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What is a caregiver vacation? Vacation: a period of suspension of work, study, or other activity, usually used for rest, recreation, or travel.   Good travel, but where’s the rest and relaxation???

Just three hours away  from home, but we have different walls, different views, different noises and smells.

The waves roll in below us, hypnotic in their unceasing movement and rhythmic noise.  The sky is huge  – colors and textures ever-changing from blue with huge white puffy cotton ball clouds on the horizon to dark threatening clouds.  Even a long descending black waterspout, stirring up the water to white froth where it met the surface.

Facing the east, we see morning sun breaking the horizon, ascending out of the ocean.  We also benefit from prevailing easterly winds, allowing us to sit on the balcony once the sun rises enough that we are in shade, even though the temperature is high and the air is heavy with humidity.

I’ve had a few moments to paint the changing scenery and even took a jacuzzi while Larry watched football.

We’ve had some gliches.  I expected some bumps, just not the ones we’ve had.  Another lesson in letting go of expectations.

I realize why I don’t ever want to live in a high rise.  I have to wait for an elevator, and the stops for other floors, then walk through several courtyards to get out to walk the dog.  Four times a day.  He loves all the strange smells but his walks takes forever.

There was the cranky admissions hospice nurse who hated the dog, the problems of hospice delivery people finding and getting into this building which is on top of a public parking garage.  There was the frozen and leaking refrigerator, and the dog peeing on the bed.  There was the loud and awful karaoke the first night echoing in the public courtyard at ground level.

And then there were Larry’s problems.   The bad part of a caregiver vacation.

His bipap machine for sleep apnea has long tubing which is humidified.  Water kept condensing in it, making it gurgle and waking Larry up, which woke me up.  After two nights of this I had to call our home hospice nurse to call the respiratory therapist who called me to help me recalibrate it.  Apparently being by the ocean provided enough humidity.

The second night he choked on dinner.  Turned gray, and passed out, smacking his head on the table as he fell over.   I had to drag him to the floor (hitting his head again) to do Heimlich and chest compressions yelling “I don’t care about your DNR, you’re not dying on our vacation!!!”   He finally started breathing after what seemed like an eternity.  I called the front desk to help get him back in his wheelchair and hospice to come check him out.  He had no recollection of it and was joking and asked for dessert. I was a basket case.

The first few days his breathing was a lot better than home.  We figured it was getting away from the airborne toxins of the red tide.  The last two days his breathing has gotten worse again.  I heard in the elevator that the red tide has migrated around to this coast with the ocean currents.  Really??? It followed us??? I was wondering why I had been coughing on the dog walks.

The last two nights his breathing has been so loud and shallow even with the bipap machine and oxygen on, and he’s had full body twitching. Is he not getting enough oxygen?  I checked the hose for kinks or leaks.  Are the bipap machine settings off?  Is he dying?  I couldn’t sleep with worry, the noise, and the shaking of the bed.  Last night at 1:30 AM I called the respiratory therapist and asked for help.  She couldn’t offer any solutions but she was a friendly voice in the darkness.  I finally gave him a small dose of morphine.  I wanted to give it to myself.  I listened to a meditation on my computer instead.

Late yesterday I asked how he was feeling, from 1-10.  He said a 7.  He hasn’t been higher than a 5 and mostly 4’s in a very long time.  I asked how come and he waved his arm toward the ocean.  We were sitting on the balcony.  “All this,”  he said.    Pretty cool.

He’s still sleeping this morning.  It’s my birthday.  I bought myself a chocolate croissant and coffee when I walked the dog.  This is a caregiver vacation.  It’s not restful, but it’s still vacation.

We’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.

 

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?

As 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.