Handle With Care

It hasn’t been easy putting my thoughts on paper.  I thought I was better able to handle  end of life care, palliative care, DNR and stuff like that.  But when doctors ask me (and my siblings) at the hospital “Does your dad understand what Do Not Resuscitate mean?  Have you looked into palliative care? Does your dad prefer to die at home or at a hospice?”

I thought with my dad at home, we could manage the visits from the various people (everyone from nurse to social worker).   But they just tell my sister they are coming over.  The house is just an extension of the hospital.  I guess surprise visits are part of the routine.  It doesn’t matter that my sister has to stop work for an hour or two to deal with them.  So she now bears the brunt of the questions.   They insist on asking my dad questions about end of life care.  I wish they would just f*ck off.  While dad knows he doesn’t have years left, I don’t want him to think he only has days to live.  In his current mental state, I don’t know how he’ll react.

Recently we got word that my favorite aunt passed away.  My siblings and I have different views on whether or not dad needs to know and what to tell him.  It hasn’t created a rift or anything like that.  I told them if he ask, I’ll tell him that she passed away.  I was the one that told him at the hospital about signing consent forms for applying to a hospice / palliative care centre and that the entire program of living at home is part of the hospital’s palliative care.  He paused and listened attentively.  I tried to keep it as simple as possible.  It seemed to work. He asked a few questions and was fine with it.  I think he was just glad to be going home.

I’m going to miss my aunt.  I spoke to her before she started her chemo.  Then everything fell apart.  She never made it back home.  I’m just glad she’s no longer in pain.

If you read this far down, you must be made of stern stuff.  I know a lot of my  recent entries have not been easy to read or even comment.  A blogger who I respect wrote that he was at a lost for words and felt helpless reading my recent entries.  But he wanted me to know he still read them even though he didn’t leave any comments.  I thanked him, not just for his honesty but for making the journey in life a bit more bearable.

I don’t know how to close this messy entry.  I know I’ll be fine and make it through this.  I’ve been down this road before.

 

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14 thoughts on “Handle With Care

  1. I hope you and your sister have the strength to deal with this situation. It will be a difficult road ahead, but I like to think it will make you stronger. My thoughts are with you.

  2. You are so nice to your dad. You are making it better. I wish people in healthcare and end of life legal could retain some humanity.

    • One of the doctors in the hospital told me that it is difficult for a lot of healthcare professionals to deal with death and to talk about death. They gloss over it when discussing it with patients or just turn cold. But they don’t realize there’s someone on the other side who are very vulnerable and scared.

      Thank you for the kind words. I try to read up a bit on this but a lot of it is just gut feel.

  3. i think this time that you are going through is difficult, for anyone and everyone. i had been exposed to palliative care and hospice in the hospital setting, but then when it came time for my mother in law to be transitioned to hospice, it was like learning everything for the first time.

    we found some of the hospice staff, in person or on the phone, were more helpful than others. have you tried expressing to the hospice staff that the visits are too frequent and your dad would like to be visited less? if most of his needs are being met and he appears to be comfortable, then i don’t see why thy would need to come more often than necessary (unless they have certain rules/laws that they have to visit your dad once every other week or something like that).

    and i’m sorry to hear about your aunt. my condolences.

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