.


As far as the ongoing issues that you describe that you are dealing with, it is not possible for me or any of our volunteers on this site to do anything.  We are not professional therapists.  You might want to seek out help locally.


What we can do, however, is to be good listeners.  Oftentimes, telling one’s story (even over and over again) to a compassionate listener can be very therapeutic.


We are here for you.  Come back and post again. 

As long as you find someone who cares, you are never alone.  We care.


-        eKim

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29 May 2023, 9:03 PM

Dear Elena and L,
I am sorry I have not responded sooner. Reading through your posts I was wondering how you are both doing now. I know eKIM has as always provided words to comfort and support.  Have there been people or support groups that have helped?

L, how is your father now? I am sorry that you have found the hospice a depressing place. That must make it hard to go home.

Elena, I would not try and 'make you feel better' about the morphine, but I wondered if this short article written by the Canadian Virtual Hospice team might be helpful for you to read. Medications

I know that many things might have changed since you posted on this forum. Please know that these suggestions for reading support are just that suggestions. 

Grieving before the loss, Making sense of intense emotions, and one last one, When your parent has died.  

Kind regards,
Katherine
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