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.



Five Important Caregiver Lessons from a Respite Weekend

Original painting and quote from SenecaI learned five important caregiver lessons from a recent respite weekend.  I went on a yoga retreat because the info was sent to me by Lynn Burgess who teaches a yoga class at our local Parkinson’s Place.   I knew I needed a break but  didn’t have time or energy to plan anything by myself.  Larry’s son was coming to visit anyway so generously scheduled his trip so I could go.  They had fun together.

What did I learn?

  1.  Fatigue Blindness:  You don’t see or feel how completely worn down you are until you have a break from it.  I slept 30 hours in 3 days.  It took me a whole day to realize I didn’t have to jump to help if I heard a noise.  So if we have an opportunity for a break, we need take it even if we aren’t desperate.  Just like people need a real vacation from the responsibilities of work (including from emails, etc.) we need a vacation from caregiving responsibilities.
  2. Emotion in the Body:  I found that the physical movement in the yoga classes released emotions I had stored in my body, not just my heart and mind.  I had a leadership and coaching mentor who always talked about the muscles and cells of the body storing emotion and stress but I’d forgotten about it.  Though I originally figured I’d only attend a few of the yoga classes and spend the rest of my time doing nothing, I found the yoga an important part of letting go.  Talking, thinking, writing, sleeping isn’t enough.  We need to move.
  3.  Ease and Action at Once:  The yoga instructors kept reminding us to pay attention and relax parts of our bodies that weren’t needed in a particular pose.  For example, if you are doing a twist at the waist do you need to tense your shoulders, or your mouth?  I felt it as metaphor for being able to hold the pain of this disease (and other challenges we encounter) as well as feel the joy in other parts of life, or a day.  And to not waste energy I don’t need to be using (like when I resist what I cannot change).
  4. Opening up Space:   In class we were continually reminded to open up space in our bodies – to move the ribs away from the hips, for instance.  We could move more easily into the yoga poses if our bodies were open.  It reminded me how we hunch over to protect ourselves from physical pain and we hunch psychologically to protect ourselves from emotional pain.  Then we get stuck and rigid in that hunch.  We might be able to move more fluidly through our days and manage the emotions and challenges of caregiving if we could open up and allow more space in our minds and hearts.
  5. Breathing into Discomfort:  I was often surprised at how noticing my breath and breathing deeply would dissipate the discomfort of a particular stretch or twist.  The tight muscles would just soften.  We hold so much tension as caregivers – the tension of being ready to jump when we are needed, the tension of holding our grief in check, the tension of managing our desire for our old life, etc.  Maybe noticing shallow breathing, taking deeper breaths, breathing into the tension and discomforts of the daily tasks will make them easier.
view of the sunset from my hotel room
Sunset and Moon from My Hotel Room

I wasn’t sure about going, leaving Larry, but I’m so glad I did!  I’m grateful for the perspectives, the opening from being in a different place, and doing something different to renew and restore my head, heart and body.  I hope I remember my five important caregiver lessons now that I’m back in the real world.


Guilty and Tired Caregiver

Original painting of a red leaf with the quote "Let Anger Go..."I confess that I am an angry and guilty and tired caregiver.  Now that it’s September, I realize it has been a year without a break.  Not even a day.  Not more than a few hours. Of course, that is even more true for him!

I watch him pulling into himself.  He doesn’t make eye contact very often now, or smile his little smirky grin, or make jokes.  It is harder to care for him when I don’t feel him caring for me.   Maybe he’s angry and tired, too.

He worries about inconveniencing the kids, or inconveniencing his brother, but he never seems to worry about inconveniencing me.  Even though I know it’s not true, it makes me angry.

He doesn’t want any outside help, doesn’t want a nurse’s aide from hospice to shower him, doesn’t want his brother to see him naked.  I understand it’s his sense of dignity.   That means I have to do all the “private” things.  I get worn out.  Then I get angry at him for “doing” this to me. I feel guilty for feeling angry.  So I am an angry and guilty and tired caregiver.

I’ve read that it takes a community to care for someone who is dying.  I have finally allowed our friends into the circle of care.  A wonderful neighbor  organized a “Care Calendar” and I’m amazed to see all the people who have signed up to bring us food.  It makes this journey so much less lonely to feel their love in this process.

I wonder what to do next.  I know I need to take care of myself.  But my body has vibrated with his needs for so long, and so much more these last few weeks.  I’m not sure how to separate myself.

I told him how tired I was, how I didn’t think I could do it all myself anymore.  He said “do what you have to do.” I told him that wasn’t fair – he was opting out.  “Okay, fine.  I’ll just call Waste Management and put you out at the curb on recyling day.  Course we’ll need to have them bring a dumpster because you won’t fit in the little blue recyling tubs.”  That got a chuckle out of him.

I know I wouldn’t want to be cared for by strangers.  I wouldn’t want to be anywhere but my home.  But I think I would have given up long ago if I were facing what he has faced.  I’m not sure I could have managed all the incapacities and indignities he seems to be managing with good grace.  I would have wanted out (I think).  Then again, in the early stages of his disease he used to say “if I get to that stage, shoot me.”

He has always had an amazingly tolerant nature, so different than mine.  I guess he had to be that way, being a contractor.  He always needed to please the customer, not himself, so he learned to put up with a lot.  He’s always been naturally easygoing anyway, naturally optimistic – often unrealistically optimistic.

Maybe his optimism makes this process of dying easier for him.

What will make it easier for me?  I try to stay in the present, in the moment, but then how do I plan if I can’t manage tomorrow?  How do I let go of the anger?  How do I let go of the guilt?





Lessons from our Hospital Stay

I’m sitting at my husband’s hospital bedside thinking about what I’ve learned here, the lessons from our hospital stay.  Lessons about advocacy, about asking lots of questions, about being the expert on his care.  And the lessons from our hospital stay that I learned about taking care of myself, or at least the penalties for not caring for myself. We are here after deciding to see a pulmonologist, because while waiting for the scheduled visit to the his gurgly breathing got worse so Larry decided he wanted to go to the ER.


First is to be a loud but polite advocate.  I learned this lesson years ago from my mom’s hospital stays but somehow had to relearn it.  This is especially true with unusual diseases.   You are the expert, though you are in an environment of experts on other things.

I asked each clinician “are you familiar with Multiple System Atrophy because I know it is a very rare disease.”  Most said no, which enabled me to fill them in.  I felt free to share solutions I had read about on the Multiple System Atrophy blogs.

He came in for gurgly breathing.  I had read about a patient saying that a Respironics Cough Assist T70 machine was extremely helpful so I kept asking for one until it arrived in the room.  I had read that suction was effective, which they did, both deep suction through his nose into his lungs (which he hated) and shallow suction like at the dentist’s office.

With each clinician seeing him, I kept asking “what else can we do?”

When the pulmonologist finished sharing his treatment plan, I asked “what else can we do” and after a moment of thought he said “well, we could try a scopolomine patch to try up some of the fluids.”  I jumped on that, saying I had read on the blogs that that was helpful to some patients.

I asked for physical therapy to get him up often and confirmed with the pulmonologist that it was important.

There were glitches that occurred during handoffs from one floor to another and one shift to another.   Particularly around how often he was catheterized and how often he was clean up (washed and teeth brushed, etc.) So I asked that these things get taken care of more frequently.  I only had him to think about.  They had many people to think about.  I was the expert on him and his care.

Lessons from the Hospital for CAREGIVER CARE

I learned my own lessons from our hospital stay the hard way.  I was so busy making sure Larry got what he needed that I ignored what I needed and ended up falling apart.


My fear about his condition made me stay too late and come in too early, thus giving myself only a few hours sleep.  My body started to throb with fatigue.  The next night he seemed so distressed and there was an open bed in his room that they offered me so I said I’d stay, but couldn’t fall asleep.


I wasn’t particularly hungry or thirsty and didn’t want to leave him to buy food, especially after some early glitches after the transfer from the ER to the observation floor.  I munched on a few leftovers from his plate, and some peanut butter and crackers the nurses gave me.  That was it for two days.  I sipped a bit of ginger ale and drank some coffee.

My lesson from this lack of self-care came in the form of a melt-down at 2AM.  A kind nurse sat with me as I cried and then threw up.  I finally decided I needed some help (duh!) and some sleep (duh!) and called two dear friends to come get me.  Good thing they answer their phone at 2AM.

My takeaway lesson for myself from our hospital stay:  you can’t be an effective caretaker to someone else or manage your own emotions during times of stress when you aren’t taking care of yourself.  That would seem obvious.  It is obvious.  But not when you are in a state of agitation and completely focused on someone else.

I’m getting lots of recriminations from my friends and family.  I’ve learned my lessons, at least for now.



What is Self-Care Anyway?

“Make sure to take care of yourself,” well-meaning friends say.  Self-care is important, the caregiver blogs say.  “Are you taking care of yourself?” my doctor asks.

I keep wondering what is self-care, anyway?  I mean beyond the obvious basics of annual physicals, dentist appointments, etc..  On Google, there are over one million answers to a search on self-care.  The first one came up with 45 simple practices.  HA!  Who has time for 45?

I don’t need a list to tell me other obvious ones like eating right, which is not so easy when I’m focused on Larry’s food and I hate to cook, and I’ve taken to stress eating (Oreos or potato chips).  And exercise is always on the self-care list.  It requires creativity and motivation to get exercise when I don’t feel comfortable leaving Larry alone for long.

A very caring and wise person in my life suggested that self-care is making sure you are “filling your well.”  It’s what restores your energy, rather than depleting it, she said.  That makes sense.  Healthy eating restores my energy and a half pack of Oreo’s doesn’t.  Taking a long walk restores my energy, but an  aerobics class with a loud instructor doesn’t.  But what else is self-care?

As I muse on what it is for me, I guess a starting point is just figuring that out.  Self-care is knowing more granularly what fills your well.  That’s hard to notice when so much of my attention and energy goes to filling Larry’s well, one way or another.   I start thinking of a few activities that don’t qualify as self-care for me:  gardening, cooking, television, golf, or reading the news.

After a lot of thought about things I’ve done and how they’ve made me feel, I made a list:

  • Quiet time alone
  • Being in nature – especially expansive views, big views like oceans and mountains
  • Reading
  • Playing at painting and drawing, including doodling, zentangles, and coloring books (rather than trying to create art)
  • Staying away from social media
  • Friends in small groups, not large gatherings
  • Humor – Larry gave me an Amazon Echo and I love asking Alexa for a joke and smiling while groaning at the corny offerings – “How many alligators does it take to change a lightbulb?”  “One – for him, it’s a snap.”
  • Meditation – this is one we can do together.  I just bring up free guided sessions online, some focused on breathing, some focused on relaxing, others on self compassion  – usually about 20 minutes.  He finds it relaxing, as do I.

Wait!  All these are good activities but I’m thinking maybe real self-care is deeper.  It’s about allowing myself to care about me, that I matter.  When we had a normal relationship, care went both ways.  There was a balance and taking care of me wasn’t taking anything away from him, because he did that.

Not that doing any of those things on my list above would take anything away from him.  Oh, darn.  I’m confused about what I’m trying to say.  It goes back to an earlier post about where’s the me in all of this caregiving?  I know it’s my choice to be a caregiver.  So that’s me.

I need to think about this some more.  To paraphrase the poet Rilke, I may not have the answers but I can hold the questions.


“Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.” Rainer Maria Rilke

Losing Sight of Yourself

It’s all too easy to lose yourself to caregiving.  It’s an insidious process.

The needs and responsibilities mount up over time, almost without your noticing.   You start giving a little help here, a little help there.  Maybe you hardly notice.

I didn’t think of myself as a caregiver two or three years ago when we moved down here, although I was.  I made the doctors appointments, helped with buttons, and socks, and cutting food, that’s all, not much.

As his symptoms increased, so, too, did my caregiver tasks.  Each one takes time, energy, some little, some big.  I didn’t really notice that as you add something to your day something else falls away.

The other day I asked Larry what would he say to caregivers.  “You don’t realize how hard it is,”  he said.

“You mean I should tell other caregivers they don’t realize how hard it is?” I asked.

“No. YOU don’t realized how hard it is,” he said, looking at me.

Sometimes it isn’t very hard.  Like now.  I’m sitting outside with my feet up on a cushion, and a hot cup of coffee beside me.

Course, I’m listening for him.

I do take care of myself,  although I make his doctors’ appointments first.  But I’ve had my annual physical, and seen the dentist and all the other stuff you have to do to know you are healthy.  I shouldn’t gloss over this because health is a real caregiver risk.  The statistics are pretty awful about how many caregivers die before the person they are caring for die.  Stress takes its toll.

It’s not just the tasks, the time that caregiving takes, even the physical strength to get this 200 pound, 6’2″ tall man from chair to walker to wheelchair to bed.   It’s the fact that I want to make him happy.  He has limited time.  I want him to be happy, want him to have his choices.

I’m always asking what do you want to do?  What do you want to eat?  Where do you want to go?  What do you want to watch on TV?

In the process I start to forget to think about what I want.  Or what I need. And then I start to not even know what I want.

Sometimes I wake up in the morning and get up knowing I’ll have an hour to myself before he wakes up.  I don’t even know what to do with myself.  There’s always chores, of course.  But what do I WANT to do???

When we first had someone come to stay with him for 3 hours a week so I could get out to do things, I did errands.  Got groceries, my bone density test.  Those things are important but when I ran out of errands I didn’t know what to do.

It’s only recently that I’ve started to say no to him, in little and big ways, when I think it will take too much out of me.  I realize I have to conserve my energy.

The other night I had already eaten and the kitchen was clean.  He’d eaten early and so now he was hungry.   I asked what he wanted.  “A burger,” he suggested.    “Grilled cheese?”  No I’m not making a burger or grilled cheese.  I don’t want to wash pans.  I’m tired.  We settled on toasted cheese.  No pans.  I felt a sudden wash of guilt.

The biggest request I said no to was spending time up in Massachusetts, where we came from two and a half years ago.  We have important family and friends there.  I agonized night after sleepless night.  We’d gone the last two summers and it was exhausting and his symptoms all increased.  And his needs were less, then.

I considered one way, then another, for too many sleepless hours.

Driving, flying.  Flying and having someone drive our car.  What to do with the power wheelchair.  How to find the appropriate accommodations.  I went back and forth.  Go, not go.  A month.  No!  Maybe a week in a handicap accessible timeshare.  Flying.  Borrowing a wheelchair.

It didn’t help when I read one of the online discussion groups answering someone’s question about taking their loved one on a trip.  GO, go, go, many of the answers said.  Don’t deprive them of this.  You can make it happen.  There was nothing about the emotional and physical cost to the caregiver.

Finally we decided not to go.  He didn’t want to go without his power chair.  He wanted his comfort, he said.

I realize as I write this, that it’s not a good example of me saying no.  He was the one who finally said no.  Well, I guess I said no to driving up the 1500 miles in the wheelchair van.  Darn.  I knew right from the start that it would be too much for me no matter how we went.  But I didn’t say no.

It’s hard to remember that I matter, too.


When the Caregiver Needs Care

I woke up with vertigo – the bed was spinning, the room was spinning.  But that didn’t stop my caregiver responsibilities.  He still needed help going to the bathroom and getting back into bed.  I tried going back to bed but it was worse.  I got up with the hopes the dizziness was less when I was upright.  Plus I had to feed and walk the dog.  Brutal.  It was a short walk.  I had a little tea and toast.  Couldn’t face coffee.

Then time to help him get up and get dressed.  We both need showers but I can’t face it.

Got him some breakfast.  Gave him his pills.  Helped him use the nebulizer.

Vertigo happens when the crystals in the inner ear clump up and get stuck in one place – the wrong place.  I tried the physical maneuvers I found on YouTube that are supposed to move the crystals.  No help yet.  I’ve tried the vertigo medication, which I have for motion sickness.  No help yet.

He needs to go to the bathroom again. It’s good for him since he’s increased the medication that is supposed to relieve the swelling in his feet and lower legs by flushing fluids out of him.  Maybe it’s finally working.  But painful for me to get up and help.

Just like with a baby, caregiving responsibilities don’t stop because you don’t feel up to it.

I am going to let go of anything else that needs to be done.  I will call for help if I need it.  I will try not to feel sorry for myself.   This will pass.  I will muddle through.

Good Day or Cranky Day

I was cranky with my husband yesterday as I tried to complete a project. In finishing I had to call a neighbor to help put boxes up on the high shelves in the garage – something Larry could have easily done in years past. As I do all this, I wonder if he is sitting there frustrated that he can’t help. Or is he so in his own world of challenges and pain that he doesn’t even notice?

I found myself very impatient, yesterday, with all his incompetencies, then guilty for my impatience. He can’t get out of a chair alone so I have to help – even with his lift chair. He was trying and couldn’t, trying to shift his weight with such ineffectiveness! So I jumped in to help before he even asked. I need to cultivate more patience – it would allow him more independence and make me feel less responsible. There’s rarely any rush.

Eating is really becoming difficult – finding the right foods, cutting them to the right size, finding the right implements. He wanted a big breakfast. But the tiny sausage pieces and home fried potato chunks kept getting stuck in the roof of his mouth. Even though I thought I’d cut everything small enough. He doesn’t have the tongue strength to move things around in his mouth easily.   So I had to keep sticking my finger in his mouth to dislodge things.

His eating is so slow that I am done way before him. Then the question becomes what do I do while he is finishing? Do I stay with him and read the paper? We can’t have a conversation because he can’t talk and eat because of the risk of choking. I have to stay close in case things get stuck or he chokes. Do I get up and start cleaning up the kitchen? What I sometimes end up doing is getting myself more food, which I don’t need, because if I’m sitting there I should be eating, right? Cultivating more patience, eating more slowing and mindfully would both help.

The real problem was that my focus was on getting my project finished, then cleaning up all the mess that made.

Whenever I have a task that takes my time and energy, I lose my patience and resilience to be available for his needs, not just physically but available emotionally, to help with grace rather than with resentment.

Lesson for the day: Ask myself whether it’s worth the price of impatience and resentment, to get the task done. Make a conscious choice with awareness of the consequences. Did I really need to get all that stuff done in one day? No! Did I think about how cranky it would make me? No. We both would have had a better day if I’d chunked the project into several days.

I try to remember that my goal now is creating a good life for both of us, one day at a time. It’s a different life with different goals.   The old way of thinking, of living, of checking off my to-do list, of putting things on my to-do list in the first place without thinking of the importance versus the consequences – that’s what messes up a good day.

Each day matters more now. It’s important to have as many good days as possible.