Beautiful Awful Hospice

I had to take a break today; just a walk around the neighborhood.  I passed by a field of flowers encircled by a barbed wire fence.  That’s what hospice feels like.  You know that peace is waiting for your loved one, it’s just within vision, but they must first pass through the barbed wire hell that is cancer.

We are luckier than most.  We have this time to say goodbye and I love you.

Thoughts on Hospice

1. Not everyone is given advanced notice of their demise, so realize what a gift this is for you and your family.  Use it wisely.  Ask what you need to ask.  Say what you need to say.
2. Your loved one is in the driver seat.  My mother had very specific paperwork stating she wanted hospice and did not want to be resuscitated…until she had a blood clot in her lung.  At that point she said, “Take me to the hospital – I want to live!” A few days into her hospital stay she changed her mind back.  Don’t try to argue with your loved one, it will only make you feel guilty.  It’s her life, so let her live it.
3. Make this time peaceful.

   

   My mother loves Frank Sinatra, so we’re playing his Greatest Hits.  We are looking at old photos, sharing memories, holding her hand and saying I love you.

4. Whatever you’re feeling is ok.  You’re not a statue.  Life is messy and so are emotions.  It’s ok to cry.  It’s ok to laugh too.  When my mom was lying down in the ICU (on very heavy painkillers) the doctor was talking to me directly, as though my mother wasn’t there.  The doctor said, rather brusquely, that there was no hope of treating blood clots combined with cancer and Mom should go to hospice.  My mother answered by lifting her swollen leg straight up in the air, then tried to sit up and take off her medical gown.  “I think that’s a no,” I said to the doctor.

   

   Also, my kids always like to tell jokes, so I let them.  We will cry when she’s passed, so let’s laugh a little while she’s here.

5. Paperwork and passwords.  A) Get your loved one’s user names and passwords on one single sheet.  B) I thought my mother had absolutely everything in order, as we had met with financial planners and lawyers last summer after her initial diagnosis.  This week when I went to deal with some financial issues the bank said that she did not, in fact, have everything in order.  Thank God my friend, Regina, was able to fix it, but who wants to deal with bankers on a good day, let alone on the day you’re told your mother has no more medical options?  I guess if we had it to do over we would have gotten a second legal opinion or some sort of sign off from the bank that everything was set up properly the first time.
6. “You have to take care of yourself” Ha, ha, ha.  Doctors, nurses and the ladies of hospice made it a point to tell me that I had to take care of myself.  As a fitness blogger, my typical release is to exercise, but I don’t feel right leaving to go to a gym, so I cancelled everything fitness-related for now.  I also started eating chocolate and other comfort foods at alarming speeds.  Note: This is the same thing I did last summer when Mom was diagnosed with cancer and I went from size 1 to size 7 in four months.

   

   My mom saw me eating a candy bar and said, “You just won a bikini competition.  Why would you eat that crap?”  She has a point.  So this week my comfort foods have been sweet potato pancakes, Greek yogurt and my usual turkey and green beans.  To be sure, I’m also eating the occasional grilled cheese, but I’m trying to keep myself nourished. Also, I’m taking some walks.  It’s better than nothing.

   

7. Ask for help, or Accept Help when it is offered.  I hate asking for help.  In the back of my mind I feel like I should be Super Woman.  My friends know better.  My one friend, Amy, works in the medical field and was able to help me find a good hospice.  My friend, Regina, is a lawyer and is able to help me out with paperwork. My friends Deirdre, Jenny, Meghan and Obidia give me moral support.  And my husband and brother have been helping with chores so I can focus on my mother.
8. Get the important people there.

   

   Remember when I wrote my mom was adamant that she didn’t want to go into hospice?  It’s because she was waiting for my brother to come.  If your loved one is going into hospice, don’t delay – get on the plane.  Appointments can be rescheduled.  Most jobs will understand and in some cases you may qualify for the Family Leave Act.  You might feel bad for having left your co-workers in a bind but how much worse would you feel if you missed your mother’s last breath?

9. Be honest.  You know when something’s not right with your body and so does your loved one.  The other day there was blood in Mom’s urine.  I dumped it quickly and didn’t say anything to her, so as to not worry her.  The next time she went she asked, “Was there blood in there again?” “I didn’t think you saw that,” I said.  “I have cancer, I’m not blind.”  Sometimes honesty also includes stating reality without an optimistic filter.  When my mom said, “it’s awful being me,” I could have disagreed and mentioned all the positive things in her life, but instead I said, “it is awful what you’re going through right now and I’m so sorry you’re in pain.”  Sometimes truth makes the other person’s feelings validated.
10. Calm your children.

    

    Death is confusing and scary for adults and can be even more so for children.  We told our kids that Grandma is very sick and will probably die soon, but that we were healthy and would keep them safe. I told my daughter, “You will see me cry, because I’m going to miss Grandma, but she will be at peace.

When your loved one is in hospice, it is awful and beautiful too.  Looking through those photos, it reminds me that she led a beautiful life.  I hope that when my day comes I will also be able to say that I’m not afraid to die because I was never afraid to live either.

Lisa

 

 

Lisa Traugott is a Mom’s Choice Award winning writer, fitness blogger, wife and mom of two.  Her book, “She’s Losing It!” is available at Amazon.com.

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