Monday, November 23, 2015

Four Important Things I’ve Learned about Hospice Care (from experience with my dad, grandma, and both of my in-laws)

This is an original piece of artwork
done some years back by my youngest sister.
Sometimes we are able to get used to the fact someone we love won’t be with us on Earth for much longer, but that still doesn’t necessarily make their passing easy for them or for us.  Other times, death comes suddenly, and is a jarring shock to all involved. 

The truth is we don’t know how long we have left here.  I’ve found honesty and a willingness to be vulnerable go a long way towards connecting with others on a deeper level.  When my dad was in a great deal of pain physically or was struggling in mind or spirit, I wanted him to feel safe enough to tell me that. 

I remember assuring him time and again I’d rather know the truth than have him expend extra energy pretending everything was fine when it wasn’t.  There were days when he was hurting too much to pretend, though he wanted to.  It was difficult seeing my dad so weak and fragile. 

The anguish he experienced pierced my heart as well, because, although I wanted very much to alleviate his suffering, there was only so much I could do.  I took courage in knowing the whole time that my family and I weren’t alone in all of this.  In addition to his doctors and medical professionals, we now had additional experts who were there for my dad as well as our family. 

Fortunately, my dad didn’t lose his sense of humor throughout the whole ordeal.  He referred to his nebulizer as his “peace pipe,” and joked about getting a wig with dreadlocks for when his brothers came to visit. 

He really freaked out the social worker on his hospice team when he asked how much it would cost for him to be cremated.  Given the estimated expense, which if my memory serves me correctly was somewhere in the $1000+ range, my dad suggested we just put him on a huge barbecue spit/grill sort of thing outside of his place once he died and have the Eagles (one of his favorite bands) playing in the background. 

His hospice nurse knew my dad’s twisted sense of humor after just a couple of her weekly visits, but the poor social worker was stopping in to see him for the first time.  She was rather unprepared for such a gruesome proposal.  Alarmed and unsure if she should take him seriously, she had to go back to the office and write a very in-depth report.

My direct experience with hospice care has thus far included each of Kevin’s parents, my father, and maternal grandmother.   These are some helpful things I’ve learned along the way.

1. Ask questions, express concerns, and feel whatever you’re feeling in front of these health care professionals.  This group of people can handle whatever comes up and has probably been through at least some of it before. 

2. If you as a hospice patient or the family member of someone in hospice care are worried that you might no longer qualify for hospice services, talk with your team about these concerns right away.  Under no circumstances should you start rationing your medicine for fear that you will be kicked out of hospice care.  This includes breathing treatments as well as pain medication.  It is too hard on the individual as a patient, the hospice team as well as the family. 

There are many organizations and resources for help with medical costs, including prescriptions.  Part of what the hospice team is helping to do is ensure your comfort and quality of life.  Don’t undermine your health and doctor’s orders by not following the prescribed regimen.   

3. Is it possible to be “kicked out” of hospice care? Yes, sort of.  My maternal grandmother got well enough that she was out of her room playing cards and visiting with people several times in a row when the hospice nurses came to see her, so they figured she probably no longer needed their services.  My grandma, mom, and the nursing staff at Little Sisters of the Poor all agreed on this.  (If you’re going to stop qualifying for hospice care, this is a great way to get out of it in my opinion.)

4. Talk with your family about your impending death.  Caregivers should feel free to ask hospice what signs to look for to know that the end is imminent and near at hand.  Discuss funeral arrangements and burial preferences honestly, openly, and (preferably without unnecessarily flipping out your assigned hospice care social worker and causing them to fill out a whole lot of extra paperwork).
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