On Monday, it looked for all the world as though my husband was preparing to take his long journey, to make his transition to the other side. He had a fever. He was in discomfort, apparently semi-conscious. He didn't eat. He didn't drink. His eyes were rolling back. It was breathtaking. Fine one day, totally not fine the next.
The hospice nurse took me aside, looked me in the eye, and led me to understand that it was time to prepare for the worst. Maybe not that day, but maybe the next, or the day after.
"Should I 'call in' the kids?" I asked, my brain both in a fog and running frantically around in circles at the same time. The short answer: "Yes."
"In your professional opinion, what are we looking at?" I managed to whisper as the room spun around and I tried frantically to catch my breath. I needed to hear her words again. More slowly this time.
"If he does not have a turnaround, a day or two. If he eats and drinks a little, then a bit longer. Days, not weeks. Or weeks, not months."
I felt so helpless as I sat by his side and held his hand, stroked his hair, kissed his cheek. So devastated. So heartbroken. So defeated. So unprepared. Then, overnight, he "rallied." No fever. Eating. Drinking. A respite. An extension. A sigh of relief. Even some engagement with our kids and with me. One more day.
Unfortunately, though, I had to deal with another communication breakdown. Happily, my head was clear enough to see that my husband was displaying signs of discomfort (I'm sure you remember that he is non-verbal and cannot say that he needs something), and I realized that no pain medication had been administered during my all-day visit. A brief consultation with the medical technician revealed that the medication had been delivered; however, no order had been received from the doctor. The medication cannot be administered without the doctor's order, even if it is right there in the med tech's office.
"Maybe they'll send it tomorrow or the next day." What?! I had a fit. Oh, no. This was not gonna happen. Not after the last fiasco. I grabbed my cell phone and called the hospice team coordinator myself, passing my cell phone around to all interested parties to make sure communication was clear to all. I was fit to be tied. This is not the time for hospice to drop the ball on my husband again!
Everyone delivered sincere, heartfelt, deep apologies over and over. "Great. Thank you for that, but what I want is for you to fix this. And I want it fixed right now! We are talking about an end-of-life situation, and I want my husband to be comfortable today. Do you understand?!"
In a matter of minutes, an end-around solution had been proposed and adopted, much to my relief and, I'm sure, everyone else's. I am not a squeaky-wheel-type person, but I can be. I don't like to blow up, either. But, apparently, I can do it. Like Vesuvius. A bedside nurse was assigned to stay with him overnight to make sure the medication was appropriate, effective, and being properly administered. I breathed a temporary sigh of relief.
Here we are, a couple of days later. My husband has started "squirreling" his food (pocketing it in his cheeks), indicating a further decline from his pre-Monday baseline. Since dinner yesterday, his food is being served as a puree, and his liquids are thickened. This theoretically helps to prevent aspiration, but I noticed at dinner tonight that it isn't completely effective. He is choking a little, and he's having some trouble clearing his passages with a cough. He's trying to blow his food and drink out instead of swallowing it, as though he can't remember how to swallow. Or perhaps he just doesn't want to. Where just a few days ago he was "eating 100%," that hasn't happened except on Tuesday.
There's no way to know how many more roller-coaster rides there will be on this journey. There may be other close calls before he takes his last breath here on earth and makes his transition to paradise. I thought I was prepared, but here's what I found out: You might think you're ready, but you're not and never can be. Not really. When the end comes, it will be a sudden, crushing, and devastating loss. It always is, even if the process takes a while. And then there will be no more days together until eternity, when there will be endless glorious days in the presence of the Lord. And that will be...heavenly.
Thursday, May 28, 2020
Friday, May 22, 2020
Communication Breakdown
My husband has been completely non-ambulatory for about two months now. What that means is that he can no longer locomote independently at all. There has been a definite slip since the first of the year and especially since his last big seizure at the beginning of March. Whereas just a few months ago he was still walking slowly by himself, sitting down gingerly by himself, and standing up cautiously by himself with perhaps just a little help and encouragement, now he is either on his bed or in his wheelchair.
If he is not eating, he is mostly sleeping. Sometimes, he doesn't even open his eyes while eating. He chews and swallows slowly. It can take more than half an hour to feed him his meal. Every once in a while, he reaches up for something that isn't there, and then he puts his arm back down. His legs seem stiff as he tries to move them to a more comfortable position. He is unable to move from his wheelchair to his bed, and he seems anxious and even frightened when his caregivers try to move him or reposition him to take care of his personal needs.
This lack of movement, combined with side effects from certain medications, has resulted in difficulty with bowel movements (BMs). Constipation is a constant problem in these situations, and he is on daily medications to ease that. If it has been three days since the last BM, he is to be given a dose of milk of magnesia (MOM) that evening. If there has been no progress, he is supposed to get another dose in the morning. If there is no progress that afternoon, a suppository is to be administered and hospice is to be notified (Day 4). If there is still no progress by the next morning, an enema is in order (Day 5). I'm sorry if this is too much information for you, but please bear with me.
Last Friday, I was notified by the hospice nurse that it had been five days since his last BM. MOM had been started that day (two days late), and a suppository would be administered by the medical technician the next day if there had been no movement. I was there the next day (Saturday, Day 6) to make sure the suppository was administered, which it was. Apparently there hadn't been any at the facility, and it had to be ordered. I requested a phone call to update me on the situation. I received no phone call, so I wrongly assumed that everything was fine. No news is good news, right? Wrong.
The next day (Sunday, Day 7), I called the facility twice. The caregivers were no doubt very busy. The COVID situation has created lots of extra work. So the phone rang and rang, then went to voicemail. I requested a call back but still thought everything must be okay, or they would have called me. I called again on Monday (Day 8) and was routed to the nurse. At this point, it became clear to everyone that the ball had been dropped somewhere and that an enema kit needed to be ordered immediately. Whatever! Just get my husband the relief he needs! I was beside myself.
The enema kit arrived on Tuesday (Day 9). It was administered by the hospice nurse, and finally my husband's bowel was cleared. What a relief! It was obvious he was feeling much more comfortable. Well, of course he was! Can you imagine?
I have spoken to the facility administrator in person and have called on the hospice team to see what can be done to clarify and reinforce the chain of command to prevent this from scenario from repeating itself in the future. This kind of communication breakdown cannot happen again, to us or to anyone else.
I try very hard to not be that person. You know, the one who complains all the time, is always on the phone making demands, and makes life miserable for people who are just trying to do their jobs to the best of their ability. The one who elicits knowing looks and rolling eyeballs. But it's been a long haul, my patience has worn thin, I am exhausted, and this is my husband we're talking about. We have traveled this road for over a decade. I refuse to let him fall through the cracks, especially now that he is completely helpless.
Perhaps, in relaying the facts of the situation to you, I've failed to sufficiently emphasize its potentially dire consequences. Here's the thing: People die from complications of bowel obstructions and fecal impactions. It's important to know what's going on, and it's important to keep on top of situations so they don't get out of control.
What happens to people who have no advocate?
Update: As I've mentioned on several previous occasions, this facility is really good, and its employees are caring and compassionate. They want to do things right, and they want families to know their loved ones are in good hands. It looks as though my concerns have been addressed, there's a plan in place, and so far I'm being kept informed. I am grateful.
If he is not eating, he is mostly sleeping. Sometimes, he doesn't even open his eyes while eating. He chews and swallows slowly. It can take more than half an hour to feed him his meal. Every once in a while, he reaches up for something that isn't there, and then he puts his arm back down. His legs seem stiff as he tries to move them to a more comfortable position. He is unable to move from his wheelchair to his bed, and he seems anxious and even frightened when his caregivers try to move him or reposition him to take care of his personal needs.
This lack of movement, combined with side effects from certain medications, has resulted in difficulty with bowel movements (BMs). Constipation is a constant problem in these situations, and he is on daily medications to ease that. If it has been three days since the last BM, he is to be given a dose of milk of magnesia (MOM) that evening. If there has been no progress, he is supposed to get another dose in the morning. If there is no progress that afternoon, a suppository is to be administered and hospice is to be notified (Day 4). If there is still no progress by the next morning, an enema is in order (Day 5). I'm sorry if this is too much information for you, but please bear with me.
Last Friday, I was notified by the hospice nurse that it had been five days since his last BM. MOM had been started that day (two days late), and a suppository would be administered by the medical technician the next day if there had been no movement. I was there the next day (Saturday, Day 6) to make sure the suppository was administered, which it was. Apparently there hadn't been any at the facility, and it had to be ordered. I requested a phone call to update me on the situation. I received no phone call, so I wrongly assumed that everything was fine. No news is good news, right? Wrong.
The next day (Sunday, Day 7), I called the facility twice. The caregivers were no doubt very busy. The COVID situation has created lots of extra work. So the phone rang and rang, then went to voicemail. I requested a call back but still thought everything must be okay, or they would have called me. I called again on Monday (Day 8) and was routed to the nurse. At this point, it became clear to everyone that the ball had been dropped somewhere and that an enema kit needed to be ordered immediately. Whatever! Just get my husband the relief he needs! I was beside myself.
The enema kit arrived on Tuesday (Day 9). It was administered by the hospice nurse, and finally my husband's bowel was cleared. What a relief! It was obvious he was feeling much more comfortable. Well, of course he was! Can you imagine?
I have spoken to the facility administrator in person and have called on the hospice team to see what can be done to clarify and reinforce the chain of command to prevent this from scenario from repeating itself in the future. This kind of communication breakdown cannot happen again, to us or to anyone else.
I try very hard to not be that person. You know, the one who complains all the time, is always on the phone making demands, and makes life miserable for people who are just trying to do their jobs to the best of their ability. The one who elicits knowing looks and rolling eyeballs. But it's been a long haul, my patience has worn thin, I am exhausted, and this is my husband we're talking about. We have traveled this road for over a decade. I refuse to let him fall through the cracks, especially now that he is completely helpless.
Perhaps, in relaying the facts of the situation to you, I've failed to sufficiently emphasize its potentially dire consequences. Here's the thing: People die from complications of bowel obstructions and fecal impactions. It's important to know what's going on, and it's important to keep on top of situations so they don't get out of control.
What happens to people who have no advocate?
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| Our 50th wedding anniversary February 28, 2020 Still able to locomote, sit in a regular chair, drink from a glass without a straw. |
Thursday, May 7, 2020
Dark Shadows
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| At least I can see him! |
Being pretty much stuck in the house due to the COVID-19 shelter-in-place orders leaves lots of time for thinking. Perhaps too much. As my husband's condition has continued to deteriorate in what seems to me to be an accelerated manner as he slips away from me inexorably, I find that I am spending an unhealthy amount of time in morose thought, self-flagellating over rocks I must have left unturned. Things I wish I'd done differently or not done at all. Things I've said that should have been left unsaid. Things I've not said that I now find myself repeating to him over and over again, hoping to make up for all those lost opportunities. Sometimes, I do get the impression that my words and actions are finding their target in his heart. I certainly hope so, anyway.
One of the thoughts that torments me to the point of sobbing is wondering just how aware he might be of his situation, with no way of escaping or expressing his thoughts and fears. Is he content? Is he at peace? Or is he struggling to be understood, living a nightmare in the prison that is his failing mind and body? Is it torture for him the way it is for me? I really hope not. I really hope his thoughts are fleeting and forgotten before they can be confusing. And I really hope he isn't in pain. Pain on top of all this would be adding insult to injury in a way I might not be able to handle emotionally.
The end of March and beginning of April saw four not-so-great anniversaries come and go for us, all in just over a week. Four anniversaries of loss and heartache and bitter pills, including my husband's diagnosis, his placement, and my mother's death. No wonder the past few weeks have been especially difficult. No wonder I felt as though I had been thrown against a wall and could barely breath under the crushing heaviness of it all.
It occurs to me that those same four painful anniversaries will revisit us every year for the rest of our days. They'll revisit me, anyway. Heaven help me.
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