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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Christmas Videos to Make You Smile

Having a hectic, last-minute push for Christmas? Take a moment or two and enjoy these videos – they’ll put a smile back on your face. Here’s the Dance of the Sugar Plum Fairy from The Nutcracker, played on a “glass … Continue reading

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Old Christmas Decorations in a New House

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It’s the 15th of December and I’m still trying to put Christmas decorations up.  Final exams don’t help, plus the fact that some much-needed surfaces are still covered by unpacked-but-not-put-away stuff that I’m not sure where to put in this … Continue reading

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And the Winner Is . . .

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Last Day for Book Give-Away

Just a reminder before I get back to my regular blog schedule:  Tonight (12/10/11) at 11:59 pm is the cutoff for entries to win in the book giveaway. The prize?  A copy of The Goodbye Quilt, an awesome mother/daughter novel … Continue reading

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Gotta-Read Blog Mashup

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I’m in a Blog Scavenger Hunt – Win a Kindle!

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I Thought I was Ready for Christmas, but . . .

Christmas decorations patiently waiting for me.

I love Thanksgiving and I love Christmas, but I’ve never rushed to put up Christmas decorations Thanksgiving weekend.  In fact, I usually start with just Christmas music for a week and THEN decorate.  And the tree goes up about a week later.  The week of music was on purpose, and the week of decorating was just me dragging things out.  But I thought this time would be different.

We moved back from Ireland last November and spent a couple months in a temporary apartment.  The only Christmas decorations I had were a few small items we included in the small air shipment.  Everything else was coming by slow boat, or was left here in storage in the first place.  So this year, eager-me wanted to bring the Christmas boxes down two weeks ago.

We visited out-of-state family on Friday, so Saturday my ever-willing husband and son made multiple trips from the attic:  boxes we’d had in Ireland with figurines, ornaments, wall hangings and table decorations, plus boxes I hadn’t seen for three years, including a relatively new artificial tree.  I put Christmas music on and . . . sat down in a funk.

After all that anticipation, I wasn’t ready for Christmas!

Yes, I had to push on homework assignments for my college classes.  I had normal grocery shopping to do to catch up after Thanksgiving.  I had contractors in and out with a bathroom make-over project.  But mostly I think I just needed time to shift from one holiday to the next.

It’s Wednesday now.  I’ve put the Christmas music back on (Amy Grant’s “A Christmas to Remember” right now), and it feels right.  The boxes are piled next to the piano and last night I pulled out pieces of my favorite nativity set.  I have lots of work to do today, but tonight? Haul out the holly – Christmas is arriving at the Jensen home!

When do you decorate for the holidays?  Does everything go up Thanksgiving weekend or do you stretch it out?  What’s your favorite part about decorating?

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PS: I’ll be part of a fun Blog Scavenger Hunt next week, hosted by Samantha Warren.  It runs from Dec 4th to Dec 10th, her 30th birthday.  She’ll have prizes for finding answers on participating blogs, including A KINDLE! I’ll have a prize or two here as well – check back for details!

 

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Give Great Gifts: Shop Locally

Shop locally for Christmas!

Thanksgiving is over and the Christmas shopping season is well under way.  I read something recently that really had me re-thinking my gift list, and it works for all my out-of-town family, too.

The whole point of gift-giving is (or should be) to give pleasure to your friend/family member, and to show them that you’re thinking of them and you love them.  It shouldn’t have to cost a lot of money – sometimes the best gift you can give is inexpensive but exactly what they want, and sometimes it simply involves time, not money.

With that in mind, what about making your shopping help out your hometown economy, too?  Instead of spending money at big chain stores or ordering it from out-of-state, here are some ideas that will support local businesses and be a delight to give:

  • A gift from a local boutique – clothing, jewelry and gift items that are more than department store standards.
  • A hand-crafted item from a local artisan.  It might be a knitted scarf, a hand-made cuckoo clock, a blown-glass vase, a carved wooden bowl, one-of-a-kind jewelry, or any number of other things.
  • Try floral and greenery arrangements from a local florist.  With your input, they can arrange something unique – exactly what you want without going through a nationwide service and taking what they have to offer.  And remember, if you want to give an arrangement to someone out of town, there’s nothing stopping you from calling their local florist directly!
  • For the person who doesn’t need any more things, how about a service?  Stop in your local shops (or call their local shops) for a gift certificate:  haircut, massage, manicure, snow removal, oil change, dry cleaning, or anything else your special someone might like.

I’m still budget-conscious, and I’m sure I’ll still do a bit of Amazon.com shopping (although that helps us out locally, too, since my son works in one of their shipping warehouses!), but I’m off to scope out my small town stores.  And for my parents, who live in another state and don’t need extra clothing or clutter, I really like the idea of setting up some car care certificates for them.

What about you?  Do you have a favorite local store?  What special gift have you given or received that was locally made?  What’s your best idea for this year?

Posted in Economy, Holidays | Leave a comment

Writer Meets Quilt: the Quilt is Winning

Not my favorite pattern or color combo, but fine to start with.

This really shouldn’t be hard, should it?  I mean, I’m an intelligent woman.  And I’ve sewn off and on through my life: my daughter’s dresses, a few shirts for my husband, skirts and shirts for me, and even a jacket.  And while I haven’t pieced a quilt before, I have tied many, so I should be able to combine the two skills, right?

It all started when we spent a Friday evening up at Kim’s and she mentioned she was starting a block-of-the-month quilt the next day.  “Why don’t you come, Mom?” she asked.  Too much to do, a 45-minute drive up there – lots of reasons not to.  But by the end of the evening I was considering it, and by morning I had made up my mind.  It would be fun to do together and I could do it a section at a time, instead of spending several hundred dollars on the makings of my dream quilt and letting it sit there for two years.  Which I have already done, but that’s another story.

We paid our fee and got our starter quilt block packet, and the first dilemma popped up:  to pre-wash or not to pre-wash.  If you don’t, the seams will pucker a bit when you wash the quilt, an old-fashioned look that some quilters like, and some don’t.  I’m a Don’t.  If you do pre-wash, the edges will ravel and you hope that it doesn’t ravel so much that you can’t get the right size squares out of your strips.

So I pre-wash, iron, and take it to cut out at another evening at Kim’s.  At which point I realize I’m missing one strip.  It must have gotten caught up with one of the sheets in the wash.  Kim cuts and pins everything, I cut and pin what I can.  I go home, unfold three sheets (and two of those were fitted bottom sheets!) and can’t find the missing strip anywhere.  Which means the store forgot to put it in, and I need to drive the 45 minutes back to get a new one.

A week goes by and I never get back up there. Neither do I get to JoAnn’s to buy replacement fabric for the color I don’t like.  I decide to at least sew what I have, but I search high and low and can’t find the Ziploc bag with my pieces!  So I go to the second-month meeting and pay $5 for my next block set because I haven’t finished the first one.  I also find out there were several of us missing a strip.

I come home and wash the new fabric strips, NOT putting them in with sheets this time, just in case.  And I finally make my overdue visit to JoAnn’s,which requires two trips because I forgot my 40% off coupon.  I’m not buying $9.99/yard fabric without my coupon!

Kim warns me that this block is harder than the first – there are a lot of points that have to meet right.  Also that I shouldn’t go back and do the first one first, that I should use the time to get the second block done.  Great, I get to start on the difficult one.

Still Wrinkled!

So this time, like a good girl, I start early and iron my strips.  Which is when I discover that if you pre-wash and don’t pull it out of the dryer right away, you can iron and iron and iron, and some wrinkles are STILL set in stone!  I let the strips hang over the back of a chair while I stew for two weeks.

A non-stewing Sunday rolls around. I set up the cutting table and bring my never-used quilt supplies downstairs (remember the dream-quilt purchase?):  cutting mat, razor-sharp rotary cutter, and a nifty clear-plastic, gridded, wide ruler-thingy. Ready?  No – I can’t find my directions!  I search my purse, my office, the pile of papers on the kitchen counter . . . nothing.  I’m about desperate enough to call Kim and ask her to fax me hers, but I don’t want to make her think I’m a total ditz, even if she already does. The directions finally appear in my purse, sans the Ziploc bag they were supposed to be in.

Before I begin cutting, I take her other tip to heart:  spray the strips with starch to help them keep their shape when you cut.  I mean, what person in their right mind expects you to cut exact squares and sew precise straight lines, when the material is stretchy? I thought stretchy only happened with bias-cut fabric, but maybe expensive quilt fabric is different.  So I spray.

Now, mind you, this isn’t any old spray starch.  We moved, and movers don’t like moving aerosol cans – they tend to explode at inopportune moments.  Besides, my old can of Niagara Spray Starch was, well, old.  Positively ancient.  And one of the things included in my several-hundred-dollar dream-quilt purchase is a bottle of special quilting spray starch that stays clear.  $7.99 for a small bottle, and I stand there spraying like it’s water out of the tap.

Smooth Success!

When my strips can almost stand on their own, I lay them on the cutting table and begin.  Which is when I realize that 1) hurray! the spray starch took out all the wrinkles, 2) the fabric stretched while I was ironing it, and now it has hills and valleys where there should be a straight edge, and 3) you have to lean harder on the gridded ruler-thingy than you do on the rotary cutter, or the ruler-thingy slides.  And you have to keep remembering that, over and over.  Needless to say, I’ve got a few squares that are more like parallelograms.  And a few squares that may be a smidge small in one direction because I had to cut the raveled part off and it didn’t leave quite enough.

It’s been more than two hours now and I have pretty little stacks of mostly-squares.  I had wanted to pin them together so I could sew next session, but I think I’ll quit while I’m ahead.  After all, I’ve still got two weeks.

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