April 26, 2019
There was a party going on this afternoon when I arrived for a visit with my husband. Cheerful people were smiling and laughing and chatting and enjoying music. There was sparkling cider and a marvelous cake with whipped cream and fresh strawberries. It isn't every day someone turns 85! The resident being celebrated is married to a lovely, vivacious, much younger woman who comes to see him several times a week. It's good to know that most of the residents do have frequent visitors. It isn't the kind of place where you drop off Gramps, walk away, and never come back. So, there's that.
My husband was in his room, on his bed, staring at the wall. I sat next to him, and he allowed me to give him a little rubdown. I told him there was a party going on and asked him if he'd like to go there with me. It took some coaxing, but he did let me take his hand and lead him out to the common area, finally. He was all smiles, too, which is a bit unusual.
He smiled at me, he smiled at the other residents, he smiled at the hospice people who were there, he smiled at the caregivers. I was happy to see him in such an apparent good mood and took advantage of the situation to "dance" around with him a bit, holding his hands and beaming up at him like a schoolgirl. And just when I thought all his attention was on me, he reached out and patted the derriere of a guest who was bending over a table. She seemed rather flattered, thank goodness. Pro tip: Don't bend over tables around people who have lost all their social filters!
We continued intermittently "dancing" and resting. He hadn't said anything at all, but that isn't unusual anymore. At one point, as I was giving him one of many special hugs, he reciprocated, tried to lick me, grinned, looked me right in the eye, and said, "You're a...You're a good kid."
It's stunning how such a small thing can mean so much.
Monday, April 29, 2019
Death Comes to Journey House
April 29, 2019
Two more residents have passed away, one yesterday and one today. That makes a total of six since my husband moved in last June. I can't say either one of these two was a surprise, exactly, except that death always is surprising, even when it's expected.
It is very hard on the caregivers, who do such a fine job of nursing and changing and feeding and showing affection to each and every one. To be the ones responsible for each resident's best possible life, at the very end of life, must be both a privilege and a curse. As each person declines little by little, or sometimes quite rapidly, how difficult it must be to maintain a cheerful and encouraging demeanor.
Even as a visitor, as I am, you develop a fondness for the residents, an understanding of their quirks, a camaraderie and community with their friends and relatives. And then, suddenly, they're gone. Gone gone. He won't be grabbing my hand and holding it tight as I walk by anymore. She won't be returning my greeting with a sweet smile. It's sad from our angle. But from their point of view, I'm sure it's glorious to be free!
As my husband and I walked and swayed to the music coming through our headphones today, I held him more closely. I gave him extra smiles and plenty of kisses. I stroked his cheek gently and gazed tenderly into his eyes. I showered him with words of love and admiration. I savored every moment.
Would that we all could remember that life is a gift, a fleeting vapor. Some things really matter. And some things really don't.
Two more residents have passed away, one yesterday and one today. That makes a total of six since my husband moved in last June. I can't say either one of these two was a surprise, exactly, except that death always is surprising, even when it's expected.
It is very hard on the caregivers, who do such a fine job of nursing and changing and feeding and showing affection to each and every one. To be the ones responsible for each resident's best possible life, at the very end of life, must be both a privilege and a curse. As each person declines little by little, or sometimes quite rapidly, how difficult it must be to maintain a cheerful and encouraging demeanor.
Even as a visitor, as I am, you develop a fondness for the residents, an understanding of their quirks, a camaraderie and community with their friends and relatives. And then, suddenly, they're gone. Gone gone. He won't be grabbing my hand and holding it tight as I walk by anymore. She won't be returning my greeting with a sweet smile. It's sad from our angle. But from their point of view, I'm sure it's glorious to be free!
As my husband and I walked and swayed to the music coming through our headphones today, I held him more closely. I gave him extra smiles and plenty of kisses. I stroked his cheek gently and gazed tenderly into his eyes. I showered him with words of love and admiration. I savored every moment.
Would that we all could remember that life is a gift, a fleeting vapor. Some things really matter. And some things really don't.
Friday, April 26, 2019
Hospice Renewal
April 22, 2019
It's hard to believe, but it's been just a couple of days shy of six months since my husband was placed in hospice care. Time flies, whether or not you're having a good time.
I've been very pleased with the care and services my husband is receiving through hospice. For those of you who don't know, a hospice contract must be renewed every six months. Sometimes a person "graduates" from hospice back into regular care and then back into hospice again, over and over. That is a disquieting scenario, so even the possibility is nerve-making in the extreme.
Knowing the contract was about to expire, I was a little apprehensive over the past couple of weeks. Of course I shouldn't have been. It isn't as though my husband's condition is dramatically improving or expected to. And if an absolute creative miracle is going to happen, this would be a good time for it to do so.
When I came back home after our visit today, there was a message on the answering machine from the home health coordinator. She wanted to let me know right away that the request for renewal of hospice has been approved.
That's a relief. But it's also an indication.
It's hard to believe, but it's been just a couple of days shy of six months since my husband was placed in hospice care. Time flies, whether or not you're having a good time.
I've been very pleased with the care and services my husband is receiving through hospice. For those of you who don't know, a hospice contract must be renewed every six months. Sometimes a person "graduates" from hospice back into regular care and then back into hospice again, over and over. That is a disquieting scenario, so even the possibility is nerve-making in the extreme.
Knowing the contract was about to expire, I was a little apprehensive over the past couple of weeks. Of course I shouldn't have been. It isn't as though my husband's condition is dramatically improving or expected to. And if an absolute creative miracle is going to happen, this would be a good time for it to do so.
When I came back home after our visit today, there was a message on the answering machine from the home health coordinator. She wanted to let me know right away that the request for renewal of hospice has been approved.
That's a relief. But it's also an indication.
Friday, April 19, 2019
It's a Good Friday
April 19, 2019
Today is Good Friday. Lord, I am grateful for your willingness to come be among us, showing us how to live. Especially since You knew this day would come. And it wouldn't be pretty, but it would make a way for us to be reconciled to the Father. Thank you! Hallelujah, what a Savior!
It's hard to explain how or why, but my husband and I had an excellent visit today. When I arrived, he was doing battle royale with the caregivers who were trying to usher him into the bathroom for a change of everything and a shower. Bless them! They are so patient and kind, and they do a great job. But I thought, "Oh, boy. This is gonna be wonderful..."
When he walked back out, he was all cleaned up, smelled good, and looked handsome with his hair combed and tamed. He was still confused and agitated, so I greeted him with a big smile and my very best "calm and soothing" voice. He responded with a big smile and -- I thought -- recognition. He was smiling at ME, not just at some woman saying hello. He took my hand, looked into my eyes, smiled again, and gave me a kiss. Wow! My heart was so filled with joy.
After several hours of relative wonderfulness, he decided to lie down on his bed. I pulled up his covers as he gazed at me. I took his hand and asked him if he wanted to pray. He nodded his head and folded his hands, and I said the Lord's Prayer. Then I asked if he wanted to pray for our children. Again, he nodded his head. I took his hand, and I prayed. I felt as though he was praying with me, though of course he didn't utter a syllable. It has been a very long time since we have had such a cognitive connection.
So, on this Easter weekend, I thought it would be good to share this miraculous day -- this Resurrection story -- with you. Our prayers don't have to be loud to be heard. The Lord knows our hearts, and He knows how much today meant to me in so many ways. What a gift!
Speaking of Resurrection, Sunday's coming! All around the globe, Christians will proclaim, "The Lord is Risen! He is Risen indeed!" Happy Easter to you all.
Today is Good Friday. Lord, I am grateful for your willingness to come be among us, showing us how to live. Especially since You knew this day would come. And it wouldn't be pretty, but it would make a way for us to be reconciled to the Father. Thank you! Hallelujah, what a Savior!
It's hard to explain how or why, but my husband and I had an excellent visit today. When I arrived, he was doing battle royale with the caregivers who were trying to usher him into the bathroom for a change of everything and a shower. Bless them! They are so patient and kind, and they do a great job. But I thought, "Oh, boy. This is gonna be wonderful..."
When he walked back out, he was all cleaned up, smelled good, and looked handsome with his hair combed and tamed. He was still confused and agitated, so I greeted him with a big smile and my very best "calm and soothing" voice. He responded with a big smile and -- I thought -- recognition. He was smiling at ME, not just at some woman saying hello. He took my hand, looked into my eyes, smiled again, and gave me a kiss. Wow! My heart was so filled with joy.
After several hours of relative wonderfulness, he decided to lie down on his bed. I pulled up his covers as he gazed at me. I took his hand and asked him if he wanted to pray. He nodded his head and folded his hands, and I said the Lord's Prayer. Then I asked if he wanted to pray for our children. Again, he nodded his head. I took his hand, and I prayed. I felt as though he was praying with me, though of course he didn't utter a syllable. It has been a very long time since we have had such a cognitive connection.
So, on this Easter weekend, I thought it would be good to share this miraculous day -- this Resurrection story -- with you. Our prayers don't have to be loud to be heard. The Lord knows our hearts, and He knows how much today meant to me in so many ways. What a gift!
Speaking of Resurrection, Sunday's coming! All around the globe, Christians will proclaim, "The Lord is Risen! He is Risen indeed!" Happy Easter to you all.
Friday, April 12, 2019
Pins and Needles, Part 3
April 5, 2019
The first week of each month rolls around, and I anxiously await the weigh-in. Will it be higher? Lower? The same? The hospice nurse is at the facility when I arrive. I look at her; she looks at me. We both know there's "A Question" hanging in the air.
Frankly, he doesn't appear to have lost weight to me. But he doesn't appear to have gained any, either. And that's probably not a big deal. The caregivers continue to feed him double portions plus Ensure. I would be packing on the pounds, but he is restless and only sits, exhausted, for a minute or two before resuming his endless pacing. This reportedly goes on all day, but he is often sitting briefly somewhere or other when I arrive, rather than wandering around. He's apparently burning a lot of calories, though that's hard to imagine, especially given the snail's pace at which he walks.
The nurse opens her binder and smiles at me. That's my cue to approach her. She looks at his chart. She compares his weight to previous entries. He seems to have lost half a pound. It could be a minor blip, or last month's weight might have been off a bit, or the weigh-in wasn't exactly accurate. She looks up at me reassuringly. Nothing to worry about, no need to be concerned.
I should be breathing a sigh of relief, but I'm not. I'm not even sure I remember what that's like, exactly. We'll see what Pins and Needles, Part 4, brings.
The first week of each month rolls around, and I anxiously await the weigh-in. Will it be higher? Lower? The same? The hospice nurse is at the facility when I arrive. I look at her; she looks at me. We both know there's "A Question" hanging in the air.
Frankly, he doesn't appear to have lost weight to me. But he doesn't appear to have gained any, either. And that's probably not a big deal. The caregivers continue to feed him double portions plus Ensure. I would be packing on the pounds, but he is restless and only sits, exhausted, for a minute or two before resuming his endless pacing. This reportedly goes on all day, but he is often sitting briefly somewhere or other when I arrive, rather than wandering around. He's apparently burning a lot of calories, though that's hard to imagine, especially given the snail's pace at which he walks.
The nurse opens her binder and smiles at me. That's my cue to approach her. She looks at his chart. She compares his weight to previous entries. He seems to have lost half a pound. It could be a minor blip, or last month's weight might have been off a bit, or the weigh-in wasn't exactly accurate. She looks up at me reassuringly. Nothing to worry about, no need to be concerned.
I should be breathing a sigh of relief, but I'm not. I'm not even sure I remember what that's like, exactly. We'll see what Pins and Needles, Part 4, brings.
Sunday, April 7, 2019
The Best Years of Our Lives
In follow-up to "Decennium Atrocius," I was thinking about something the other day that I probably should share. I'm just not sure how to do that without having a pity party, but I'll try:
Alzheimer's is an "awful, terrible, no good, very bad" disease (hat tip to Judith Viorst's excellent Alexander and the Terrible, Horrible, No Good, Very Bad Day). I think most everyone would agree with that statement. Most people who get Alzheimer's are elderly. But not all. My husband is in the second category.
As I look back on the past decade (plus), it occurs to me that probably the very best years of our lives have been stolen by this enemy. Our kids are out of school, planning and developing their careers, and establishing their own families. We worked hard and were looking forward to saving hard for the retirement we'd be enjoying in a few short years.
We'd thought about perhaps taking six months to travel from town to town and state to state (we live in the United States), renewing friendships with old friends who have moved away, seeing the beautiful sights along the way, enjoying each other's company, relaxing together, perhaps seeing again the places we'd particularly loved over the years. It was going to be wonderful, and I had even bigger dreams for us. Dreams where we walked along the coast in Ireland and visited ancestral villages in England and sat, hand-in-hand, at a little cafe in Paris while contemplating a trip to New Zealand or Bora Bora or other exotic locations. Just the two of us.
But, as you well know, our retirement doesn't look like that at all. In fact, it is "a perfect graveyard of buried hopes" (Anne Shirley in Anne of Green Gables, by Lucy Maude Montgomery). I haven't spent a lot of time feeling sorry for myself during this trial by fire. Truly. Life is not fair, so why should it be fairer to me -- to us -- than to the next person? Every once in a while -- let's be real -- it does hit me like a ton of bricks. Even if, at some point, I were to be able to travel to every fantastic place in the world, do all sorts of phenomenal things, take thousands of photos, and write hundreds of blog posts, it just wouldn't be the same without my beloved.
And so my dreams have gotten smaller. They consist of hoping he will smile at me and recognize me when I enter the room. Perhaps he will even say something to me. I dream of being able to bring him home to care for him, but that is currently completely out of the question. I dream that I will walk into his room, and he will say, having packed all his things, "There you are! I feel so much better now. Where would you like to go? What would you like to do? Let's go home first, though, okay?"
It would be such a small thing for my God, Who created the universe by speaking it into being, to perform this miracle. But it would be such a big thing for me. It would be the biggest thing ever.
Alzheimer's is an "awful, terrible, no good, very bad" disease (hat tip to Judith Viorst's excellent Alexander and the Terrible, Horrible, No Good, Very Bad Day). I think most everyone would agree with that statement. Most people who get Alzheimer's are elderly. But not all. My husband is in the second category.
As I look back on the past decade (plus), it occurs to me that probably the very best years of our lives have been stolen by this enemy. Our kids are out of school, planning and developing their careers, and establishing their own families. We worked hard and were looking forward to saving hard for the retirement we'd be enjoying in a few short years.
We'd thought about perhaps taking six months to travel from town to town and state to state (we live in the United States), renewing friendships with old friends who have moved away, seeing the beautiful sights along the way, enjoying each other's company, relaxing together, perhaps seeing again the places we'd particularly loved over the years. It was going to be wonderful, and I had even bigger dreams for us. Dreams where we walked along the coast in Ireland and visited ancestral villages in England and sat, hand-in-hand, at a little cafe in Paris while contemplating a trip to New Zealand or Bora Bora or other exotic locations. Just the two of us.
But, as you well know, our retirement doesn't look like that at all. In fact, it is "a perfect graveyard of buried hopes" (Anne Shirley in Anne of Green Gables, by Lucy Maude Montgomery). I haven't spent a lot of time feeling sorry for myself during this trial by fire. Truly. Life is not fair, so why should it be fairer to me -- to us -- than to the next person? Every once in a while -- let's be real -- it does hit me like a ton of bricks. Even if, at some point, I were to be able to travel to every fantastic place in the world, do all sorts of phenomenal things, take thousands of photos, and write hundreds of blog posts, it just wouldn't be the same without my beloved.
And so my dreams have gotten smaller. They consist of hoping he will smile at me and recognize me when I enter the room. Perhaps he will even say something to me. I dream of being able to bring him home to care for him, but that is currently completely out of the question. I dream that I will walk into his room, and he will say, having packed all his things, "There you are! I feel so much better now. Where would you like to go? What would you like to do? Let's go home first, though, okay?"
It would be such a small thing for my God, Who created the universe by speaking it into being, to perform this miracle. But it would be such a big thing for me. It would be the biggest thing ever.
Friday, April 5, 2019
Decennium Atrocius
We're approaching the ninth anniversary of my husband's "official diagnosis," but testing began in March, ten years ago. To say it's been a decennium atrocius would be an understatement.
The initial onset began even earlier, of course, but is only recognizable in hindsight, as so many things in life are. Little things happen with increasing frequency, but you either don't really notice them or you shake them off as being inconsequential. This is what it was like. I should say, this is what it was like for us, because everybody's story is the same in a way. But everybody's story is different:
A person repeats a story. Who hasn't done that? A person searches for the right word. Who hasn't done that? A person misses a deadline. Well, who can blame him? There's too much work to do for one person. The distractions are constant. There are negative personality changes, but they aren't really "changes." They're more like enhancements. You understand. He's has been working too hard and needs more rest. Fuses get short at work and at home. Again, you think your loved one just needs some time off.
You go to his office to go out to dinner with him after your own work day, but you end up assisting with his paperwork instead. You find piles of documents everywhere. Six copies of everything. You start to go through them, to organize them, to throw some of them away or shred them as needed. He panics.
"No! I need that!"
"But, honey. You have six copies of it. Do you really need six copies of it?"
"Don't throw anything away!"
Okay, you think to yourself. He's definitely stressed out, and he's concerned that you'll throw out an important contract or something. You just reorganize the piles so things will be easier to find. You put all six copies of each thing together. You ask if he'd like you to go get some take-out, since he's on a deadline. You don't want him to miss another deadline. Or another meal.
This goes on for several months or maybe it was a couple of years, incrementally more and more, until you're actually helping with spreadsheets and reports that he isn't "able to get to" because of "the work load." And still this doesn't ring any bells with you, because it's become normal. He's putting in longer and longer hours in an effort to get things done and keep his job. Out he goes at 6 in the morning. Back he comes at 8. Then 9. Then 10. Then 11. Then 12. You start to wonder if there's someone else.
Finally, he blows up at his boss's boss during an important business meeting. He's placed on a performance improvement plan (PIP) at his next review. As you are both well aware, nobody "survives" those. But you kick in the afterburners to make sure all the t's are crossed and all the i's are dotted after your own day of work. You wonder why he doesn't seem to be able to get this stuff done and keeps calling you at work with Excel questions, but still you haven't figured out that there's a real problem. Socially, he's getting by just fine. Or at least that's how it appears. Nobody knows something is very, very wrong. Not even you.
He survives the PIP! Nobody can believe how he's brought his performance up. But you can, for obvious reasons. You breathe a sigh of relief, but not for long; because, he might have survived the PIP, but the next person RIF'd (reduction in force) will probably be him. It usually is after a PIP. And...it is.
Because of the economic downturn -- and probably his age -- it would be another full year before he would have an opportunity to work even a temporary job (read about that here) and before his sisters, concerned, would take me aside to ask if I had a physical scheduled for him. Others close to him were starting to notice that something was wrong, but I was in denial. But since his temp job manager had noticed, too, I made the call. The rest, as they say, is history.
The initial onset began even earlier, of course, but is only recognizable in hindsight, as so many things in life are. Little things happen with increasing frequency, but you either don't really notice them or you shake them off as being inconsequential. This is what it was like. I should say, this is what it was like for us, because everybody's story is the same in a way. But everybody's story is different:
A person repeats a story. Who hasn't done that? A person searches for the right word. Who hasn't done that? A person misses a deadline. Well, who can blame him? There's too much work to do for one person. The distractions are constant. There are negative personality changes, but they aren't really "changes." They're more like enhancements. You understand. He's has been working too hard and needs more rest. Fuses get short at work and at home. Again, you think your loved one just needs some time off.
You go to his office to go out to dinner with him after your own work day, but you end up assisting with his paperwork instead. You find piles of documents everywhere. Six copies of everything. You start to go through them, to organize them, to throw some of them away or shred them as needed. He panics.
"No! I need that!"
"But, honey. You have six copies of it. Do you really need six copies of it?"
"Don't throw anything away!"
Okay, you think to yourself. He's definitely stressed out, and he's concerned that you'll throw out an important contract or something. You just reorganize the piles so things will be easier to find. You put all six copies of each thing together. You ask if he'd like you to go get some take-out, since he's on a deadline. You don't want him to miss another deadline. Or another meal.
This goes on for several months or maybe it was a couple of years, incrementally more and more, until you're actually helping with spreadsheets and reports that he isn't "able to get to" because of "the work load." And still this doesn't ring any bells with you, because it's become normal. He's putting in longer and longer hours in an effort to get things done and keep his job. Out he goes at 6 in the morning. Back he comes at 8. Then 9. Then 10. Then 11. Then 12. You start to wonder if there's someone else.
Finally, he blows up at his boss's boss during an important business meeting. He's placed on a performance improvement plan (PIP) at his next review. As you are both well aware, nobody "survives" those. But you kick in the afterburners to make sure all the t's are crossed and all the i's are dotted after your own day of work. You wonder why he doesn't seem to be able to get this stuff done and keeps calling you at work with Excel questions, but still you haven't figured out that there's a real problem. Socially, he's getting by just fine. Or at least that's how it appears. Nobody knows something is very, very wrong. Not even you.
He survives the PIP! Nobody can believe how he's brought his performance up. But you can, for obvious reasons. You breathe a sigh of relief, but not for long; because, he might have survived the PIP, but the next person RIF'd (reduction in force) will probably be him. It usually is after a PIP. And...it is.
Because of the economic downturn -- and probably his age -- it would be another full year before he would have an opportunity to work even a temporary job (read about that here) and before his sisters, concerned, would take me aside to ask if I had a physical scheduled for him. Others close to him were starting to notice that something was wrong, but I was in denial. But since his temp job manager had noticed, too, I made the call. The rest, as they say, is history.
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