Respite Care from the Patient’s Viewpoint

Larry is home looking at Christmas cardsPart 1 and Part 2 of my perspective on the healthcare professionals with whom we engage was from my point of view and today I want to present respite care from the patient’s viewpoint.  Larry went into respite care for five days so I could get some good nights of sleep and some time to restore.   He was willing although not thrilled about going.  “I had to psyche myself up before I went,” he said today.

Overall, his experience mirrored mine in some ways – they are mostly set up for bed bound patients.   He said “it was so quiet – too quiet.  I was the only one out of my room.”

“The food was pretty good,” he said. “I could have an ice cream sundae whenever I wanted.”

“Most of the nurses were good, but one didn’t listen to me.”  That particular nurse didn’t listen to his explanation about how to use his catheters and made it more complicated and less comfortable for him.  (I had been told they mostly see indwelling catheters, not the disposable straight catheters we use.)

She also didn’t listen when he told her there were two parts to his Bi-Pap machine face mask.  She started with only the hard plastic part that attached to the tubing and didn’t use the part that goes against his face with the soft silicone gasket.  So by the time she realized what was wrong, he had a cut on his nose from the plastic.

I couldn’t figure out why his hair looked so bad when he came home until he told me they’d only given him one shower in the five days and even then they only put water on his hair with a washcloth, they didn’t wash it with shampoo.  Plus they only shaved about an inch on each cheek and left the rest of his face to go to stubble.

He ate all his meals alone at the dining table in the common room.  Two musicians played the first day and he was the only one listening.  The volunteers were great, but overall it was just too depressing.

I just asked what would have made it better.  “Not going,” he said.  “It was  a place where people go to die.  People were crying.   There were rooms with whole families surrounding the patient.  There was a group of about 20 people that took pictures in the common room.  I was probably in their picture.”

That’s my Larry – photo bombing someone’s funeral picture.

In retrospect, we intellectually know that’s what a hospice house is for.  It’s to take care of people at the very end of their lives.  We should have expected what he experienced in respite care.  But the social worker and the nurse were SO encouraging.  They led us to believe it would be fine, he’d even enjoy it.  They didn’t talk about how different a situation he was in from the other patients. That’s where the disconnect was.

Painting the family roomI did get some good sleep. I also painted our dark family room a light color and we’re both enjoying the new look.  I feel so loved that he was willing to endure the respite week to take care of me.





What I Want from Healthcare Professionals, Part 2

Yesterday, I talked about the gap between where my head is at as a caregiver and where the healthcare professionals’ minds seem to be. Because of that gap, these last five days of respite care resulted more in emotional trauma than rest for me.

Original painting of an angry state of mind

Disconnects started immediately. Our nurse comes in our front door where there are stairs, so without asking any questions, she sent five men and two transport vehicles to take Larry to the hospice house. She never asked if we had a ramp. I don’t know how she thought I took him out in his wheelchair. After I showed them the wheelchair ramp, four guys and one vehicle left.

I followed them to the hospice house to help him get settled, even though she said I didn’t need to. I was glad I went because the nurses had never seen the Cough Assist machine, one of his required respiratory treatment devices. I had typed out some information about his disease along with an example of how we spend our typical day. I explained the equipment, the list, answered their questions, then visited a bit with Larry. I also had to correct their list of meds which had many errors. My goal was to help them help him have the best stay possible.

It was SO hard to leave. I felt so guilty. So sad to leave him in that depressing environment. He watched me walk out. AHHHH!

On the way home, I received a call from the hospice nurse who’d received a call from her clinical supervisor who’d received a call from the nurses I’d met with. Instead of empathy for what was so difficult for both of us, and appreciation for providing useful information, I was chastised for the detailed list I’d prepared which they felt required “one on one nursing care.” I was told they weren’t set up for that.

My heart started racing. If the nurses had had concerns, why didn’t they tell me while I was there? Why not ask questions of me then when I could have answered them, or I could have taken him home if they weren’t prepared for his situation? I had assured them the information was just the way we spend our days at home, not a schedule.

Our hospice nurse didn’t listen to me. She didn’t seem to care what the emotional impact of her comments were on me. She didn’t care about where I was coming from. She had an agenda from her supervisor. She just kept repeating to me that I had to tell her I was confident that the nurses would provide good medical care their way.

I was worked up by the time I got home to an empty house. Then the phone rang. It was the hospice house clinical supervisor telling me they couldn’t provide “one on one nursing care” and didn’t know if they’d be able to do all his respiratory treatments with the cough assist, because they’d never seen it before, and didn’t have staff or volunteers that could help him with his daily exercises.

I was furious. So much for rest and relaxation. I was ready to jump back in the car and get him but it was 8 PM and he was 45 minutes away (which was another unpleasant surprise of the day – I thought he’d be going to one of the hospice houses only 10 minutes from our home.) I told the supervisor I’d drive down and take him home the next morning if they couldn’t use the equipment. So much for the reassurances from our hospice nurse that they’d just “follow his plan of care.”

The next day they were, if fact, able to use his equipment, and I received a call from another nurse thanking me for the helpful information I’d provided. But it was hard to unwind the damage to my headspace. I was guilty, I was angry. I didn’t have much confidence.

I visited a few days ago. It’s a horribly depressing place. It’s drab, it’s brown. It’s full of ugly drab brown art – someone’s idea of death?

I found out that he was the only patient there who was NOT bedbound. No wonder they thought he was going to be a lot of work. Those nurses were used to a different type of patient. They weren’t prepared for where we were. And we weren’t prepared for where they were.

I told him I’d take him home that afternoon, that he didn’t have to stay. He said no, he’d “stick it out.” That’s love. He was doing it for me.

If we’d had clear expectations of how it was going to be, we wouldn’t have done it. If the social worker and hospice nurse had asked about our concerns about respite instead of making assumptions, they might not have encouraged us to do it.

He’s coming home in an hour. I can’t wait. We won’t do respite again. Not there. Not in that way.

What I Want from Healthcare Professionals

What I want from all the healthcare professionals we encounter seems to be too much, because I don’t get it from most of them. I assume clinical competence. I hope for emotional competence.

Hand drawn postcard

I get assumptions rather than questions. I get excitement about diagnosis but not compassion about its impact on us. I get intimidation and scolding rather than appreciation for sharing information. They seem far more focused on where they are rather than where we are, on what’s important to them rather than what’s important to us.

An acquaintance from a Parkinson’s support group recently called to ask if we liked our neurologist. She and her husband were unhappy with his doctor. We’d had his doctor and left the practice. That neurologist was very pleased with himself, with having a community reputation for his diagnostic abilities.

Larry was frustrated with the Parkinson’s meds not working and that same doctor offered up the possibility of a potential ALS diagnosis. He seemed intrigued with the possibility and potential satisfaction for getting a diagnosis right, but showed no compassion about what that might mean to us!

Then there was the hospice social worker who called three times without identifying himself other than a first name, and then proceeded to insist on coming to visit Larry early in the day, though in our chart it asks for afternoon visits only. I explained that Larry sleeps until 11. He said he’d come at 11. No, I explained, he needs to dress, eat breakfast, and have his respiratory treatments. He said he’d come at 11:30. No, I said, nothing happens that fast here. He proceeded to get angry. His goal was to check off appointments on his list, not help us. Rather than offering support, he completely irritated me.

Most recently was the disconnect between my concerns about Larry going to a hospice house for respite care and the assumptions the hospice nurse made. Also, the scolding I received for the information I provided when Larry arrived at the hospice house.

My concern was his quality of days at such a place, and my guilt that it seemed to be a selfish thing to ask of him so I could rest. Our hospice nurse thought I was worried he wouldn’t get good medical care in case of emergency. I was worried he’d have a miserable lonely time and they wouldn’t understand his disease. She assured me they were highly competent nurses. They’d know all about his equipment and could just follow his “plan of care” on his record. I wanted to bring him there and get him settled. She thought he should go by medical transport.

See any disconnects? Tomorrow I’ll share the result of those disconnects.

Good Days

Seems like every few months we run out of good days and I get overwhelmed – the tight ‘I can’t do this anymore’ feelings.  Then something happens that loosens me up.  It happened again this week.

Last week we had a number of wheelchair problems.  He drove holes in the wall with his footplate.  He drove off a path at a sculpture garden, taking out several bouganvillea and miring his wheels in soft dirt.  He thought he could walk to the bathroom with the walker when the wheelchair was having technical difficulties and couldn’t so sunk to the floor.  “I can’t do this anymore,” I told him.  “We have to look for a facility for you to live in.”

And then several nights ago he had a breathing attack in the middle of the night.  I finally woke up and curled up next to him with my head on his shoulder and my hand on his chest.  He relaxed and somehow so did I.

This caring for someone is sacred work.  I don’t even know what that means but it’s somehow very important.  Yeah, there’s all the medical stuff we have to do, all the advocacy (even with, maybe especially with, hospice.)

But the really important work is how do we have a good day.  How can I, as a caregiver, make this a good day?  How can we continue to enjoy life?

Dying slowly is hard work.  But what’s better?  Dying fast?

We had a stark comparison as my ex-husband, my kids father, died recently from injuries sustained when his cycling group was hit by an elderly driver.  He never woke up.   Brutally hard for all who loved him, including me.  But what about for him?  He loved cycling.  He had retired early and found a new outlet for his younger athletic passion, and a new group of buddies to share it with.   He died, it appeared, having a good day.

Larry can’t act as fully on what were his passions.  But we try to get as close as possible.  Being outside.  Cooking – the new hospice volunteer loves to cook and they made an amazing roasted red pepper goat cheese lasagna this week.  Sports – he still plays in his fantasy football league.

We don’t know how much time he has.  Just like my ex-husband, and just like all of us,  we don’t know which will be the day he dies.  I want him to die having had a good day.

That means my caregiving work is primarily about good days.  That makes me smile to write it.  That doesn’t mean it’s easy.  It’s never easy.  But it does change my perspective.  We can both have good days.