Blindsided by Hospice


Summer 2010, Kinsale. Dad zooms around the house with a walker.


My father is dying.

We’ve known this for a while, but it’s been a long time coming.  He has a rare, incurable neurological disease called Multiple Systems Atrophy, which shuts down various systems in his body and is shrinking his cerebellum and brain stem.  It takes years to diagnose, while the doctors treat symptoms and then start ruling out the more common horrifying illnesses.  For a prognosis, we were left trying to count back and see when his balance problems started.  Patients with MSA can live another 6-10 years, but if you don’t know when it started, how do you count?

Anyway, Dad’s been declining fairly significantly over the last year, and the last few months even more so.  After visiting twice last year (they live in Oregon, I live in Indiana), I’ve known we’d probably lose him soon, and I was finally okay with that.  He’s quite ready to go, and with a deep faith in the Gospel and the Plan of Salvation, he and I know where he’s going and the joy and family reunion waiting for him there.  And as his quality of life has dropped, he is quite ready to be done with this body.

Through all of this, my stalwart mother has been his sole caregiver, and we worry about her as much as Dad.  She’s strong and tough, but she is 76 and has hip problems that she won’t do anything about as long as he still needs her.  We’ve tried to get home health care in, and they came for OT and PT and speech therapy to help with his swallowing, but once the additional devices were set up, that was it.  Mom and Dad get too much in Social Security to qualify for Medicaid, and Medicare won’t cover home health aides unless he needs skilled nursing.  Which isn’t usually necessary for MSA patients until maybe the very end.  Hospice help would be great, but there’s no predictable end to this disease, so that wasn’t a resource either.

Ballintubber Abbey, summer 2010. We borrowed a wheelchair for traveling.

We kids even talked about gathering our resources to pay for an aide, but Mom scotched that idea very quickly.  She could take care of it, and we weren’t to use our money for that!  (You can tell where I get my stubbornness from.)

So why was I blindsided when I found out that Dad’s doctor had put him in hospice last month?  We know we’re going to lose him, and Mom will get the help she needs, so it’s nothing but good, right?

And yet I spent the next two days with my brain on a roller coaster ride. If you had asked me, I couldn’t have told you how I felt.  I couldn’t turn off the worries and what-ifs.  I functioned, but I couldn’t concentrate on much.  Christmas shopping?  Oh, yeah, I guess.  Wash the dishes?  May as well.  Bake treats for the neighbors?  Gee, do I really have to?  Losing Dad, and worrying about how Mom was going to get through this, were the last things on my mind at night, and the first thoughts I woke up to in the morning.

At the time, I wouldn’t have said I was sad,  but looking back, sorrow was a big part of it.  Sorrow that it’s definitely happening, sorrow for what Mom has to go through.

Happier times: 50th Anniversary, 2007. The only problem then was veering "off course" when we walked down the road.

Now that I’ve adjusted to the idea, I’m doing a bit better.  Still a whirlwind of arrangements, though.  We kids had planned on going out for his birthday in mid-January.  I’m the only sibling with grown kids and a portable job (another reason I love writing, and I bless the inventor of the laptop!) and I was going to stay for two weeks.  But when Dad had a few really rough days at Christmas, Mom voice showed her to be at the ragged edge.  Sure, the physical help is there, but she’s losing the love of her life.  Who cares if they had 54 years together – she wants more!  So I’ve withdrawn from my college semester and I can stay as long as needed.

I wish I could give them extra time, or wind the clock back and take this horrid disease away completely, but I can’t.  My job now is to ease Dad’s transition and support Mom through it.  And while the hospice announcement was a surprise, I will be eternally grateful for the program and the wonderful people who help.

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7 Responses to Blindsided by Hospice

  1. SJ Driscoll says:

    Sorry for what your family’s going through, Jen. You’re lucky to be able to stay with your parents. Best wishes to you all.

  2. Melissa Garvin says:

    I was really so happy I had a chance to see your dad (and mom!) last summer. It’s been years since I’ve seen your folks, but even after all that time, on outward appearance they seem to have hardly changed at all.
    Your dad is a favorite uncle of mine, and growing up, I was always too excited when I heard they were coming to visit.
    And I feel too sad for your mom. Wish there was something I could do. Please give them both a big hug from me and tell them I’m thinking of them.

  3. So sorry Jennifer–my thoughts are with you.

  4. Ginger Calem says:

    Oh honey … I’m so sorry! Soak up and savor every moment and memory and spend your time where your heart is. I know I’m a virtual stranger but I will have you in my thoughts and my heartfelt prayers! ~ginger

  5. Jennifer – I am so sorry for the very difficult situation you, your parents, and the rest of your family are having to face. Please, listen to the Hospice nurses, give your mom all the help you can, but don’t forget to take care of yourself, too. My thoughts will be with you.

  6. Jennifer Jensen says:

    Thank you so much for all the virtual hugs and prayers. I’ve been busy getting ready for the trip (see next post) so I’m late answering, but I appreciate all your thoughts. Jen.

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