Category: Managing Symptoms

There are not enough tears so why bother to cry! I was reading a book called Being With Dying and the author quoted a dying person as saying “It’s not death that’s hard, it’s the dying that’s a pisser.”  Oh, yeah.

The last few days have been the worst.  He hadn’t pooped in many days but had hardly eaten and had no discomfort.   At first I wasn’t worried, but just in case, I asked the hospice nurse just to check him out Friday morning at 9 am.  I so wish I hadn’t!!!!!

That check resulted in an enema that just hasn’t stopped giving.  The nurse left at 10 am saying it might take til the afternoon.  HA!  Today, 53 hours later, we are still in a “go” mode.  He’s spent his first days stuck in bed, mostly half or fully asleep, so very weak.  In retrospect, this was too aggressive to do to an MSA patient.

Thankfully, his son Cody arrived Friday.  I couldn’t have done it alone.  The worse was not the messiness but the pain Larry was experiencing – stomach cramping, pressure sores being cleaned over and over.  His face was in a grimace, the cords of his neck standing out rigidly.

And yet, because it’s Larry, there were still funny moments.  When Cody and I did something incompetently in the midst of helping him and Larry snickered quietly.  Or when we decided he really needed a shower but we couldn’t make it happen, and I suggested we strap him face down to the roof of the wheelchair van and take him through a car wash.  Cody even promised we’d find a “Gentle Touch” carwash.   Larry managed to raise his eyebrows.

Then last night as we sat waiting for him to finish his breathing treatment and clean him for the last time before we went to bed, Cody started exploring the Hoyer lift that hospice had delivered.  I showed him how it’s supposed to be used and why it didn’t work for us on a carpeted floor and with Larry being so tall.  Cody decided to try it for himself.

In he climbed, and up and down he went.  Rides at Disney, right?

This all sure feels like one of those rides I have always hated that make your stomach drop out.

And yet, when I can pause and stop doing, stop problem solving, I am able to bring more open-heartedness.

This morning I was reading a quote by Lao Tsu about the value of emptying your head, of non-doing.  The doing is the benefit, the being is what matters.

Someone said wiping his ass is CNA work, not a job for a family member.  That may be true.  And yet sometimes, just maybe it is an act of love.  Thankfully, our CNA is as caring and gentle as a family member.  Certainly more skilled.  We’re learning from her how to help Larry better.

There is a messiness to all of life we like to forget, prefer to avoid.  We like it neat and tidy, without pain.  Coming into the world is a messy painful process.  I guess going out of it is too.Dying is a pisser.  And there’s a lot of messiness and pain throughout life, if we are really present to it.

I don’t know if this is Larry’s time to go.  Or if he will revive and we will go through this again.  I do know there is something for me to learn here.

I do know that I am a part of him and he is a part of me, and a part of many others in this world, who’ve known him, loved him, admired his grace and fortitude throughout his life and throughout this process.   When his body goes, today, tomorow, next week, next year – whenever,  he will still be within us, within our hearts.

I just have to stay open and be present.

So where are we now? I’m on this endless road that goes from paved to dirt, twists and turns, and has absolutely no signposts.

Yesterday was a good day, after a good night of sleep rather than the previous night from hell.

Yesterday, Larry was awake much of the day, rather than asleep most of it.  He was able to help support his weight a tiny bit when we did the morning transfer.  He wanted an English Muffin for breakfast (which he wasn’t able to eat because he couldn’t move it around in his mouth, but he still wanted it.)  He asked for his glasses and the sports page of the paper, (although I’m not sure he read it).  His breathing was relatively clear.

Is this an improvement or a momentary blip?  He said he was a 5 out of 10.  Several days ago, with awful symptoms, he said he was a 5.  Perhaps the symptoms don’t determine his state of mind.  I almost felt like yesterday was worse for him in the sense that he had more awareness of what he was going through.

I don’t know whether to be cautiously hopeful or worried about what’s coming next.  As I type this I think, “just stay in the present, Nancy, you will never know what’s coming next.”

Adjusting to a “new normal” has always been hard, throughout this disease.  Emotionally and logistically.  Are we in another damn new normal?  Are we at the end?  How many new normals can I stand?

The impending symptoms of death listed in the book given to us by the hospice are all symptoms of Multiple System Atrophy, things he’s experienced on and off for several years – breathing irregularity and congestions, urinary and bowel changes, body temperature fluctuation, difficulty moving food in the mouth.  A visiting friend experienced in hospice commented on his glassy, almost non-blinking eyes and said that’s often an end of life sign but its another symptom of this disease, one  that we’ve experienced almost a year.

Moving right along…

Yesterday was a good day in other ways.   The new hospice nurse was great!  He’s got lots of useful experience and had already read a bit on Multiple System Atrophy before he came. Hurray!  He arranged for me to have a liquid version of the Xanax so no more crushing pills in the middle of the night.  He lives not far from us so said it would be easy to stop by.

The awesome CNA started five days a week.  She can help me get him cleaned up, dressed and moved from the bed to his wheelchair.  I’ll hire the same person I had before for at least one weekend day.

Friends came over yesterday.  She took me out of the house for a little window shopping in Venice.  Her husband stayed with Larry.  He also fixed a bathroom faucet and ordered a part for a kitchen faucet.  They kept Larry company while I napped, then showered.  They cooked us dinner and helped me get Larry into bed.

Larry’s son Cody arrives tomorrow for the weekend.  I’m so glad!

I have a patchwork of support that has worked this week.  What will I do next week?

We give love, we receive love.  We keep breathing in and breathing out, putting one foot in front of another in this very long journey.

What will today bring?  It was a night from hell.

We were alone in the house and had a quiet evening watching a Hallmark movie.  A friend came over at 9 and helped me get him into bed.  We fell asleep around 10:30.  At midnight he woke me with gurgling gasping breathing.

Breathing treatments.  Gurgling, gasping.  Morphine.  Gurgling, gasping.  Meditating and praying.  Gurgling and gasping.  More morphine.  More breathing treatments.  I thought perhaps this was going to be the end.  I wasn’t in panic.  I just wanted him more comfortable.  I held his hand and leaned my head against his.  He was hot.

I thought of calling a friend.  But what could they do?  I didn’t worry about disturbing them.  I didn’t call because I wanted to just be quietly alone with Larry in the intimacy of the night.

At 2:00 AM I called the emergency hospice line to see if they could offer any other treatment ideas.  I was calm.  I got a recorded message and was put on hold for 2 minutes.  I hung up.  I wanted to just text my questions.

I put Larry’s Bi-pap mask back on him and brought the dog to cuddle under his hands.  The breathing problems had escalated by now to moaning in between gasping and gurgling.  I called hospice again.  More recorded music on 2 more minutes on hold.  I hung up.  I sang to him.  I played music on my phone.

Finally I called hospice again and reached a person who apologized that they were having phone problems.  Asked questions.  Suggested I crush a Xanax and put it under his tongue.  Said they’d call the triage nurse.

I crushed the Xanax.  I got a tiny funnel – I have two and had the presence of mind not to use the glass one even though it was a better shape because of the possibility he’d bite it.  I brought the crumbled pill and funnel into the room and took off his bi-pap and just stood there feeling helpless.

His body was restless, his teeth clenched.  It would have taken several people to get the crumbs under his tongue.  I should have asked how the hell I was supposed to accomplish this task?  What other ways might I do it.  I wanted to text back and ask.  I didn’t want to call and be put on hold again.

As I waited the 30 minutes for the triage nurse to call, his breathing finally slowed and his body calmed.  I figured the morphine was finally kicking in.

I told her we were okay and she started to ask questions to understand what might have happened to start the episode.  Had I just given him liquids?  Had he aspirated?  She clearly didn’t understand that it was just his Multiple System Atrophy.

So what will today bring?  We have a nurse coming soon to check his pressure sores.  A new nurse who is replacing the nurse we met last week and told our story to and explained Multiple System Atrophy.  This nurse is  brand new to hospice.  Any hospice.  Hmmmm.

I’m glad the pressure wounds will be checked.  They are awful now that he’s sleeping so much.  At this point, it’s not their medical answers I need.   I ordered a medical grade sheepskin to see if it would help. We’ll try that today.  But I want not to have to change bandages on his butt.  At all!

So many of the caregivers who remain active in the discussion group after their loved ones die talk about the PTSD they experience  before and/or after the deaths.  What was interesting to me was how many mentioned the pressure sores as a trigger.

Why does treating pressure sores stand out for these caregivers in the long list of horrors we deal with?  Is it the intimacy of it?  Perhaps.  Is it the ugliness, the odors?  Is it how painful they are for the patient?  Perhaps.  Maybe it is also the absolutely tangible visceral evidence of the the deterioration of the body.

Someone asked me whether I was dealing with my emotions.  Which ones?  Should I be grieving his impending death?  But according to the Multiple System Atrophy discussion groups, these symptoms could go on for months.  And months.

I can only stay in the present.  I’m calm.  I’m accepting.  I’m exhausted.  I’m grateful for my family and friends. To everyone of you who is reaching out by text or message or phone or cards.

In a few minutes I’ll go wake him up and figure out what will today bring.

 

 

 

 

 

So this week, my husband was choking and lost consciousness.  We were eating dinner. It was his last bite.  Usually if he has any trouble swallowing, I help him to stand up and just straightening up seems to clear things.  This time I got him standing but he  stopped breathing and collapsed on me.  I had to lower him to his chair then drag him from the chair to the floor without dropping him or hitting his head on the tiles.

By the time I got him to the floor he was gray.  I tried the Heimlich first and turned him to his side in case anything came up.  Then I turned him to his back again and did some chest compressions in the hopes he’d start breathing.

All the while this was going on, I was wondering whether I should be doing it because he has a DNR – Do Not Resuscitate.  Thankfully he did start breathing!

The next morning he was choking on his pills but at least didn’t lose consciousness.  So scary!

A few hours later he wanted to go to our Off-Key Chorale, a group that was formed by the Neurochallenge Foundation as breathing/singing therapy.  It’s for patients and caregivers but also has a few good singer volunteers so we sound quite wonderful, all things considered.

So death and life within less than 24 hours.

On the way to singing, I told him he was really scaring me with these choking episodes and to cut it out!  He said he was scaring himself.  His speech is difficult to hear at best of times but almost impossible to hear in the wheelchair van, which is very noisy.  I pursued it when we got home.

What was scaring him? I asked.  He said it felt like he was dying in that moment.  Panicking that there’s nothing you can do about it in the moments before you lose consciousness.

I told him how I wondered about his DNR and asked what he wanted me to do in those moments?  Should I just leave him be?

He said “I’m not trying to hurry this along.  Do what you can.”  Then something like “don’t do more.”

So a couple times I’ve confirmed with him  that what he wants is for me to try but not to call 911.

As I’ve thought about it, a DNR is so that if you have something awful happened that stops your breathing, your heart – like a heart attack, or a stroke – you don’t want extreme measures to bring you back.  You don’t want to be brought back in even worse condition than you already are.  You don’t want things done to you that will have negative consequences, like broken ribs.

Choking and Heimlich isn’t quite the same, is it?  If I can help him clear his airways, if I can help him start breathing again, I won’t have caused negative consequences and choking by itself doesn’t have long term negative impacts (like a stroke, for example).  I’m not strong enough to do chest compressions that would break his rib, for example.  His bones have to be mighty strong if he’s fallen about 300 times and never broken anything.

So I feel reassured that I understand his wishes.

But it’s still been quite a tough week of rapidly changing emotions.  It’s not a roller coaster, it’s more like jumping off a cliff attached to a bungee cord (not that I’ve ever done that – or will ever do that!)

I’m just going to hold onto a quote I read from another caregiver.  “Never, ever let the fear of tomorrow steal a single moment of the joy today.”  I would add – never let the pain of yesterday steal a moment of joy today.

I’m also not going to give him tiny cut up pieces of green beans ever again!  Who cares if he gets his vegetables???!!!

 

Today I read that being fully present with someone who is dying is the ultimate act of love.

We can never know what’s to come, and dying is the ultimate not knowing, for all of us, but most immediately for Larry and me.

He’s said he’s scared when he’s in the midst of gasping for breath, but mostly he seems sad.  But this morning when I got close and looked him in the eyes and asked  if the effort was still worth it, he said yes.  We smiled and kissed.

Joe, the hospice chaplain came for the first time today.  We talked for awhile and at one point he asked Larry what he wanted, and he said “air.”

I was taken sideways, moving from what I thought was going to be a religious answer to what I thought was a physical one.

Joe, however, commented  that in Hebrew the word for air is the same as the word for spirit or spirituality, I think.  (Hospice chaplains are trained in all faiths.)  That the human need for air which Larry knows so intimately better than Joe or I, is like the human need for the greater spirit.

I move from moment to moment, exhausted but unable to sit quietly. I feel so weak but others say I’m strong. Last night was another rough one.  Gurgly breathing, bathroom, transfers to and from the wheelchair, gasping for air, gasping, gasping.  I asked if he was frightened and he said yes.  I am too.

I gave up trying to make anything better and just sat in the bed next to him, holding his hand, doing nothing but being present.  It was finally enough.  He quieted and fell asleep, and eventually I did too.

 

Fear and exhaustion in the hospital go hand in hand and this is our 7th day. It’s frightening for us both that he isn’t breathing better.  It’s exhausting for him to find it so hard to breathe and exhausting for me to be sitting at his side, then driving the 25 minutes back and forth, nevermind the emotional toll.

There’s the waiting.  We are still waiting for the results of his urine culture taken Saturday, so they can switch him from a broad spectrum UTI antibiotic to something specific for his type of UTI.

I hate waiting.  I hate not knowing.  I hate seeing him like this.

There’s the frustration and discomfort.  I have finally been able to get them to use his catheters from home. I didn’t think to ask the first few times he complained.  I just told the nurses he liked ours better.  No one suggested we bring them.  Finally I asked and  I kept asking until someone said yes.

They have these rough ones here and we use the hydrophilic catheters at home. They are so much more comfortable for him.   The nurses have never seen them so I’ve showed them how to use them, and they find them much easier, too.  I have a lot of information about them on my resource pages.

We both fear the UTI because any infection is bad in someone with neurodegenerative diseases.  It’s one of the causes of death in MSA.  But the rough breathing is even scarier.

There’s the fear and exhaustion of today and the anticipation of more fear and exhaustion in our future.  It’s one thing to know he’s slowing dying of this degenerative disease, and another to think of him choking to death.  I asked the nurse to put in a call to the pulmonologist, who called me on my cell.   I asked if this was to be expected – that it would take several days to clear.  Or was this the best we could hope for?  Our new normal.

Basically he said this was our new normal.  He  wouldn’t have expected Larry’s lungs to be completely clear because he no longer has the strength to fully clear his own secretions.  But with the Cough Assist machine to help him cough, and the Yankauwer mouth suction (ironic name, huh?) to help remove what he gets  to the top of his throat, we should expect at least more good hours than bad each day.  Those will go home with us, if they can find us the cough assist machine, which appears to be causing problems..

I’m so anxious to get him home, but scared, too.  He’s been here since last Wednesday and he hasn’t done any walking. They have gotten him to a chair and now to his power wheelchair but not even a few steps.  They say he’s too shaky and too weak.  I’m hoping it’s because they don’t know how he walks.  I want to get him up to standing up multiple times a day at least.   But my fear is will I be able to do it alone at home?  At least for 24 hours?  I need my strength.  I can’t allow myself to be in a state of fear and exhaustion.  I need to be ready.

A friend is getting my groceries.  Another friend is picking our kids up at the airport.  Home Health was in and I said yes to everything.

I’m saying yes to any help that’s offered.