Kicked out of Hospice

Just when we finally thought we were on the same page with our hospice provider, we got kicked out of hospice.  Maybe I just complained too much.

We knew recertification was coming in February.  When I asked what the process involved, we were told we’d have a face to face with the nurse practitioner.  I’d been preparing a list.

But we got a call at 5 today.  “We’ll be there tomorrow for you to sign the discharge forms.  The decision was made today.  He’s stable.  He doesn’t meet our criteria.  You can appeal.”

What kind of care is that to deliver news of such import with no preparation?  No empathy for what that might mean to us.  I cried for 45 minutes.  I don’t have any energy left for this.

I guess I was too good at being positive.  I want to give up.

How can they say he hasn’t declined?  He’s lost more than 30 pounds.  Without major preventive measures, he has constant skin breakdown.  He’s lost so much dexterity I have to feed him many meals, and many others he just can’t eat at all.  He barely makes eye contact.  You can’t hear his voice.  He needed morphine this week his breathing was so bad.  He was so weak last week he slid to the floor and we needed to call the non-emergency 911 number for help to get him up.  He had an episode  this week where he got dizzy then just went limp, eyes rolled back, no response to my voice.

They say he’s stable.

So as of tomorrow, no CNA, no medical equipment, no medicines, no nurses checking him out.  We have to re-engage with all his physicians, go to their offices to get them reacquainted with his new symptoms, get new prescriptions for meds, obtain new durable medical equipment, fight with insurance for coverage.

This stinks!!  I hate this!!! I want to give up!!!

We didn’t see this coming.  It’s a terminal degenerative disease and he’s at end stage – how can it be stable???

Life isn’t fair in so many ways.


Why Are We Still Enjoying Life While He’s Dying?

Original artwork called Indigo HorizonWhy are we still enjoying life while so many others in similar situations can’t?  In the caregiver discussion groups I read of people losing themselves, losing any pleasure in life and that’s not us, except for days here and there.  I’m realizing there are lots of reasons.

My daughter pointed out that Larry is still Larry – no cognitive decline or personality change so far.  That’s huge.  Although mental deterioration isn’t as common with Multiple System Atrophy as other neurological diseases, caregivers  report some loved ones have serious cognitive issues and others with major personality changes.

Last week we went to Walmart to buy some board games he thought he could play and spent one evening playing “Shut the Box.”  We couldn’t have done that if he wasn’t all there.

Who we both are makes a huge difference.  After all Larry was never an angry guy – more go-with-the-flow, so he’s amazingly tolerant of the impact of this disease,not cranky.  I’m definitely NOT go-with-the-flow, but I am pretty resilient.  Generally we are both happy optimistic people.  We take what comes and make the best of it. We still have a good marriage and enjoy each other.

We’re friendly, too.  People want to help us, and seem to enjoy helping us.  That’s partly how awesome they are but also how awesome (? ha) we are.  We moved away from our long time friends, but we moved into a real community of people. Most are at an age where they’ve seen enough ups and downs in life that they are empathetic to our situation.  Walking the dog helps to see people on a daily basis, too.  It forces me to get out.

We’re open about the disease and not self-conscious.  We invite friends for cocktails rather than dinners and they are happy to come.  They aren’t uncomfortable around Larry’s disabilities and symptoms.  We’ve gotten so we don’t worry if I have to stick my finger in his mouth to move a cracker that got stuck, and they don’t seem to care.  We don’t hide what’s going on but we don’t dwell on it either. Because we still do stuff we still have stuff to talk about other than the disease.

Where we live helps in more ways than just the people.  It’s beautiful and warm and sunny and green year round.  We can get outside and see pretty things, pretty places.  We’re not shoveling snow or putting on coats and socks and hats and gloves just to leave the house.

I’m also realizing the freedom the power wheelchair has allowed us to continue living life.  We found out how to qualify through one of the Neurochallenge education sessions. He might be bed-bound now without it because  I can’t push him in the small wheelchair that hospice provided.  Without the chair we’d be unlikely to go to a meditation with a Buddhist monk like we did last night, or go to see The Fiharmonic (an a cappella group), or see the manatees that cluster in the warm waters of a power station like we plan to do next week.

His type of symptoms help, too, and the fact we’re in a plateau and not adjusting to any new ones.  He can’t do any of the activities of daily living himself, he’s lost tons of weight, he has breathing and bowel and eating challenges, just like other MSA patients I read about. BUT  he has no pain, no nausea, no symptoms that make life unbearable (at the moment).

And last but definitely not least is my willingness to do the hard work.  Because it is hard!  Doing his exercises daily to keep him able to transfer from bed to wheelchair, making sure he does his breathing therapies twice daily.  Educating myself and fighting with the healthcare system to get what he needs.  I’m willing to do the hard work of getting us out of the house, of building a fire, or looking for things we can both do.  I do it for me as well as for him.  I need as normal a life as possible to stay mostly sane, even if it is hard work. I need us to be still enjoying life even while he’s dying!


Caregiving Ups and Downs – Calling 911

Painting of the Ups and DownsI shouldn’t have waited to call 911 for help.  Actually, not really 911 – the non-emergency one.  The ups and downs got to us.

We’ve been enjoying life each day in new ways.  We did make it to the concert two days ago and had a blast.  The Venice Art Center was an easy venue for Larry – small, no stairs or ramp, or tables, to navigate around.  The band, Mike Imbasciani and the BluezRockerz, played blues from 1928 to 2018, influence by rock, folk, and country.  They were loud and fun and people were dancing in their seats and in the aisle.  Big up!

Yesterday we had visits from the CNA and the hospice nurse to do wound care on the pressure sore on his heal, which didn’t look any better.  Bummer.  The nurse also brought up the fact that he is up for recertification in hospice.  If he gets “live discharged,” meaning they don’t think he qualifies, we’ll have to reconnect with all his doctors, go through a sleep study to get his Bi-pap machine ordered, and see a respiratory specialist to find a way to get his Cough Assist and suction machines again.  And no more CNA for showers.  UGGG!!!  Big down!  We’ll worry about that when the time comes.

It was a beautiful afternoon and Larry came out in his wheelchair to walk Bear with me.  Then we lit a fire in the firepit and enjoyed cocktails outside, while I cooked dinner on the grill.  His butt hurt sitting in his wheelchair, so after dinner we moved him to his lift recliner. We watched a fun mystery on TV and ate chocolate cake.  Big up!

Then, in trying to transfer him back to his wheelchair to go to bed, something happened.  I was holding him and he was leaning on the walker but somehow we lost his balance and he didn’t have the strength to hold himself up and I didn’t either so he slid to the floor.  No fall, no crash, no injuries.  But now he’s on the floor.  Big down – literally and figuratively!

Months ago, that wouldn’t cause much of a problem.  We had a method of turning him to one side and getting my knee under his armpit and then helping him get one foot under him and with a chair nearby to lean on we could get him up.

Normally I’d call a neighbor for help but it was 10 PM.  I didn’t think we’d be able to do it ourselves but he wanted to try.  We tried once and he felt so heavy.  I almost lifted him myself but couldn’t.  He insisted on trying going the other way, moving the wheelchair around him.  I said “one more try is all I’ll give you.”  No dice.  I called the non-emergency 911, they came (in a firetruck with lights flashing so we’ll have neighbors calling today) picked him up and all was well.


This morning I can hardly walk.  Somehow I did something to my foot in my attempts to get him up.  It’s hurting in multiple  weird ways.  Huge down!

It’s frustrating, uncomfortable, and inconvenient.  And I feel stupid for not calling for help in the first place.

Lesson to self – things have changed.  What used to work may not work.



Making Life Brighter for Both of Us

Original painting of a yellow and orange sunflowerThis new year (all 10 days of it) I’ve tried to find something fun or different for us to do each day.  Some things are little, like a walk together (he rolls in his chair, I walk).  Some things are bigger, like a trip to Arcadia – an old town about an hour inland from us.   It’s making life a little brighter for us both.

My daughter (the PhD researcher in Palliative Care and Hospice for people with dementia) commented that what I do is focus on living rather than dying.  Yes, definitely.

Somehow, accepting the dying has made living easier.  We’re not resisting.  We aren’t focused on fixing the symptoms, just making our way through them as gracefully as we can.   With as little aggravation from the healthcare system as possible (grrr) , but that’s a post for another day.

Maybe the fact that he said he thought he was going to die in February has made our time seem more precious, but strangely I don’t feel more urgency.  I just feel more present in today.

I wake up thinking “what can we find to do today?”  One night we played Scrabble – he’d slide the letter tiles out from behind a screen and I placed them where he pointed on the board.  We’ve had neighbors over for a cocktail – can’t do dinner anymore, it too hard and slow for Larry to eat.  One night I was walking the dog and saw a friend out in the street and said come on over.  We lit a fire in our firepit, they walked over with their own drinks, and we sat visiting outside as the sun set.

Last night I’d invited a woman I met in our community yoga class to bring her husband for a cocktail.  He’d lost part of a leg many years ago in a paragliding accident and they have a great energy that I enjoy.  We had some bourbon, some marinated mushrooms and olives I’d picked up earlier at an Italian market.  Larry had a couple choking moments but it didn’t seem to bother them and we had a lovely visit. I’d even thought to make dinner before they came so it was quick to heat up after they left.  Yay me, or “brilliant” as our guest would say as he’s a Brit.

Larry looking at the turquoise waters from Sharky's PierSeveral days ago it was perfect weather.  Sunny, about 75 degrees, a light breeze.  We drove south to the next town where there’s a fishing pier (Sharky’s) we’d never been on, figuring we’d get out on the water before the red tide returns.  The water was turquoise, people were catching big stingrays, there were bright colored umbrellas shading the tourists in their bathing suits, and the egrets and pelicans circled overhead.

What will we do today?  I’m not sure.  We have the hospice volunteer coming  this afternoon so I can do errands.  But maybe tonight we’ll go to a little jazz concert at a neighboring art center.  Or maybe we’ll find something right at home.

Caregiver’s View of What Will 2019 Bring

What will 2019 will bring?

The holidays are officially over.  On Wednesday with the help of our CNA I dragged the Christmas tree to the curb for pickup today.  Last night a neighbor put our boxes of Christmas stuff up on the garage shelf.

Putting away the holiday decorations has been bittersweet.  Last year I wondered if we’d have another year to celebrate together.  This week as I put them away I didn’t think about next year, just that I was happy we’d had this year.

New Year’s Eve we went to a party – first time in many years we were out past midnight.  Friends brought the ramp from our house to the house of the party so Larry could roll right in their front door.  He got confetti bombed at the stroke of 12.  I keep finding glittery squares around the house as they fall out of his wheelchair and they make me smile.  It was kind of a normal night.

It’s easy to get jealous of friends who are in London or in Paris.  Friends who celebrated with family.  Friends who are headed out on their winter cruise.  Family who are skiing.

So I muster my energy and get us going.  We went to the beach in the golf cart for a sunset.  New Year’s Day I took out the kayak for the first time in about 9 months, and  I got Larry on his recumbent bicycle.  He struggled keeping his feet on the pedals and he pedaled very slowly but he made it down the street and back with me and the dog trailing in the golf cart as an emergency pit crew.  Two nights ago, we had a picnic dinner by the firepit.  Yesterday came with me to walk the dog for the first time ever, rolling the wheelchair out the garage and down the street to the paths that meander through our community.

What will 2019 bring?  I have no idea.  I can’t imagine it will be a good year.  What do I wish for?  Maybe less energy fighting the medical system and more time enjoying each day.

I asked Larry what he thought 2019 would bring?  What did he hope for?  He said “to make it to February.”  His symptoms have been pretty controlled recently so his comment shocked me.  “I’ve always hated February.  I just have an instinct about it.  Black February,”  he said as I questioned him more.  I asked if he’d ever felt this way before and he said no.

His comments sit heavy with me.

He’s seemed in pretty good shape.  But it can turn so quickly.  All of a sudden yesterday morning his breathing was awful.  He was gasping, panting rapidly.  Here we go again.  The day was full of challenges. In the bathroom. Eating.  On and off gurgling breathing.  A rough night.

Today is better.  Our first hospice volunteer from the Transitions program is visiting.  She brought us Indian food for tonight’s dinner.  I’m writing this in a rocking chair on the screened porch of the little town library.

Who knows what 2019 will bring for any of us.