Imagine yourself on your back in a hospital bed, the foot and head of the bed raised a bit to encourage proper circulation, unable to change position, unable to lift your head up, unable to hold onto the side rails. Your beloved is sitting next to you, and you're holding your beloved's hand, unable to squeeze it hard like you used to, unable to express yourself, unable to even keep your eyes open.
Suddenly, two people in uniforms enter your room, saying it's time to change you. Your beloved moves to the side of the room as these two people roll your bed away from the wall, flanking it, raising it up higher, lowering the feet and head. It feels as though you are being jerked around, even though they are being gentle and friendly. You hold onto your blanket desperately as they try to uncover you, to change you. What is happening? You are anxious. Using your bed pad, they turn you to one side, then the other, as they efficiently remove your soiled, disposable briefs and fasten the tabs on clean ones. You are indignant and complain the only way you can, by wailing.
Now, they say they are going to move you up in your bed. You are tall, and your feet are touching the footboard. They need to reposition you. They are standing over you, very close. They take hold of your bed pad and count one, two, three. You feel helpless as you are suddenly projected backwards, your head landing just short of the headboard. You whispered something towards the ceiling in mid-motion, your voice small, weak, raspy: "I'm scared."
Your beloved hears this again as the carer repeats it. It's devastating, demoralizing. A punch in the heart. These are words you have never, ever voiced out loud, probably, to anyone. And for you to say them now, when you cannot really speak, makes them doubly tragic. Especially heartbreaking.
But of course you are scared, my darling. Anyone would be afraid in such a helpless position. When the carers come in, you don't know what they're going to do to you. When they turn you to the side, you don't know that you aren't going to keep going over the edge. When they move you up in your bed, it feels as though you are flying through the air backwards, and you have no way to break the fall you're expecting. You're completely at their mercy.
They leave the room, and I sit next to you again to calm you, holding your hand, stroking your cheek, your hair, whispering in your ear, "Don't be afraid, my darling. You are safe. I love you. God loves you. There is nothing to fear. Everything is going to be all right."
And it will. But not yet.
Tuesday, June 23, 2020
Sunday, June 21, 2020
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.
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.
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.
Saturday, June 13, 2020
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.
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.
Tuesday, June 9, 2020
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.
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.
Friday, June 5, 2020
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?
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?
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| Sleeping like a baby. Happy Birthday, my darling. |
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