The Pack Rat

Here's one of the unpublished posts I found. It's dated February 23, 2020.
It's springtime in California. For the first time in years, I have a powerful dose of spring cleaning urge. And so, like a maniac, I started trying to organize the garage today instead of beginning with something easy. Along with the "man cave," one of the other rooms, several of the closets, and a storage unit, the garage (together with the crawl space storage under the house) is one of the husband-only domains in our home. It's a daunting task, but I won't be able to organize the rest of the house without somewhere to stage and sort all the things he's collected over the years.

Mind you, I'm not planning to plow through "his stuff" with abandon. That just doesn't seem right, somehow. Not yet, anyhow. It just feels as though it might be time to start thinking about culling the herd, so to speak. But I've discovered that it's going to be a monumental undertaking. It turns out there's a lot. A whole lot.

I knew about the hoarding of CDs, DVDs, and sports cards. Those were collections, a hobby, I told myself. He spent hours organizing and filing and cataloging his collections. And yet they are in total disarray, some here, some there, and I'm still finding more. Even in the garage. And under the house.

He has tool chests, yet there are tools absolutely everywhere. Decaying, rusting bits and bobs. Tiny containers of something or other having to do with nuts and bolts and nails and screws and things. There are car parts, but are they old parts that are broken and have been replaced with new ones, or are they new ones? Am I meant to figure that out somehow, or should they just be discarded? He seems to have purchased new cleaners and waxes and motor oils and things instead of using up the ones he already had. And they're everywhere. Every shelf (and there are many) is a fresh challenge for which I am wearing leather utility gloves, just in case.

Who knows, really, how long this disease has been attacking my husband? Was he unable to find what he was looking for, or had he forgotten what he had and where he had placed things? It must have been so incredibly frustrating for him, poor man. Imagine using an item and not remembering where it belongs or even that you have it. Imagine coming home with a new container of something or other you've run out of and need for a project, only to find there are already half a dozen half-empty ones. Imagine never throwing anything away for fear of having thrown away the only one you would ever have. Imagine not letting anyone help you, because you don't want them to know how bad things are.

Imagine having six copies of something at your office, but not being able to find a single one, even though they're right there in front of you. This is what I discovered when I went to his workplace to help him with a project years ago, before he lost his job, when he was so exhausted and working incredibly long hours just to keep his head above water.The year I became his unofficial administrative assistant, I thought he was burning out (as they say) from his high-stress job. He couldn't seem to get his act together. It makes me weep to realize that, at the time, I didn't understand what was happening to him.

What a nightmare this disease is, not only for the ones who have it, but also for those closest to them. It is relentless. It is cruel. But all disease is, to some degree or other. It's just that this is the one we're dealing with at the moment, and it ain't pretty. Someday, I hope I'll be able to look back and realize I did the best I could for the one I love. But right now, I am thinking I may have embarked on this project a bit too soon.

What a Difference a Day Makes

June 12

I finally got some sleep last night, so I was in a pretty good mood when I walked into my awake husband's room and stood at the foot of the bed, greeting him with a big smile. Of course, it occurred to me by the look in his eyes that he was surely wondering who was behind the mask!

Just then, the caregiver came in with his lunch. After first closing his mouth firmly and turning his head away (more interaction and communication, albeit silent, than has been usual of late), he deigned to try a spoonful of whatever the beige pureed matter was. He must have liked it, because he soon swallowed and opened his mouth for another spoonful. And another.

The atmosphere in the room was upbeat as I chatted with the caregiver, we laughed about something or other, we made teasing remarks to my husband, and he continued eating without falling asleep between bites. Most unusual.

By then, being social distanced from the caregiver, I had lowered my mask for my husband so he could see my face grinning at him. He responded with a real smile and a widening of his eyes and a pursing of his lips. And then he reached towards me, hand extended to hold mine. Well, dear reader! Was I a happy camper? Yes, indeed! He fell asleep soon after finishing his meal, my hand firmly clasped in his as I sat on the edge of his bed.

And so, you see, even now God has apparently decided to surprise me with precious moments, unexpected gifts, of joy and hope. He knows just what I need. He has been, is, and will be so good, always good.

The Comeback Kid

Weird things are happening with my husband's body now that he's been completely bedridden for a while. His legs and feet are stiff. He can bend his knees, but not on request. He can't really use his hands much, and the fingers of his right hand are swollen, tight together, curled under, and unable to be straightened without causing him obvious pain in spite of the routine administering of pain medication. His hands and forearms, uncovered, are sweaty and hot. Meanwhile, his feet, covered with a sheet and light blanket, are ice cold.

The hospital bed is adjusted to just the right angles so his legs and head are elevated. He is turned regularly and ever so carefully to avoid bed sores. Pillows are placed here and there to relieve pressure between his bony knees, under his legs, along his side. He is changed regularly so he will be clean and dry and as comfortable as possible. The hospital gowns I purchased for him are being put to good use.

In spite of the attentive care he is receiving, a foul-smelling fungal infection has developed between the fingers and on the palm of his strictured right hand. Medicinal powders are being applied religiously to clear that up, and a dry washcloth is rolled up and delicately inserted in the curve of his fingers and palm to absorb moisture. He neither holds it nor releases it. It's just there, unless he pulls at it with his left hand. He sometimes raises his left arm as if reaching for something, but not his right arm.

The hospice nurse visits more regularly, twice a week instead of once. But, increasingly, the on-call nurse is summoned to the facility to address something or other that has popped up. He's been eating most of his meals for the past couple of days, and drinking. He was awake for a while today. When his eyes turned in my direction, it was like he wasn't seeing me except once or twice, when he seemed to be wondering who I was.

Seeing him like this daily is very difficult physically and emotionally. The nurse gave me a flyer yesterday. It's about what to expect as the end of life approaches. Nobody is encouraging me to think this final process will be lengthy, but it's possible. Anything is possible. But that doesn't mean it's likely. My consolation is that my husband is more than likely unaware. He is slumbering, being looked after, and showered with love. And when this is over, he will be healed and whole and in the presence of the Lord. Soon, possibly. But not yet. He's still the Comeback Kid.

Happy Birthday to You

Wednesday, just about a week after "The Close Call," we celebrated my husband's 72nd birthday. I brought special "soft" treats for him to enjoy (puddings and Jell-o), and I called the kids and his siblings so each could sing "Happy Birthday" to him on speaker phone. He opened his eyes and looked surprised for the singing, but I'm not sure if that was because he recognized voices or if it was because the volume was up all the way when I put the phone next to his ear. I'd like to think he recognized voices, so I'll go with that.

Because of COVID-19, we weren't able to gather the family together for a party as we did last year. That would have been too many people at once, and social distancing protocols would have been impossible. Our son who lives closest to the facility was able to stop by for a visit with his beautiful bride and their two little boys to sing to Papa in person. Our kids are and have been wonderful. As my friend Howard would say, they are all above average! I felt blessed, and it was a good day with happy memories.

Yesterday (Thursday), my husband ate 10% of his breakfast, none of his lunch, and had very little by way of liquid before I got there. When I arrived after lunch, the Comeback Kid surprised me by being awake and seeming relatively alert, comparatively speaking, for hours. He even smiled at me and spoke, very softly, on two occasions ("yes" and "pretty good," the most he's said to me in I don't know how long). He had some Jell-o, and I was able to "push" liquids (about four small glasses) during my stay. I was thrilled that he also ate his whole dinner. Though the pureed food looks decidedly unappetizing, it doesn't taste too bad. It's the same meal that's served to everyone else. The color and consistency are definitely unappealing, however.

Today (Friday), he again didn't have breakfast or lunch or liquids. This time, even with my very best coaxing efforts, I wasn't able to get him to drink much or eat more than a fraction of his dinner, though he did have one small pudding. He just didn't want to wake up, even when the caregiver was washing his face and applying moisturizer. Even when I was patting his cheeks and showering him with kisses and asking him to wake up for me. My poor darling. One day you're up, and the next day you're down, it seems.

Who knows what tomorrow may bring? But if he doesn't eat, and if he doesn't drink, well, that won't be a good sign, eh?

Sleeping like a baby.
Happy Birthday, my darling.

The Close Call

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.

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?

Our 50th wedding anniversary
February 28, 2020
Still able to locomote, sit in a regular chair,
drink from a glass without a straw.

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.

Dark Shadows

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.