Category: Quality of Life

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.

 

 

We’ve had two good nights and more than a few good moments during the last two days!  Hurray!

The parade of hospice help has been both exhausting and greatly helpful and when they heard how hard our nights were, they were horrified we hadn’t called them.  Who thinks of calling any medical type help at 2 AM?

They sent us an upgraded machine for Larry’s sleep apnea – the problem of stopping breathing as you sleep.  He’s had the condition for four or five years (frequently goes with MSA and Parkinson’s) and has used a CPAP machine which pushes air into his lungs to compensate.   But with the current lung problems and congestion, it hasn’t worked well for him.  The new machine is a BiPAP – which more closely mimics normal breathing.  It’s helped so much he didn’t even need oxygen last night.

The sleep neurologist we saw yesterday said that BiPAP’s are much better for the problem but more expensive so the insurance companies have you try a CPAP first.   If we hadn’t been on hospice, it would have taken sleep studies and multiple office visits to confirm to Medicare he needed one.  But one phone call in the afternoon to the hospice nurse and it was delivered that evening.

Good nights mean better days.  The sky was this gorgeous blue today with big puffy clouds, and the sun created strong shadows in the yard.  We got Larry in the pool, and he and his son had a Hallmark moment playing a bit of catch with a water ball (with me helping with balance).  We even went out for ice cream – orange sherbet and vanilla swirl at an orange grove.

He’s not eating much but he definitely enjoyed the ice cream and he’s still enjoying watching the Red Sox games on TV.  How nice the team is doing so well!

Two children have left for their homes in Seattle and San Francisco, the other leaves tomorrow with his wife for Massachusetts.  They were AWESOME to have around during this crisis time – working as a team to solve every problem for us.  There was lots of laughter and love – many more than a few good moments!  They even did an intervention with me to make sure I got support for myself after they left.  It’s hard for them to leave and hard to have them go!!!

The strange thing is that the few good moments feel so normal, it almost catches my breath. I savor them for what they are!  They lift our spirits and fill the well a bit.  We wish for more.   Hope lingers amidst everything.

 

 

People seem impressed when we get out and do things.   But it’s a way to maintain a certain normalcy in our relationship, and in my life.

We’ve gone to a Patriots game  – I borrowed a wheelchair because he was only using the walker at the time.  We’ve gone to museums like the Dali Museum in St. Pete where they have wheelchairs to borrow at the entrance, and the Thomas Edison and Henry Ford houses in Ft. Myers, where we just took lots of breaks and didn’t see everything.

We do smaller things like taking the old golf cart down to our park to watch the sunset with a cocktail.   Or bringing sandwiches with us to the beach and just sitting in the car eating while we watch the sights.  Some days I help him into the pool and he leans up against the far wall.  I stand close and we play catch with a floating ball, laughing at all the misses and all the splashing.

For the 4th of July we went to Selby Gardens, right on the water in Sarasota, for their Extravaganza Cookout.  He had seen it in the paper and wanted to go.  We made reservations (expensive, as it was a fundraiser) and invited another couple.

It’s pretty exhausting just to get ready to go.  Feed and walk the dog.  Get Larry into the shower.  Help him wash his hair and shave.  Dry and dress him.  Brush his hair (he’s very careful about his hair.  He’s got a great head of hair.) Deodorant.  After shave cologne.  Eczema cream on his nose and ears.  Shoes.  Into the wheelchair.  Get his glasses.  Get his sunglasses.  Get him something to drink.  Be sure we have an extra catheter, kleenex.

Then I shower, wash and dry my hair, dress, do make up and find jewelry,  shoes.  Is it worth it, I wonder, at this point?  I’m exhausted!

We picked up the other couple and headed into town, watching the clouds roll in.  Just as we arrived at the Valet parking stand the sky opened and the deluge began!  Luckily our friends are chill and we all sat in the van for about 15 minutes.  Even the valets disappeared because of the lighting. Finally it let up and we managed to get the van situated so the ramp would extend beyond the river that was now the road.   Into the building we went, all soaked in spite of umbrellas, but laughing the whole way.  What the heck?  It’s warm in Florida in summer.

Eating out is complicated now.  We kept rotating the table to find a way for him to roll up and fit his knees under it.  Then I filled two plates at the buffet, considering which foods would be safest and easiest for him to eat.  Our friends have seen him eat and know I often have to put my finger in his mouth to move the food around for him, and that he sometimes drools. It’s not always pretty, even though he’s still a handsome guy. I wondered what the couple who sat down at our table thought.  I noticed them glancing over then looking away.  I didn’t much care one way or the other.  They were friendly and so were we.

The rain finally stopped and we were able to meander around the gardens.  He  missed the path at one point and rolled into the dirt, but our friend pushed and they easily got back on track.  For some reason, Larry was completely tickled by the moment and seeing him laugh made the rest of us laugh!  We arrived back at the waterfront in time for the fireworks.  Of course Larry had his wheelchair so he was comfortable and we just stood around him watching the display and listening to the patriotic music from the speakers behind us.

These are the moments, the big ones and the little ones, that make all the effort worthwhile.  We are a couple.  I am a person, not a caregiver.  A wife, not a nurse.   For these moments the symptoms, the trouble, the terminal diagnosis, all recede into the background.   We are people with friends not people with a disease.

It may be exhausting to go out and do things, and I may not always feel like I have the energy to make it happen.  But it is always worth it!!!

We celebrated our 22nd anniversary last Friday.  Larry wasn’t feeling great.  We had talked about going to a favorite restaurant for a late lunch/early dinner and then to a waterfront bar for a drink, but were contemplating staying home.

I encouraged us to go, even though I barely had the energy.  I figured this might be the last one we got to celebrate.

So I showered and dressed, helped him shower, shave, and dress, and off we went in the wheelchair van, several hours later than planned.

I’m so glad we went.  We found easy parking for the van.  We chose from the menu carefully so I wouldn’t have to dislodge food that got stuck in his mouth.  We sat at a table with lots of people-watching so the normal lack of conversation between us due to his speech challenges wasn’t troublesome.

He made a toast with a wry smile.  I had to ask him to repeat it 3 times before I got up and leaned toward his mouth to hear.  “I hope the next 22 years are as good as the first 22.”  Hmmm.  If only…

When we’d finished eating the restaurant was far more crowded and navigating the path through the tables and chair was challenging in the wheelchair.  Most people got up and moved their chairs out of the way, but one young woman didn’t bother and Larry clipped her chair as he went by and his wheels carried her chair and her along with him.  She wasn’t happy.  I thought it was kind of funny!

After dinner, we drove over to the waterfront bar in a big hotel. They took good care of us and we sat side by side, he in his wheelchair and I in my rattan chair.  He had a rum and ginger, I had a Prosecco.  We watched the sunset and held hands.  It was as romantic as all the other anniversaries.  We came home smiling.

But then he had a breathing slog – when the phlegm gets thick and lodged in his throat and his breathing is shallow and gurgles with each intake.

I got him a hot moist cloth to breathe through, massaged his chest and neck, and then gave him one of those pillows with the seeds in them you put in the microwave for his chest.   It’s frightening for us both, what I do isn’t really useful except in making me feel like I’m trying, and it underscores the helplessness I feel in the face of this disease.

He goes to bed with his heating pad and his CPAP breathing machine, saying “I love you” just before I situated the facemask.  “Did you say that in case you die during the night?” I asked.  He nodded.  Romantic, right?  NO – then I wasn’t awake all night listening to be sure he kept breathing.  We laughed about it in the morning when I told him I’d consider myself loved if he’d stop telling me just before sleep.

Days later, though, we talked about the insidious emotions – the jealousy we feel toward other people who can do what they want, enjoy life without these challenges.  We both feel so angry at times.  It’s hard not to.

So I have to keep trying to get us to experience those more humorous, enjoyable, and even romantic moments, even when I don’t feel like it.  Even a drive around the neighborhood in our ancient golf cart so we at least get out of the house helps to chase away the dark times.