We’re Going on a Hospice Supported Vacation

Original painting of a sunrise over the water I hope we'll see on our hospice supported vacationWe’re doing well just the two of us, so we are going on a hospice supported vacation tomorrow!  Just three hours drive away but we’ll be leaving the toxic red tide behind.  I am excited, overwhelmed, and worried.  What made the decision to go was that our hospice here has arranged a travel contract with the hospice there!

Excited because we haven’t traveled for a year, not even one night in another location, and we love to go new places.  We aren’t planning on sight seeing but we’ll have a suite with a view.  New sights, new smells, new sounds (hopefully ocean waves).  Sunrises over the water instead of sunsets.  No chores – just each other!!!

Overwhelmed because there is so much to preparing – equipment, and paraphernalia of Larry’s life (special cups, spoon, straws, lap tray, dining scarves, etc.).  Thankfully the hospice over there will supply the oxygen – that’s the heaviest, biggest thing.   Then there are medications, and of course, clothes, sunglasses, hats, books, etc.  And dog food, poop bags.

We’re bringing all our food, too, so I don’t have to shop or cook when we get there.  Luckily we have many frozen leftovers from all the wonderful meals neighbors have made for us.  We have two coolers waiting to be packed tomorrow morning.

I’ve been getting the house ready – paying bills, taking care of plants, pool, trash, and arranging for neighbors to pick up mail.  I’ve had a lot of lists this week.

I’m worried because after a couple weeks of breathing clearly, Larry’s lungs are congested again and his breathing is gurgly and getting worse.   Is it the air born toxins from the red tide?  Or my contagious stressed energy getting ready?  Or the disease progression?

Travel has thrown his system off even in the last three years when he was in better shape.  The drive is short but I hope the changes don’t impact him negatively.  Maybe the clearer air will actually make him breathe easier!  Let’s hope!

I’m thrown by the sound of his breathing, though, because it brings me back to our crisis weeks and reminds me of the presence of death sitting out there on the horizon.  It’s so easy to forget, or at least ignore, when his symptoms are quiet.  And it all comes roaring back, almost as a painful adrenaline shock, when the symptoms act up.  I’m trying to meditate more, drink less, and breathe deeply.

I’m still glad we are going, with all that said.  It’s about continuing to pursue the best quality of life possible given the constraints.

Because this is a hospice supported vacation,  I’ve already had two conversations with their clinical director.  She said they want to support us having a good time – providing help when we need it and staying away so we can enjoy our vacation when we don’t need help.  Awesome! We’ll have a nurse visit as soon as we arrive, and have scheduled two CNA visits for his showers and shaves.  And they will be available 24/7 in the event of any problems.  With all our equipment and meds, there’s nothing I could do here that I couldn’t do there anyway.

Here’s to having a good hospice supported vacation!  Wish us well.


Quality of My Caregiver Life

Original painting about Caregiver Quality of Life and quote "What matters is?"I took a caregiver survey last week and they asked me about Larry’s quality of life and how I knew it, but not about the quality of my caregiver life.  It got me musing a lot about quality of life, what it is for me now, and in the past.

Apparently there are lots of studies of patient Quality of Life (QOL) used in studying medical interventions and outcomes, and there are questions about whether they are patient centered if they don’t consider the patient’s goals first (duh!).  They give an example of a questionnaire.

I also found a Caregiver QOL questionnaire with eight domains of “quality.”  Of course it was from England – they seem more aware of the importance of caregivers than the US.  The domains were support for caring, caring choice, caring stress, money matters, personal growth, sense of value, ability to care (competence) , and carer satisfaction.  I didn’t take it.  I could tell by the questions I’d come up with a pretty lousy quality of life by their standards

The domain about personal growth annoyed me.  Not only am I supposed to meet all the patient’s needs but I am also supposed to grow and learn from it?  Really?  Just lay another responsibility on me!

Here are some of the things that come to mind as I think of what influences my quality of life:

  • how many moments of a day can I feel joy, or laugh
  • has Larry smiled today
  • how much do I feel loved
  • do I feel valued by the patient and family and health care system
  • how many social interactions with the patient do I have (not just caregiving interactions)
  • how many social interactions with people other than the patient do I have (could just a visit or just saying hello while walking the dog)
  • weather
  • do I/we have time and energy to do something interesting
  • how much risk do I feel while caring
  • do I feel cared for
  • level of freedom from caregiving
  • weight of other responsibilities – house maintenance, bills, etc.
  • how much family and friends see and understand and care about my situation (not only the patient)
  • how much sleep am I getting
  • how loving do I feel
  • how hard or easy is navigating the health care system to meet the patient’s needs

I won’t add how hard or easy is navigating the health care system to meet caregiver needs because I haven’t found anything in the way of support for me, except the respite care offered through hospice.  Oh, and the nurses did bring me coffee in the hospital.

I feel like I’m missing something in evaluating the quality of my caregiver life.  Anyone know what that is?

Solo Caregiver

Original painting about changing your attitude toward being a solo caregiverAs of today, I am now a solo caregiver again.  We took Larry’s brother to the airport this morning.  He wanted a “drive-by” drop off because he knew it would be emotional and it was.

We haven’t been alone in the house in about 50 days, because of the people who came to visit and help  before he went in the hospital and those who have come to help since.

I’ve been worried about this day for weeks.  Others have worried for me.  Yes, Larry is greatly improved since his hospital stay.  He only needs two breathing treatments a day.  But he’s weak.  And his disease progression makes it impossible for him to do any of the ADL’s (activities of daily living) alone.

In retrospect that worry was wasted worry.  I was borrowing worry – stressing in the past about something that was happening in the future.  Stressing about being overwhelmed by so much on my shoulders (literally – as he puts his hands on my shoulders to balance, and figuratively.)

I’ve decided to change my attitude.

I read that happiness is 50% your nature (your genes), 10% your circumstances, and 40% your thoughts, attitudes, and actions.    I found a happiness survey online and took it.  Turns out on a scale of 1-5 I’m at 2.83.

But hey, I have a 40% chance to feel happier, right? It’s only 10% circumstances.  I can improve my quality of life, myself.

I took another look at my circumstances, at my solo caregiving life.  (Maybe my gratitude list helped, too. )  I’m looking at my thoughts, attitude and actions.

Thoughts:  In a whole day, how many minutes am I actually caregiving?  Not all that many minutes compared to the whole day.  Of those caregiving minutes, how many are doing things I find distasteful and how many are either neutral or enjoyable?

Most of the day is fine. I enjoy quiet time with Larry.   Yes, there are a lot of caregiving interruptions, but just a few minutes.  When I was a business person my day had loads of interruptions.   Yes, I’m very tired at night, but so what?  When I wake up tomorrow the sun will shine and I will be rested.

I don’t need to let the moments of caregiving dominate my thoughts all day.

Actions:  Yes, there’s a physical reality here.  He needs a lot of help to move from bed to wheelchair to recliner to wheelchair to toilet, etc.  With the hospice CNA coming two days a week for his shower, at least I don’t have that transfer to do alone.

We have a physical therapy consult tomorrow through hospice to see if there are more efficient ways for us to do the transfers so maybe that will help me be a safe solo caregiver.    Maybe having his hands on my shoulders as we take a few steps isn’t a good idea because it raises my center of gravity and puts me off balance.  Maybe they can show me another way so I don’t have so much weight on my shoulders.

Attitude:  In some ways, I’m looking forward to being alone with Larry again.  It takes effort to have people in the house.  It multiplies my need to respond.  Now, I’ll only have Larry.  I don’t have as much to take away the focus my attention. (Although alone is relative because we got home just before noon from the airport and then the hospice social worker came, and now the hospice massage therapist is coming.  And tomorrow is the physical therapy person.  And Friday is the CNA.)

Okay, so I’m a solo caregiver again.

But I’m not alone.  Larry’s here.  We can go back to being a couple.    With lots of support.  From people who live in their own homes.  Our home is our own, again.



Heavy Time and Gratitude

Time is weighing heavily.  We have minutes and hours and days to measure the distances the passage of time.  The measures are failing me.

I don’t know how to use my time, how to feel about my time in any given day.  I’m both bored with too much time on my hands and stressed with too little time – AT THE SAME TIME!  How is that?

My time is out of my control.  My time is unpredictable.  My time is non-rythmic (is that a word?).

I generally think of time as linear – if you visualize it the past is on the left, then the present, the future on the right.  I believe that Asian cultures who read right to left see their timeline reversed, with the past on the right, the future on the left.  When I worked in Alaska I was told that many of the Alaska native tribes envision time as a circle with the past, the present, and the future always around you.

I see only the present.  No future.  No past in a way.  Neither is relevant to our present.   How much time do we have left together?  A day?  A week?  Many months?  He wants the hospice doctor to tell him.  I want to have enough left in my reserve tank to help him through.   How much time?

In any given day, I know I will wake up around 7:15 (because if I don’t the dog jumps up on my side of the bed and bats me with his paw.)  I know Larry will wake as I get dressed and will want help with his catheter.  Then I feed and walk the dog.

After that, who knows?  Larry might need a breathing treatment in bed.  He might want to go back to sleep right away.  This Tuesday the hospice CNA called at 8:13 and said she’d be here at 9:00 (though I’d asked for a late morning shower for Larry as he sometimes doesn’t wake up again until 11.)

I treasure that quiet time alone before he gets up. I’ve always treasured that early quiet. I make a cup of coffee.  I meditate, write, look out the window at the early sun and the long shadows.  Now that he’s so weak, I dread getting him up – NOT having him up.  It’s the heavy wrestling to get him from the bed to his wheelchair, get clean clothes on him, etc.  Once he’s up the hard work is over.  It’s just little things that come unpredictably, whether a glass of water or a new symptom.

I can’t really leave for any length of time or start anything that can’t be left.  I do some chores, empty the dishwasher.  He wants the bathroom.  I keep checking to see if he’s done.  I get his pills ready, his coffee ready.

Finally I can help him clean up and get dressed.  And the day for us starts.

I know I should do my back exercises but I don’t have the energy to make myself get down on the floor.  I do a little painting, but have to stop to help him wipe his hands after he finishes breakfast.  My painting is awful.  Where’s my coffee? Where are my glasses?  Did I take my pills? Where’s my phone?

Then he needs nothing for hours, so what do I do with myself? I didn’t know I’d have this time.

Then I have something I need to do and I can’t find the time.

Okay, I’m sick of complaining.  How much worse it all is for him.   And he never complains.

I’m going to work on gratitude.  Ten things:

  1. I’m grateful that the mornings are almost always sunny.
  2. I’m grateful that I get to have mini-visits with neighbors who are out when I walk the dog and they are all very caring and give me hugs.
  3. I’m grateful we have the dog so I have to get out of the house for at least two walks a day and two other quick outings.
  4. I’m grateful we live in a beautiful neighborhood with wonderful people who are making dinners for us every other night.
  5. I’m grateful we have three fabulous kids who love us and check in regularly, caring family, along with many many friends.
  6. I’m grateful we don’t even notice the heat because we have air-conditioning that works well since we replaced it two months ago.
  7. I’m grateful my brother-in-law has been here to help for a month (he leaves on Wednesday.)
  8. I’m grateful I am healthy.
  9. I’m grateful that except for his Multiple System Atrophy, Larry doesn’t have any other health problems or any dementia.
  10. I’m grateful I have a book to read next to my bed that I haven’t read before.

Our New Normal?

Original painting with quote about adjusting to our new normal by soaking up the sunshineFor the last few days we seemed to have achieved our new normal. I say that hesitantly with the hopes of not jinxing it.

Larry’s breathing is much better – pretty clear, actually.  He sleeps quietly through the night.  Yesterday, he even did some small exercises for legs and arms in his wheelchair.  He’s been able to support his weight for a brief time so I can help him with the transfers.

He’s struggling mightily with the mechanics of eating but we  mostly manage to figure out something for him at each “meal,” although I’d guess he’s still losing weight.  And every pound he drops I put on with stress eating and all the good food people keep bringing us.

Even more important, he is rating his quality of life higher.  Yesterday on a scale of 1-10 with 10 the best, he rated himself a 6!  For awhile, before he went in the hospital, he was mostly at a 3.  Did it take a brush with death to make him appreciate life more?  How long will our new normal stay a 6?

There is even some relief for me from the relentlessness of constant personal care.  He finally agreed to having a CNA from hospice help him with bathing and grooming.  She came for the first time yesterday.  She was efficient and quick and he said it wasn’t uncomfortable at all.  Gave her two thumbs up when she asked.

So why don’t I feel better about it?  I still have the sense of a guillotine above our heads about to fall.    Sunday, as my brother-in-law is still with us, I asked our friends Michael and Pam to take me out on their boat for a short ride.  It was a beautiful morning, they brought fruit and muffins, and the water was calm.  I enjoyed myself for a few hours.  But when I came home it was a taste of being that third wheel, alone without Larry, that it made me sad.  .

Somewhere I read that there are people who need to come close to death multiple times – that it helps them prepare and become more comfortable with death.   Maybe I need that, too.

I don’t know what’s coming.  I can’t know what’s coming. I have no control. I can only be in today.  I can only enjoy the sunshine while we have it.  I know there will be dark days to come, but not today.

I want to settle into some kind of rhythm for however long our new normal lasts!

Funeral Choices

Original painting of a fish with a quote about going with the flowI think I just realized that funeral choices are all about our beliefs about death.  Duh?

Larry and I have been talking about his funeral.  Not that it’s imminent, mind you, but we have to tell hospice who to call.  It hasn’t been the maudlin, sad discussion you might imagine.

It’s been an argument.  Well, if I am brutally honest, not really an argument – more me trying to talk him out of his wishes.  Sounds mean, doesn’t it?  What can I say?  We feel very differently!!!  I want a balance between what we want, and he wants it his way.  Of course he does …. it is his funeral, isn’t it?

I’ve never given funeral choices much thought. I am working to get a perspective to help myself feel more comfortable with his choices, so I am trying to contemplate how we differ in our views of life, God, and what might or might not come after.

I’ve also looked further afield (more Google research) at how others resolve funeral choice differences. Often it comes up as children disagreeing with one another about their parent’s funeral.  I also read about one couple where the husband wanted to be cremated but the wife was a post-Holocaust Jew and the idea of cremation was horrific to her, as you can easily understand.

Strangely, what was particularly helpful to me was reading about how different cultures treat death and funerals.  Like the eastern Indonesians that save up years for a lavish funeral and in the meantime keep their dead loved one in their home, symbolically feeding them.  Or the Malagasy people of Madagascar who dig their loved one’s bones up every 5 or so years to visit with them and get their blessings.  Even colors of death are different – sometimes black, but also white, or even green(in South America).

I particularly liked the idea of some Vajrayana Buddhists who believe that in death the soul moves on while the body becomes just an empty vessel, so they chop it up and put it on a mountaintop for the elements (including vultures).  It’s called a Sky Burial and apparently the majority of Tibetans still choose it.  While it may sound a little ghoulish to some, think of how ecologically sound it is – there are no chemicals used, no land to set aside for cemeteries.  In South Korea, because of dwindling graveyard space, you have to dig up a loved one’s grave after 60 years.

I don’t believe in the classic God figure, heaven, or an afterlife.  I kinda wish I could because it would be very comforting, but you can’t make yourself believe in something.  I believe in universal energy and when I die I just go back to being part of that energy.  So when I’m dead, I’m gone and there is no longer any separate me.

Therefore, the funeral isn’t for me – it’s for the living , whatever they want and need.  Have a New Orleans Jazz Funeral, throw my ashes in the sea, put my body on a mountaintop, or turn me into compressed beads, like some South Koreans who don’t want to have to dig up their loved one in 60 years.  Okay, I do hope they don’t keep my body in their living room for years, even though in our family I remember my mother talking about her grandfather being “layed out” in the living room.

My brother-in-law, Jimmy, who is staying with us for a few weeks to help with Larry, hates the idea of no burial location, no gravestone.  He wants ensuing generations to have an actual place to go to see their ancestors and loves old cemeteries.

I have a friend who wants a Green Burial.

Reading and thinking about such extreme differences in beliefs and in funeral choices actually makes the distance between Larry’s view and my view become so much smaller.  He believes in a traditional God, Heaven, and an afterlife.  He wants to preserve his body for that, say goodbye to his son and friends in the location he spent most of his life in, and be buried alongside his family in the family plot in York, Maine where he was born.  That makes sense to me now, given his beliefs.  I can go with it.

I’ve just realized the funeral has become a brief moment of time that is a concrete location for my angst to fall. The cost brings up my irrational but lifelong “bag lady syndrome” fears about money, and the thought of sitting by his open coffin  brings up my porcupine-like prickly way of protecting myself from pain.

I remember being pregnant with my first child and concerned that so much focus of the pre-natal courses we were taking were about labor and delivery.  After all, no matter how painful the birth was, it was likely going to be over in 4-48 hours.  Creating a new life with this new infant was really going to be the hard work.   How would I manage?

No matter how painful the funeral, it will be over in 4-48 hours.  It’s creating a new life without Larry that will be the excrutiatingly painful hard work.  That’s really what I want to protect myself from.  How will I manage?



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?





What to do with Hope

Original postcard with quote about 1000 reasons to despair I had coffee with a grief counselor yesterday and asked her what to do with  hope that comes unbidden when Larry has had a good night or two (or four as of today!!!)

She has many years of experience as a grief counselor and also as a full time caregiver to her husband in his late stages of Parkinson’s Disease and she is very wise.  She asked “what are you hoping for?”

I thought about it.  “More comfort for Larry.  Less gasping for air, less throat spasms.  Maybe even a reprieve from this pulmonary crisis for awhile, you know –  more good days.”

She smiled and gave me the best answer.

“Don’t try to manage it.  We all need hope.  Where would the human race be without hope?  You need hope – just to get through the days.”

She reassured me that my hopes were reasonable, tied to reality.  I wasn’t hoping for him to recover from his Multiple System Atrophy.  I wasn’t hoping for a cure.

I’ve been worried about my hope, my momentary relief and joy, when we have good hours, good nights.  That I was fooling myself.  That I was wanting the impossible.  That I needed to TAMP IT DOWN!

She said I needed hope to keep going.  But that the days would be up and down, up and down.  I had to take my sleep and my hope when I could get it and not expect things to be normal for a long time.  Not even a new normal.

I guess I worry that hope makes despair all the more painful.  That hope will inevitably cause disappointment.    Of course, disappointment will be the least of the pain I feel.  It’s just another shade of grief.  Perhaps hope is the space in between those moments of grief.

I asked Larry how much time he thought he had.  He shrugged.  “A day?  Two years?”  I asked if his body felt like he had two years and he said no.  “Maybe 6 months.”

“What is it that makes a day worthwhile?” I asked him.  “You, family,” he answered.”

So my hope is that his days are worthwhile.  That our days are worthwhile.  That we can find the moments in the hard days that are worthwhile.   That I don’t have to do anything with my hope – we can live with hope, and cope with whatever reality brings us.