March 2019 - The Artful Caregiver

Dying is a Pisser

There are not enough tears so why bother to cry! I was reading a book called Being With Dying and the author quoted a dying person as saying “It’s not death that’s hard, it’s the dying that’s a pisser.” Oh, yeah.

The last few days have been the worst. He hadn’t pooped in many days but had hardly eaten and had no discomfort. At first I wasn’t worried, but just in case, I asked the hospice nurse just to check him out Friday morning at 9 am. I so wish I hadn’t!!!!!

That check resulted in an enema that just hasn’t stopped giving. The nurse left at 10 am saying it might take til the afternoon. HA! Today, 53 hours later, we are still in a “go” mode. He’s spent his first days stuck in bed, mostly half or fully asleep, so very weak. In retrospect, this was too aggressive to do to an MSA patient.

Thankfully, his son Cody arrived Friday. I couldn’t have done it alone. The worse was not the messiness but the pain Larry was experiencing – stomach cramping, pressure sores being cleaned over and over. His face was in a grimace, the cords of his neck standing out rigidly.

And yet, because it’s Larry, there were still funny moments. When Cody and I did something incompetently in the midst of helping him and Larry snickered quietly. Or when we decided he really needed a shower but we couldn’t make it happen, and I suggested we strap him face down to the roof of the wheelchair van and take him through a car wash. Cody even promised we’d find a “Gentle Touch” carwash. Larry managed to raise his eyebrows.

Cody has a light moment as we care for Larry Then last night as we sat waiting for him to finish his breathing treatment and clean him for the last time before we went to bed, Cody started exploring the Hoyer lift that hospice had delivered. I showed him how it’s supposed to be used and why it didn’t work for us on a carpeted floor and with Larry being so tall. Cody decided to try it for himself.

In he climbed, and up and down he went. Rides at Disney, right?

Cody entertains us on the Hoyer Lift. This all sure feels like one of those rides I have always hated that make your stomach drop out.

And yet, when I can pause and stop doing, stop problem solving, I am able to bring more open-heartedness.

This morning I was reading a quote by Lao Tsu about the value of emptying your head, of non-doing. The doing is the benefit, the being is what matters.

Someone said wiping his ass is CNA work, not a job for a family member. That may be true. And yet sometimes, just maybe it is an act of love. Thankfully, our CNA is as caring and gentle as a family member. Certainly more skilled. We’re learning from her how to help Larry better.

There is a messiness to all of life we like to forget, prefer to avoid. We like it neat and tidy, without pain. Coming into the world is a messy painful process. I guess going out of it is too.Dying is a pisser. And there’s a lot of messiness and pain throughout life, if we are really present to it.

I don’t know if this is Larry’s time to go. Or if he will revive and we will go through this again. I do know there is something for me to learn here.

I do know that I am a part of him and he is a part of me, and a part of many others in this world, who’ve known him, loved him, admired his grace and fortitude throughout his life and throughout this process. When his body goes, today, tomorow, next week, next year – whenever, he will still be within us, within our hearts.

I just have to stay open and be present.

Where Are We Now

So where are we now? I’m on this endless road that goes from paved to dirt, twists and turns, and has absolutely no signposts.

Yesterday was a good day, after a good night of sleep rather than the previous night from hell.

Yesterday, Larry was awake much of the day, rather than asleep most of it. He was able to help support his weight a tiny bit when we did the morning transfer. He wanted an English Muffin for breakfast (which he wasn’t able to eat because he couldn’t move it around in his mouth, but he still wanted it.) He asked for his glasses and the sports page of the paper, (although I’m not sure he read it). His breathing was relatively clear.

Is this an improvement or a momentary blip? He said he was a 5 out of 10. Several days ago, with awful symptoms, he said he was a 5. Perhaps the symptoms don’t determine his state of mind. I almost felt like yesterday was worse for him in the sense that he had more awareness of what he was going through.

I don’t know whether to be cautiously hopeful or worried about what’s coming next. As I type this I think, “just stay in the present, Nancy, you will never know what’s coming next.”

Adjusting to a “new normal” has always been hard, throughout this disease. Emotionally and logistically. Are we in another damn new normal? Are we at the end? How many new normals can I stand?

The impending symptoms of death listed in the book given to us by the hospice are all symptoms of Multiple System Atrophy, things he’s experienced on and off for several years – breathing irregularity and congestions, urinary and bowel changes, body temperature fluctuation, difficulty moving food in the mouth. A visiting friend experienced in hospice commented on his glassy, almost non-blinking eyes and said that’s often an end of life sign but its another symptom of this disease, one that we’ve experienced almost a year.

Moving right along…

Yesterday was a good day in other ways. The new hospice nurse was great! He’s got lots of useful experience and had already read a bit on Multiple System Atrophy before he came. Hurray! He arranged for me to have a liquid version of the Xanax so no more crushing pills in the middle of the night. He lives not far from us so said it would be easy to stop by.

The awesome CNA started five days a week. She can help me get him cleaned up, dressed and moved from the bed to his wheelchair. I’ll hire the same person I had before for at least one weekend day.

Friends came over yesterday. She took me out of the house for a little window shopping in Venice. Her husband stayed with Larry. He also fixed a bathroom faucet and ordered a part for a kitchen faucet. They kept Larry company while I napped, then showered. They cooked us dinner and helped me get Larry into bed.

Larry’s son Cody arrives tomorrow for the weekend. I’m so glad!

I have a patchwork of support that has worked this week. What will I do next week?

We give love, we receive love. We keep breathing in and breathing out, putting one foot in front of another in this very long journey.

What Will Today Bring After a Night from Hell

Original Painting of what comes next What will today bring? It was a night from hell.

We were alone in the house and had a quiet evening watching a Hallmark movie. A friend came over at 9 and helped me get him into bed. We fell asleep around 10:30. At midnight he woke me with gurgling gasping breathing.

Breathing treatments. Gurgling, gasping. Morphine. Gurgling, gasping. Meditating and praying. Gurgling and gasping. More morphine. More breathing treatments. I thought perhaps this was going to be the end. I wasn’t in panic. I just wanted him more comfortable. I held his hand and leaned my head against his. He was hot.

I thought of calling a friend. But what could they do? I didn’t worry about disturbing them. I didn’t call because I wanted to just be quietly alone with Larry in the intimacy of the night.

At 2:00 AM I called the emergency hospice line to see if they could offer any other treatment ideas. I was calm. I got a recorded message and was put on hold for 2 minutes. I hung up. I wanted to just text my questions.

I put Larry’s Bi-pap mask back on him and brought the dog to cuddle under his hands. The breathing problems had escalated by now to moaning in between gasping and gurgling. I called hospice again. More recorded music on 2 more minutes on hold. I hung up. I sang to him. I played music on my phone.

Finally I called hospice again and reached a person who apologized that they were having phone problems. Asked questions. Suggested I crush a Xanax and put it under his tongue. Said they’d call the triage nurse.

I crushed the Xanax. I got a tiny funnel – I have two and had the presence of mind not to use the glass one even though it was a better shape because of the possibility he’d bite it. I brought the crumbled pill and funnel into the room and took off his bi-pap and just stood there feeling helpless.

His body was restless, his teeth clenched. It would have taken several people to get the crumbs under his tongue. I should have asked how the hell I was supposed to accomplish this task? What other ways might I do it. I wanted to text back and ask. I didn’t want to call and be put on hold again.

As I waited the 30 minutes for the triage nurse to call, his breathing finally slowed and his body calmed. I figured the morphine was finally kicking in.

I told her we were okay and she started to ask questions to understand what might have happened to start the episode. Had I just given him liquids? Had he aspirated? She clearly didn’t understand that it was just his Multiple System Atrophy.

So what will today bring? We have a nurse coming soon to check his pressure sores. A new nurse who is replacing the nurse we met last week and told our story to and explained Multiple System Atrophy. This nurse is brand new to hospice. Any hospice. Hmmmm.

I’m glad the pressure wounds will be checked. They are awful now that he’s sleeping so much. At this point, it’s not their medical answers I need. I ordered a medical grade sheepskin to see if it would help. We’ll try that today. But I want not to have to change bandages on his butt. At all!

So many of the caregivers who remain active in the discussion group after their loved ones die talk about the PTSD they experience before and/or after the deaths. What was interesting to me was how many mentioned the pressure sores as a trigger.

Why does treating pressure sores stand out for these caregivers in the long list of horrors we deal with? Is it the intimacy of it? Perhaps. Is it the ugliness, the odors? Is it how painful they are for the patient? Perhaps. Maybe it is also the absolutely tangible visceral evidence of the the deterioration of the body.

Someone asked me whether I was dealing with my emotions. Which ones? Should I be grieving his impending death? But according to the Multiple System Atrophy discussion groups, these symptoms could go on for months. And months.

I can only stay in the present. I’m calm. I’m accepting. I’m exhausted. I’m grateful for my family and friends. To everyone of you who is reaching out by text or message or phone or cards.

In a few minutes I’ll go wake him up and figure out what will today bring.

So Many Emotions, So Very Tired

Moving from Anger to Acceptance Original Painting in Watercolor and Ink So many emotions. We’ve completed the re-entry to hospice. My daughter flew in and has managed all of the details, given so much loving care to both of us. I had to make her go home to her husband, her two year old son, and her consuming career. Now a dear friend is with me. It’s early hours, still dark. I’m so tired.

Larry’s been sleeping or half-sleeping most of the day, some hours in bed, many hours in his wheelchair. He’s drinking a lot, eating almost nothing. He seems calm, only in pain when we move him, and can respond with head nods or finger raises.

Thursday night he had a horrible breathing/gasping/gurgling episode so we were up for hours, then I was up for a few more hours, unable to sleep. Somehow, my anger at hospice started to work its way from the forefront into the background and I felt acceptance seeped into me.

In those dark hours I started to feel part of the web of life, and death. To accept him gradually, slowly leaving his body, over years, now over weeks, days, and hours. I held his hand, I meditated with him. I tried to say the Lord’s Prayer but my muddled brain couldn’t remember the order, so I sang it to him instead – the song a memory from my high school choir years.

The process we’re going through felt bigger than both of us. I felt peaceful, surrounded by the love of our “community of caring” – all the family and friends, old and new, that were supporting us in their hearts and their actions. People reaching out by text, phone, cards, or comments on this blog, people showing up at our door with food. A neighbor I don’t know all that well came over with a list of all the days and times this week she could sit with Larry if I wanted to get out.

My hand made wedding ring broke this week. Such irony. It was so tight I had to have it cut off. That felt like a horrible symbolism, seeing the tool cut my rings in half and I cried. But this wonderful local jeweler fixed it overnight and they are back on my finger, looking all shined up and beautiful.

Many people with Multiple System Atrophy die sudden deaths, their breathing just stops. I used to think that would be a blessing but now I’m not so sure. If things continue as they are, this will be a gentle death for him, and yet not sudden – we get to say “I love you,” many times over.

And of course, he many rally for awhile and we’ll go through this process again. And perhaps again. Multiple System Atrophy is such a cruel disease!!!!!

I’m tired.

His needs have increased so much in just this week. He’s thirsty. He reaches for the cup or tries to roll his wheelchair toward where it sits on the counter. But he can’t drink alone and needs to be given sips of water. Sometimes he can sip through a straw. Sometimes he needs the cup held to his lips. He needs his position changed in his wheelchair. He needs his wound bandages changed. He’s thirsty and wants sips of orange juice. He needs medicine. He wants something but can’t tell us. He’s thirsty. He’s thirsty.

I’m tired.

One day a symptom gets better. Another day, there’s a new symptom. Where are we on this journey? No one knows. There is no knowing. There is no control. Only his needs.

At times I feel such love and such sadness. When someone arrives that hasn’t seen him recently, I see his decline with their new eyes, and am almost stunned by it and want to cry. Other times, I’m angry at him for being so needy. Can’t I just eat my own dinner, instead of giving him sip after sip of water? I’m tired! But he keeps reaching for the cup.

So many emotions. And then there’s a moment in the day where I see the faint glimmer of a smile, the tiny mischief in his eyes as something absurd happens.

I love you, Larry.

Pushed Over the Edge – Back in Hospice

Original painting of purple crocuses, painted while waiting to go back in hospice — Purple is the Color of MSA and March is MSA Awareness Month

Larry is much worse. He was pushed over the edge by the final test to qualify for getting Medicare to cover the replacement of the hospice bi-pap machine. He had to go to sleep with just oxygen and not the bi-pap. That was Friday night. He’s hardly been awake since. He was significantly worse Saturday, and worse Sunday. Now we are back in hospice.

The roughly six weeks since the transition out of hospice have been awful, filled with doctor appointments, trying to replace all the medication prescriptions, replace the respiratory equipment. Constant calls from hospice wanting to know when they could we’d have all their equipment replaced so they could come get it. Multiple calls with the new equipment supplier to explain necessary qualifying tests, to deliver test equipment, to pick up test equipment, to deliver new respiratory equipment.

Then there was the process of getting enrolled in home health, with all their intake examinations with nursing, OT, speech, PT, social worker, telling our story and explaining the disease again and again and again. Then a different set of professionals coming to do the actual treatment, giving us minimal notice of when they’d come, and for the most part, feeling more like intrusions than like help. Hiring help to get Larry into the shower because they didn’t provide that.

Instead of spending our energy finding ways to make the best quality of life for our limited time together, we were just trying to survive the healthcare system. Then just as I thought we’d gotten things in place, our house of cards came tumbling down.

Did kicking us out of hospice save the healthcare system money? Probably the reverse. Instead of a couple of hospice nurse visits and some meds, Medicare had the cost of our multiple doctor visits and home healthcare specialists, new tests, etc. The cost to us was monumental.

Through this weekend of steep decline, I feared the worst, wondering what to do next, who to turn to. Should I notify the kids that things seemed to be nearing the end? Which neighbors could I turn to to help with the transfers from bed to wheelchair as Larry couldn’t support his weight at all and I couldn’t do it alone.

Thanks to amazing friends we managed.

I didn’t want to go back in hospice again. My anger is not just the discharge but their lack of empathy. I’ve received perhaps 8 calls from them looking for their equipment with never an apology or regret or even a “we’re sorry about all this and we hope Larry’s doing well.”

Larry’s doctor called hospice back in yesterday. So here we go again starting from scratch, with another enrollment process. More people in our home taking my time and attention with their questions.

If this is it, all I wanted was a quiet peaceful intimate time as we near death. Now we have strangers we have to tell our story to over and over. I thought we could handle things on our own this time, but was advised me that we needed hospice, just in case we didn’t encountered something we couldn’t handle. And now we have to handle exactly what I wanted to avoid. Them!

We had an admitting nurse here for two hours two nights ago, checking him over, asking ALL THE SAME questions!!! They told me they don’t retain the records. She had a computer in front of her the whole time, filling in forms, check off boxes.

Apparently Medicare requires a face-to-face with a hospice nurse practitioner or physician to re-enroll (another cost), so one came to check him out yesterday, asking our story. She was empathetic, she took her notes by hand and was a good listener but it still took hours of our time and energy.

Both of them expressed incredulity that we’d been discharged. All the torture of these last 6 weeks and now the torture of readmittance – to what end? Hospice and the Medicare rules stole this precious time from us!!!

Today the social worker and a nurse are coming for their intake process.

I want to say “GO AWAY!” I want them to let us manage everything ourselves unless WE call THEM. But they say their visits are required.

They use diminutive terms to talk to us. Honey. Baby. Dear. Sweetie.

I’m Nancy. He’s Larry. Or Mr. Peterson, to you.

So once again, instead of being able to spend quiet time alone with my husband or with family, we are being bombarded. I have to marshall my energy to be polite to them, to tell our story, to educate all these people about the disease.

Read the notes! Read about Multiple System Atrophy before you get to our home! Tell me more about the disease prognosis than I already know. Tell me what to expect in end of life symptoms due to this specific disease, not some generic platitudes or info I’ve already read online. Offer me useful help. Offer me quiet empathy. Come and go gently and quickly.

Our friends bring food and hugs and leave quickly. They text their love and concern and say, “you don’t have to answer.” That’s empathy!!

Our friends offer what’s needed, physically and emotionally, without adding burden. That’s all I want now from the healthcare system, now that we’re back in hospice.

Things I Miss

Things I miss include seeing him standing tall, like the poppies in this painting There are so many things I miss that Multiple System Atrophy disease has taken away from us!

Ability to travel, for example. We loved to travel together. A weekend, a week. New surroundings or familiar ones. Warm or cold. Skiing was featured in a movie we watched two nights ago and I suddenly missed the fun we had riding up the chairlift together and skiing down, enjoying the conditions or complaining about the ice, then quitting early to sit at the bar for an apres-ski cocktail. I miss the fun and laughter together in those surroundings more than the skiing itself.

The more poignant ones are the daily things. The little connections that used to happen throughout the course of a normal day. Like conversation. Any conversation. It’s so hard for him even to get a single word understood. Even with my ear to his mouth.

We were having dinner a few weeks ago and I had lit a fire in the fireplace and then lit a candle between us. I thought about all the things we used to talk about during dinner – the kids, our day at work, the books or articles we were reading, how we were feeling about life, each other. Now we just struggle to get through every meal – getting the food to his mouth, chewing, swallowing without choking. It’s a slow meal, not because it’s leisurely but because it’s physically hard.

I told him I missed our conversations and asked if he did, too. He nodded and I was so sad. He doesn’t even get to have conversations with other people. Just a few words here and there. At least I can talk to others. But it’s him I want to talk to.

Then there’s the physical connections. The little touches. A hug and kiss before he left for work. Holding hands. No shoulder rubs, back rubs, foot rubs.

We used to always snuggle on the couch when we’d watch TV. Now he sits in his wheelchair and I sit on the couch alone. He used to gather me in his arms to warm me up when we first got into bed. Now I help him get from wheelchair to walker to bed. Lift his legs onto the mattress and position his feet on the foam cushions that protect them from bed sores. Help him with his catheter. Then put bandaids on his nose before I put on his face mask and turn on the oxygen and Bi-Pap machine. Those are all physical connections but not quite the same as snuggling.

Other things I miss? Walks! On the beach, summer and winter. In the woods of New Hampshire, on the colored leaves of fall or with snow falling around us. In the shallow waters of the Gulf. Just four years ago, when we came to Florida for a few months before we moved here, we were walking seven miles a day, barefoot on the beach. We’d walk to a beachfront restaurant for a cocktail, or to another for breakfast.

I miss eye contact. Catching his eyes and knowing just what each other was thinking at a party. Now his head tilts down and he rarely makes eye contact. Sometimes I just perch on the edge of the bed and look into his eyes when I get him up in the morning, just for that connection.

The other day a friend was headed to the airport to be met by her husband on her arrival. I remembered all the months Larry would drive from Cape Cod to Logan Airport in Boston to meet me when I’d return from working a week or two in Alaska with the Alaska Native Healthcare organization Southcentral Foundation. I’d walk down the concourse and find him standing tall, waiting, and my breath would catch with love. Now I never get to see him stand straight and tall. Even when he transfers from wheelchair to wherever, he is bent way over.

Most of the time I focus on what we have. But sometimes I can’t help thinking about things I miss.

I guess it will only get worse.

The Best Healthcare Experience

Original Art: "Opening up" about Best healthcare experience My husband and I went to his pulmonologist, Dr. Howard Diener, and had the best healthcare experience. I wanted to hug him. I told him he was my doctor hero. Not surprisingly, his staff was awesome – helpful, kind, caring, attentive.

We’ve seen a lot of healthcare professionals this last week or so. A parade of home health experts – nurses, and therapists for speech, OT and PT. I was asking myself why I felt so much resistance to them when they were coming into our home to help. They were all pleasant, nice people. Why was my body tensing and reacting with anger to their well meaning questions and comments?

Let’s start with the fact that they come with an agenda – fill out the forms, check the boxes that our health insurance and their company requires, regardless of relevance. They spend a lot of time looking at their computers and asking very specific questions.

Their questions are narrowing questions. They aren’t widening up questions. In general, doctors and nurses are trained to narrow down the problem and try to solve it as quickly as possible. It makes sense. Manage the symptoms. So they learn the size of his catheters rather than what’s unique to our situation.

They want to offer solutions, their expertise, rather than coming from an open frame of mind. They don’t start by asking what we’ve tried, or assume expertise on our part from our years dealing with this disease. They don’t honor our experience, or our way of doing things. Some get there after we say “tried that” over and over. The occupational therapist finally said, “you’ve had this disease so long and figured things out for yourselves so I don’t have anything else to offer, as much as I wish I did.”

I’d like them to ask what is hard for us and what is easy, what we’ve figured out and what we think we need, what we want. I’d like them to ask us for our questions, rather than starting with theirs. I’d like them to explore the fit between our situation and their care model. They each tried but struggled within the limitations of their forms and requirements.

Our great experience started differently. This doctor had cared for Larry in the hospital six months ago. He walked in the examining room and started by talking about when he cared for Larry in the hospital. That was six months ago! Then he just asked us to tell him what was going on.

He had no notes in front of him, no computer. He made eye contact the whole time. He was such a good listener. If felt so different, so much more intimate a conversation than our usual healthcare interactions. I found myself relaxing.

He asked open questions about what was working and what wasn’t. He asked me to ask him my questions one at a time. He explained things easily but with respect for our experience and expertise. He kept pointed out things that were Larry’s choices. He was totally available to us, not at all rushed. He had a wry sense of humor along with a sort of common sense approach.

When I told him we were there because we were kicked out of hospice, he said “Oh, so you didn’t die fast enough for them.” It was a perfect blunt and funny comment. Right to the heart of the matter.

At the end, he acknowledged how hard it was for us to come to him and offered to answer any questions by phone. He remembered we’d done that after Larry’s hospitalizations. He was so available then, and is making himself easily available now. We felt so cared for.

It felt like an huge gift. It was the best healthcare experience.