Category: Caregiver Emotions

It’s a surreal feeling – today is your funeral, Larry. We’re all here to say goodbye.

It’s been gray and cold here in York, Maine, raining this morning – and matching my mood.   The sun is supposed to shine for your graveside service.  It would be nice if you could arrange that, please.

I’ve been wandering between tasks and tears.  Although it’s a rather gross simile, grief feels like nausea to me.  It’s constantly there. I try to breathe carefully and push it away, then without warning it takes over and I sob.  There’s a moment or two of relief, then the same horrid feeling returns.

It was so hard to leave our house yesterday morning to fly up here.  You were everywhere I looked and I just felt you wouldn’t be there when I came back, that I was leaving you behind in my life.  I know you’ll always be in my heart but I wish with all my heart you were still in my life.

People told me I would feel some level of relief when you died, to be done with the caregiving.  I feel NO relief.  Just grief.

Today is your funeral. We will cry today – my waterproof mascara probably won’t last through the flood.  We will laugh today.  We will celebrate you.

You’d love the laughter. Just know that the tears are the salty evidence of our love.

Larry died at 9:02 last night, April 2, 2019.   He was finally ready, but it was so hard to let him go, so hard to say goodbye.

His pain is gone, but the pain of loss is in every cell of my body.

Yesterday, he was with us and responding at 3 pm, surprising us all by saying goodbye to the CNA.  He nodded his head when I asked if he loved Cody, again when I  asked if he loved me, then nodding again when I asked if he thought I was beautiful.  Hey, why not go for it?

My daughter and her husband sent beautiful messages of love and admiration which I read aloud to him.  He was able to nod when I asked if he had heard them.  My son called and told Larry he loved him on speaker phone.   Cody read him Bible verses.  I read from a book he used to read to me at night – a list of 10,000 things to love in the world, like morning dew, and ball games,  and fireflies.

At five o’clock things started to change.  Instead of days, we knew we had hours.  We cancelled with dear friends who were coming to cook us dinner.

His son Cody and I sat at his side, holding his hands, crying and making jokes. We continually were in awe that Cody, who lives a busy life on Cape Cod, was with us for this moment, for this final transition.

This is my third death bedside watch, Cody’s first.  And the most intimate and irreverent.  He would have loved it.  I hope he did love it.

By 7, after canceling friends who were coming to cook us dinner, we were guilty to admit to each other we were hungry.  I didn’t want to leave him for more than a minute so I ran to the kitchen, grabbed a few beers, and some cheese, and fruit, and chips and guacamole.  We had a “deathbed picnic,” toasting him lying on the bed and passed the guac back and forth over him.  He would have loved it!

By 8 we thought he’d left us but after a long silence – his head relaxed against the pillow and his breathing stopped.  We started to cry with our foreheads against his.  All we heard was our tears.

Then…  he drew in a loud breath, scaring the heck out of both of us and started breathing regularly again.  Really, Larry?  Just like when he’d hide around a corner and jump out at me.

He did that repeatedly until finally Cody said, “I wonder if maybe they just don’t have his room ready so they keep sending him back.”  We got a good laugh out of that.

Cody sang a song to him called “Nobody Knows.”  The first line is ‘nobody knows how to say goodbye.’  Oh, &^^%%!

We felt all the love coming from all over the country, like those airport flight tracking maps with all the red lines of love joining in Osprey Florida.  And yet it was perfect that it was just the three of us in the room, no healthcare workers, no strangers.

Finally, at 9:02 he was quiet.

I didn’t know how hard it would be to say goodbye.  We had told him we loved him so many times over these last days.  We’d told him the wishes of love that so many others had sent.  What more was there to say?

Larry, you showed us how to live.  You showed us how to laugh. You showed us how to live and laugh while dying.  You were always you.  As Sam said  “you were just a good person all the way through.”  You were an incredible partner, an incredible parent, “which will forever be a gold standard for me,” said Krista.

You fed us great food, you made us happy.

You loved well.  You were loved.  You will always be in our hearts.

That’s why it’s just so damn hard to say goodbye.

So many emotions.  We’ve completed the re-entry to hospice. My daughter flew in and has managed all of the details, given so much loving care to both of us.  I had to make her go home to her husband, her two year old son, and her consuming career. Now a dear friend is with me.  It’s early hours, still dark. I’m so tired.

Larry’s been sleeping or half-sleeping most of the day, some hours in bed, many hours in his wheelchair.  He’s drinking a lot, eating almost nothing.  He seems calm, only in pain when we move him, and can respond with head nods or finger raises.

Thursday night he had a horrible breathing/gasping/gurgling episode so we were up for hours, then I was up for a few more hours, unable to sleep.  Somehow, my anger at hospice started to work its way from the forefront into the background and I felt acceptance seeped into me.

In those dark hours I started to feel part of the web of life, and death.  To accept him gradually, slowly leaving his body, over years, now over weeks, days, and hours.  I held his hand, I meditated with him.  I tried to say the Lord’s Prayer but my muddled brain couldn’t remember the order, so I sang it to him instead – the song a memory from my high school choir years.

The process we’re going through felt bigger than both of us.  I felt peaceful, surrounded by the love of our “community of caring” – all the family and friends, old and new, that were supporting us in their hearts and their actions.   People reaching out by text, phone, cards, or comments on this blog, people showing up at our door with food.  A neighbor I don’t know all that well came over with a list of all the days and times this week she could sit with Larry if I wanted to get out.

My hand made wedding ring broke this week.  Such irony.  It was so tight I had to have it cut off.  That felt like a horrible symbolism, seeing the tool cut my rings in half and I cried.  But this wonderful local jeweler fixed it overnight and they are back on my finger, looking all shined up and beautiful.

Many people with Multiple System Atrophy die sudden deaths, their breathing just stops.  I used to think that would be a blessing but now I’m not so sure.  If things continue as they are, this will be a gentle death for him, and yet not sudden  –  we get to say “I love you,” many times over.

And of course, he many rally for awhile and we’ll go through this process again.  And perhaps again. Multiple System Atrophy is such a cruel disease!!!!!

I’m tired.

I’m tired.

I’m tired.

His needs have increased so much in just this week.  He’s thirsty.  He reaches for the cup or tries to roll his wheelchair toward where it sits on the counter.  But he can’t drink alone  and needs to be given sips of water.  Sometimes he can sip through a straw.  Sometimes he needs the cup held to his lips.  He needs his position changed in his wheelchair.  He needs his wound bandages changed.  He’s thirsty and wants sips of orange juice.  He needs medicine. He wants something but can’t tell us.  He’s thirsty.  He’s thirsty.

I’m tired.

One day a symptom gets better.  Another day, there’s a new symptom.  Where are we on this journey?  No one knows.  There is no knowing.  There is no control.  Only his needs.

At times I feel such love and such sadness.  When someone arrives that hasn’t seen him recently, I see his decline with their new eyes, and am almost stunned by it and want to cry.  Other times, I’m angry at him for being so needy. Can’t I just eat my own dinner, instead of giving him sip after sip of water? I’m tired! But he keeps reaching for the cup.

So many emotions.  And then there’s a moment in the day where I see the faint glimmer of a smile, the tiny mischief in his eyes as something absurd happens.

I love you, Larry.

There are so many things I miss that Multiple System Atrophy disease has taken away from us!

Ability to travel, for example.  We loved to travel together.  A weekend, a week.  New surroundings or familiar ones.  Warm or cold.  Skiing was featured in a movie we watched two nights ago and I suddenly missed the fun we had riding up the chairlift together and skiing down, enjoying the conditions or complaining about the ice, then quitting early to sit at the bar for an apres-ski cocktail. I miss the fun and laughter together in those surroundings more than the skiing itself.

The more poignant ones are the daily things.  The little connections that used to happen throughout the course of a normal day.  Like conversation.  Any conversation.  It’s so hard for him even to get a single word understood. Even with my ear to his mouth.

We were having dinner a few weeks ago and I had lit a fire in the fireplace and then lit a candle between us.  I thought about all the things we used to talk about during dinner – the kids, our day at work, the books or articles we were reading, how we were feeling about life, each other.  Now we just struggle to get through every meal  – getting the food to his mouth, chewing, swallowing without choking.  It’s a slow meal, not because it’s leisurely but because it’s physically hard.

I told him I missed our conversations and asked if he did, too.  He nodded and I was so sad.  He doesn’t even get to have conversations with other people.  Just a few words here and there.  At least I can talk to others.  But it’s him I want to talk to.

Then there’s the physical connections.  The little touches.  A hug and kiss before he left for work.  Holding hands. No shoulder rubs, back rubs, foot rubs.

We used to always snuggle on the couch when we’d watch TV.  Now he sits in his wheelchair and I sit on the couch alone.   He used to gather me in his arms to warm me up when we first got into bed.  Now I help him get from wheelchair to walker to bed.  Lift his legs onto the mattress and position his feet on the foam cushions that protect them from bed sores.  Help him with his catheter.  Then put bandaids on his nose before I put on his face mask and turn on the oxygen and Bi-Pap machine.  Those are all physical connections but not quite the same as snuggling.

Other things I miss?  Walks!  On the beach, summer and winter.  In the woods of New Hampshire, on the colored leaves of fall or with snow falling around us.  In the shallow waters of the Gulf.  Just four years ago, when we came to Florida for a few months before we moved here,  we were walking seven miles a day, barefoot on the beach.  We’d walk to a beachfront restaurant for a cocktail, or to another for breakfast.

I miss eye contact.  Catching his eyes and knowing just what each other was thinking at a party.  Now his head tilts down and he rarely makes eye contact.  Sometimes I just perch on the edge of the bed and look into his eyes when I get him up in the morning, just for that connection.

The other day a friend was headed to the airport to be met by her husband on her arrival.  I remembered all the months Larry would drive from  Cape Cod to Logan Airport in Boston to meet me when I’d return from working a week or two in Alaska with the Alaska Native Healthcare organization Southcentral Foundation.  I’d walk down the concourse and find him standing tall, waiting, and my breath would catch with love.  Now I never get to see him stand straight and tall.  Even when he transfers from wheelchair to wherever, he is bent way over.

Most of the time I focus on what we have.  But sometimes I can’t help thinking about things I miss.

I guess it will only get worse.