Advocate for your family members

[UGoLong]

I am having a dilemma and was wondering if anyone out there has figured out a way to deal with it mentally:

 

As a PA, I am not the PCP (or even the consultant) for my family members but, as my father's eldest son, I am his advocate. I go to appointments, shepherd him through the process, hold up some of his meds for a day or two if there is a problem, buttonhole providers for referrals, and so forth. I did the same for my mother before she passed away. And I get lots of calls from my kids, etc.

 

Sooner or later, a family member is going to pass on, like my Mom did. At the end of her life, the rest of the family looked to me for advice and I gave it, understanding my Mom's wishes, as well as the medical realities.

 

The problem is, sooner or later everyone dies and it's hard not to take on some of the "blame" for that. From the logical viewpoint, I know it's not my "fault," but still I know that at the emotional level, I will always wonder. If I took a less-active role, I'd probably feel badly that I hadn't gotten more involved. Still, one of these days my Dad is going to pass (he's relatively healthy, but pushing 96), and I wonder just how I'm going to feel about it when it happens.

 

I'd be interested in any perspectives anyone has to share.

 

Thanks.

[Guest Paula]

My father passed away in October 2015.  I was the navigator for him and my Mom for the 6 months before he passed.  My family looked to me to make decisions or make recommendations of what to do.  When I visited my parents in April 2015 it was apparent to me that he could no longer be safely cared for at home by my Mom.  I had him admitted to the hospital and then the nursing home.  It was a shock to my Mom and Dad was not really totally aware of all that was going on.

 

All of my sisters  and brothers agreed with the decision to get him in the nursing home.   I have no regrets about taking charge of my parent's lives at that point even though my parents were convinced Dad could stay at home.

 

In the end, two days before he died, the nurse at the nursing home called me and told me Dad announced to everyone  "I am done eating".  She suggested Hospice and I agreed .  I waited for his physician to call me and heard not a word.  Two nights later Dad died.  He imposed his own hospice on himself.

 

My only regret is that I did not think about asking for Hospice or palliative care from the very beginning of his hospital stay and then nursing home stay.  I do not know why I didn't think of it, perhaps a bit of hope that he truly would get better and go home.  Why didn't the physician talk to our family about Hospice or palliative care?  Up until 1 week before he died they were still drawing blood (WBC's in the 200,000 range, with anemia) and a cholesterol panel, metabolic panel, thyroid were also done.  Why?  Because he was not on hospice or palliative care. He shriveled away to nothing, a mere skeleton of himself, a painful experience for all of us.  There was nothing more to be done to improve his condition, except transfusions.

 

I live 9 hours away from my parents, my other siblings all live a days travel by plane.  Perhaps if I could have had face to face conversations with his physician things would have been different and I would have asked to stop the blood draws, transfusions, etc.  

 

I appreciate the nurse who finally said, we need to start hospice.  I fault the physician for not calling ever to discuss his condition the last 6 months of his life, so in that way, I failed my father.  HIs oncologist did not call us either, in spite of the fact we had placed calls to his office, with only an e-com reply through a nurse.

 

It made me realize how awful it is to communicate with medical providers, me included, as I hate answering my patients questions directly, when I can delegate it to my MA. 

 

In the end, when my Mom is ready for nursing home, or to live with me or a sibling, we will probably be better navigators and advocates for her.  I know more now, and will ask more questions.  My siblings and I have monthly email conversations about Mom and her declining memory and health, and how we will handle her end of life issues. 

 

It's hard. 

[sas5814]

What you are doing is being a wonderful caring child to a parent that needs your help. Caring for someone's end of life needs and death and doing it well is just as important as seeing to their health and well being during their life. Not many people can do it well and many more simply aren't willing to. Spend some time reflecting on the importance of what you are doing and even seek out some approbation from people whose opinions you value.

 

My opinion doesn't amount to a hill of beans but I think what you are doing is wonderful.I spent some years doing nursing home, hospice, and end of life care and I have seen it done wrong just about every imaginable way. More often I see a dying patient ignored by people who should be close. Keep up the great work!