NEED PRAYER NOW
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D
I spent much of last night and this morning deciding if I should correct John if he gets stuff wrong. On one side, it would help him to catch on to what's real and what's not. On the other side, he might worry he is crazy, and I don't want to cause him any more mental anguish than he's already going through. (It may have been nine weeks for me, but he's only been back to connecting with what's going on for the last two weeks at best.)
Then Abing wrote me to thank me for advice given a few weeks ago. She said that I reminded her that God is our strength. Perfect timing, since I was just going to the hospital a few minutes later, so I handed it off to God. (Just because I know it's God's strength doesn't mean I remember that all the time. lol)
More good news! John sat all by himself for a little while today! (He can't sit up by himself yet, but no one held him upright while he was sitting. The amount of core muscle needed and the amount of mental coordination just to sit is much harder than we notice, until we can't.) He was thrilled.
I also let him lead the conversation most of the time. (Told one of my stories only to help him not focus so much on the agonizing pain of his hips.)
He's been getting new pajamas every day. (Well, okay. You can call them hospital gowns, but unlike the other hospital, these truly do look more like pajamas for men than gowns for women.) I told him he changes pajamas more often than I do now.
He laughed, and told the story that when the nurses were changing him, he said, "Shoot. I don't have any clean underwear." They laughed and told him they have no idea the last time he wore underwear, or if he ever did. He thought that one over and realized how funny it was.
So, he may get stuff wrong, but he's getting the hang of it himself. God's strength and ways really do make it easier than trying it my way.
Other good news. Yesterday, they were limiting him on how much he could sip. Today, he gets all the ice chips he wants. And he wants them all the time. It's to the point, it's worth more sitting up and feeling that agonizing pain in his hips than lie back, because if he lies back he can't have ice chips.
I think "ventilator" is past tense, but the nurse was very busy, so didn't have time to ask. (Two new arrivals and I saw one guy get to go home.)
But, I ran into some people I only knew from their backs before -- the two EMT's who rushed John to HUP in the ambulance. They recognized him immediately. They were shocked to see him sitting up. (I strongly suspect they thought they were transferring a dead man, just in case.) I remember them most when I was chasing after them when they took him into HUP. It was the only way to figure out where they were taking him.
John seemed upset that he didn't remember them. I told him he wasn't awake for that trip, so he couldn't remember.
His hip pain is excruciating. He was angry because "they won't do anything but tell me they can't do anything." Then I watched one nurse readjust him, but that didn't help, so she told the other nurse. That nurse got him flat on the back for some relief, and then readjusted his whole body, like he asked. (Still cool he can ask.) And then she had to put the bed back up to 30 degrees because she had already talked to his doctor about it. (The least amount of incline as he is getting food through the feeding tube.) That did help quite a bit, even though John didn't expect it to. And then a third nurse came in with pain meds, which, although he hates them, knocks him out, so no pain. Two out of three things lessened the pain to one degree or another.
One of the last things I told him before he drifted off was, "You can't say they don't care. Three different nurses came in to help you in three different ways. They might be slower than you want, but they cared."
He agreed.
One of the things I notice today was how much older he looked. Usually when his beard comes off, he looks ten years younger. Now he looks like he's in his 80's. Fortunately, I think a lot of that has to do with how much thinner he is, no teeth, and he's sick and tired, so more bags under his eyes than usual. (I think I know why there are no mirrors in ICU.)
Then Abing wrote me to thank me for advice given a few weeks ago. She said that I reminded her that God is our strength. Perfect timing, since I was just going to the hospital a few minutes later, so I handed it off to God. (Just because I know it's God's strength doesn't mean I remember that all the time. lol)
More good news! John sat all by himself for a little while today! (He can't sit up by himself yet, but no one held him upright while he was sitting. The amount of core muscle needed and the amount of mental coordination just to sit is much harder than we notice, until we can't.) He was thrilled.
I also let him lead the conversation most of the time. (Told one of my stories only to help him not focus so much on the agonizing pain of his hips.)
He's been getting new pajamas every day. (Well, okay. You can call them hospital gowns, but unlike the other hospital, these truly do look more like pajamas for men than gowns for women.) I told him he changes pajamas more often than I do now.
He laughed, and told the story that when the nurses were changing him, he said, "Shoot. I don't have any clean underwear." They laughed and told him they have no idea the last time he wore underwear, or if he ever did. He thought that one over and realized how funny it was.
So, he may get stuff wrong, but he's getting the hang of it himself. God's strength and ways really do make it easier than trying it my way.
Other good news. Yesterday, they were limiting him on how much he could sip. Today, he gets all the ice chips he wants. And he wants them all the time. It's to the point, it's worth more sitting up and feeling that agonizing pain in his hips than lie back, because if he lies back he can't have ice chips.
I think "ventilator" is past tense, but the nurse was very busy, so didn't have time to ask. (Two new arrivals and I saw one guy get to go home.)
But, I ran into some people I only knew from their backs before -- the two EMT's who rushed John to HUP in the ambulance. They recognized him immediately. They were shocked to see him sitting up. (I strongly suspect they thought they were transferring a dead man, just in case.) I remember them most when I was chasing after them when they took him into HUP. It was the only way to figure out where they were taking him.
John seemed upset that he didn't remember them. I told him he wasn't awake for that trip, so he couldn't remember.
His hip pain is excruciating. He was angry because "they won't do anything but tell me they can't do anything." Then I watched one nurse readjust him, but that didn't help, so she told the other nurse. That nurse got him flat on the back for some relief, and then readjusted his whole body, like he asked. (Still cool he can ask.) And then she had to put the bed back up to 30 degrees because she had already talked to his doctor about it. (The least amount of incline as he is getting food through the feeding tube.) That did help quite a bit, even though John didn't expect it to. And then a third nurse came in with pain meds, which, although he hates them, knocks him out, so no pain. Two out of three things lessened the pain to one degree or another.
One of the last things I told him before he drifted off was, "You can't say they don't care. Three different nurses came in to help you in three different ways. They might be slower than you want, but they cared."
He agreed.
One of the things I notice today was how much older he looked. Usually when his beard comes off, he looks ten years younger. Now he looks like he's in his 80's. Fortunately, I think a lot of that has to do with how much thinner he is, no teeth, and he's sick and tired, so more bags under his eyes than usual. (I think I know why there are no mirrors in ICU.)
D
amen Lynn,
we doing the hokie-pokie-watusie-mashed potatoes....
hey, some people dance when their psyched!!!
we doing the hokie-pokie-watusie-mashed potatoes....
hey, some people dance when their psyched!!!
D
Today, he brought up our nearest intersection. (When you live in the city, no one tells actual addresses. We talk nearest cross streets.) Then he told me our two next-door neighbor's names, and said Joe (one of those neighbors) was in Korea in the service. I didn't even know that. lol He finished it off by saying he knew where we live.
I asked him where he thought we lived the other day. He said he had no idea, his mind felt muddled.
He has no memory of either heart surgery. I told him something of what I went through that first day. (When a doctor uses the words "...or possibly a heart transplant," it really sticks in your head, like I was really signing his whole life away, when I said No on heart transplant. And then they came back later and I repeated myself, they told me he wasn't a candidate for one.) I told him about that day every time I thought he was awake enough to hear it. (Didn't want him to feel like no one ever told him. Funny. He feels like no one ever told him anyway. lol) I also did that two days ago, after he was utterly shocked he had open-heart surgery.
So, he thought he had bypass surgery. The nurses laughed at him, which confused him. Except I know it confused me too, because I always thought stents was bypass. So I told him stents were just putting something in the clog arteries then blowing it up, so it will hold the vessels open. If that didn't work, they'd have bypassed that artery all together by giving him new vessels. He was a steamfitter, so he gets bypass. You don't blow up metal in pipes though, so that one is a bit harder to grasp. The nurses laughed because they know this stuff. This is their field. I don't think most people get that until they have to get it.
Today was the first day (that he remembers. He complained about it last week too), that his chest hurts. I looked under the pajamas and touched the end of the scar and asked him if that was where he heart. He said yes, but by his face, he couldn't get why that would hurt, so I told him he is a member of the Zipper Club, except they do much better at stitching now so it's a very thin scar. (We're both very impressed how much the medical field has grown since we were young. Heart attack meant, at best, invalid for the rest of your short life. For both my grandfathers it meant death.
I also told him I was thankful he wasn't awake right afterward, because I heard the nurses prodding a patient to sit up and he was screaming in agony. He's had since Dec. 23rd to recover from the pain. Then I asked him which hurt worse, his hips or chest? Hips. Hands down. "In which case," I said, "you're going to have to pick your pain. Lots of you hurt. Put up with the minor and try and get help with the major." The nurse was behind him with her back toward us, putting a pillow in the case, but she nodded hard on that one.
I can't get over I can talk to my husband, and he can talk back! No, I mean I'm trying to adjust to that. I've spent weeks trying to guess what he's thinking, and find myself asking questions on and on until I can figure out Yes and No answers... and then I remember he can just answer. lol
Better yet, he tells me stuff without me even thinking of that, so I'm learning more of how his day goes. (His veins have disappeared. I held the record for how many sticks it took for a nurse to put a needle in my vein at 17 tried. (I looked like I was a junkie when I went to my SIL that day. lol) He almost doubled my record -- 35 sticks before they could get one in. They tried his hands. (Hands really hurt when needles are stuck in there.) They gave up and found a vein on the wrist. They put a port there, so everytime he turns his wrist, he feels the needle.
Funny story. He was clenching his hands over and over again. I feared they were numb. Nope. Last night he didn't have the strength to change the remote. He's practicing. I've asked the nurse to put on TV when I know there's a show on he likes. My first one was Adele's Christmas Special. The first show he remembers is Blue Bloods on Friday night. He was happy.
A good day. His hips didn't hurt until the last 15 minutes of feeding. (It takes an hour and he was in agony the entire time yesterday. He was going to be fed again an hour after I left. He elected to take the pain pill then to sleep through the feeding. Wise move, although he still hates that kind of pain pill.
I asked him where he thought we lived the other day. He said he had no idea, his mind felt muddled.
He has no memory of either heart surgery. I told him something of what I went through that first day. (When a doctor uses the words "...or possibly a heart transplant," it really sticks in your head, like I was really signing his whole life away, when I said No on heart transplant. And then they came back later and I repeated myself, they told me he wasn't a candidate for one.) I told him about that day every time I thought he was awake enough to hear it. (Didn't want him to feel like no one ever told him. Funny. He feels like no one ever told him anyway. lol) I also did that two days ago, after he was utterly shocked he had open-heart surgery.
So, he thought he had bypass surgery. The nurses laughed at him, which confused him. Except I know it confused me too, because I always thought stents was bypass. So I told him stents were just putting something in the clog arteries then blowing it up, so it will hold the vessels open. If that didn't work, they'd have bypassed that artery all together by giving him new vessels. He was a steamfitter, so he gets bypass. You don't blow up metal in pipes though, so that one is a bit harder to grasp. The nurses laughed because they know this stuff. This is their field. I don't think most people get that until they have to get it.
Today was the first day (that he remembers. He complained about it last week too), that his chest hurts. I looked under the pajamas and touched the end of the scar and asked him if that was where he heart. He said yes, but by his face, he couldn't get why that would hurt, so I told him he is a member of the Zipper Club, except they do much better at stitching now so it's a very thin scar. (We're both very impressed how much the medical field has grown since we were young. Heart attack meant, at best, invalid for the rest of your short life. For both my grandfathers it meant death.
I also told him I was thankful he wasn't awake right afterward, because I heard the nurses prodding a patient to sit up and he was screaming in agony. He's had since Dec. 23rd to recover from the pain. Then I asked him which hurt worse, his hips or chest? Hips. Hands down. "In which case," I said, "you're going to have to pick your pain. Lots of you hurt. Put up with the minor and try and get help with the major." The nurse was behind him with her back toward us, putting a pillow in the case, but she nodded hard on that one.
I can't get over I can talk to my husband, and he can talk back! No, I mean I'm trying to adjust to that. I've spent weeks trying to guess what he's thinking, and find myself asking questions on and on until I can figure out Yes and No answers... and then I remember he can just answer. lol
Better yet, he tells me stuff without me even thinking of that, so I'm learning more of how his day goes. (His veins have disappeared. I held the record for how many sticks it took for a nurse to put a needle in my vein at 17 tried. (I looked like I was a junkie when I went to my SIL that day. lol) He almost doubled my record -- 35 sticks before they could get one in. They tried his hands. (Hands really hurt when needles are stuck in there.) They gave up and found a vein on the wrist. They put a port there, so everytime he turns his wrist, he feels the needle.
Funny story. He was clenching his hands over and over again. I feared they were numb. Nope. Last night he didn't have the strength to change the remote. He's practicing. I've asked the nurse to put on TV when I know there's a show on he likes. My first one was Adele's Christmas Special. The first show he remembers is Blue Bloods on Friday night. He was happy.
A good day. His hips didn't hurt until the last 15 minutes of feeding. (It takes an hour and he was in agony the entire time yesterday. He was going to be fed again an hour after I left. He elected to take the pain pill then to sleep through the feeding. Wise move, although he still hates that kind of pain pill.
M
Hi Lyn sorry I've not been around for a while. There has been a few
"teething problems" while my aunt got settled in back at home.
She had practically forgotten where she lived or what the house looked like
due to the length of time. Then there was the adjusting to the carers coming
in 4 times a day.
I have been reading your entries and praying for you. It sounds as if John
is making progress even though it might sometimes be two steps forward
one back.
The various aches, pains John has, we need to pray about that.
The thought also occurred that Jesus knows exactly how John feels
and worse.
Jesus sees each emotion and each step you are both going through. He wants
you both to triumph and overcome this, He has plans for you both.
Praying for you both that your mourning will be turned to dancing...yes
dancing.....your frustration to delight.....your despair into the joy of the
Lord....your circumstances into a heart and soul which is able to rest
with perfect peace in Jesus knowing that your confidence lies in Jesus.
x
"teething problems" while my aunt got settled in back at home.
She had practically forgotten where she lived or what the house looked like
due to the length of time. Then there was the adjusting to the carers coming
in 4 times a day.
I have been reading your entries and praying for you. It sounds as if John
is making progress even though it might sometimes be two steps forward
one back.
The various aches, pains John has, we need to pray about that
.The thought also occurred that Jesus knows exactly how John feels
and worse.
Jesus sees each emotion and each step you are both going through. He wants
you both to triumph and overcome this, He has plans for you both.
Praying for you both that your mourning will be turned to dancing...yes
dancing.....your frustration to delight.....your despair into the joy of the
Lord....your circumstances into a heart and soul which is able to rest
with perfect peace in Jesus knowing that your confidence lies in Jesus.
x
D
I'm thinking Jesus never used some of the language John's been using. lol
(John didn't used to curse this much. Then again, he didn't used to be in this much pain or feel this helpless.)
Is your aunt's mixed-up mind getting better? Have you caught the new rhythm in life yet?
I though John's cobwebbed brain was going to progressively get better, but that's taken another back step today, so obviously that's two steps forward and one step back too.
I'm very connected to my teddy bears and John indulges in that with me. But, when we have nightmares, it's often we either lose one of the teddy bears or someone steals them. I mentioned two of the bears, and he tried to correct me by saying just one of their names. I went back to both of them. (They're more his teddy bears than mine, although, they're all mine. His connection is he makes them do and say funny things to make me laugh. And then I try to respond with my teddy bear saying something funny in return. This is how we try to make each other laugh every day.) He said the one was stolen. I recognized that as his recurring dream, and told him that. He was so relieved. Then he asked about my bear, and I told him he was fine too. Doubly relieved, so I'm guessing something happened to mine in a dream too.
Shortly after that, he was really angry that they cut his ear without his consent and now they won't give him ice chips. At first, I thought he was talking about his heart operation, but he said, "No. What's it called when they take your ear off?"
I quickly checked his ear -- no cuts. So I told him, "I don't know and hope I never have to find out, but your ear is fine. Another nightmare perhaps?"
His angry dissipated immediately. When the nurse came in, he was kind enough to tell the truth about ice chips. John bloated up because of all this, so he's on diuretics. Apparently, they keep track of how much fluids he gets, including ice chips. He isn't trying to be mean, but he really wants to make sure all that ice doesn't cause an infection. Not what we wanted to hear, except, unlike the last hospital, it was the truth. John thanked him for explaining.
My car made an eerie sound and an eerie thumping noise just as I was pulling into the hospital garage. At all sharp turns, it felt and sounded like those bumps they put on the side of the road to tell you when you've drifted off the road. I'm not mechanically inclined, so I asked John two questions:
1. Any idea what it is? I'm thinking the power steering fluid is leaking.
2. Is this something needed to be fixed immediately?
He said it wasn't the power steering, but it does need to get fixed immediately. (Holiday, so no mechanics working today.) Later he said it might be the power steering. lol
What makes that doubly funny is that might not have been his fuzzy mind. Both he and Dad know I know nothing about mechanical stuff. I know what can go wrong with cars only because most of my cars were old and just about everything that could go wrong with a car has gone wrong at one time or another, and I know what it feels and sounds like. Therefore, when something is wrong with the car, I guess what I think it is and both of them dismiss that. Until about five minutes later, when they come up with the exact same conclusion. lol
God has been protecting me big time. He's done small things for me. (Giving me a parking spot near my house only at times when I really need one. The other day, I was making a quick trip to the grocery store, except no one told the cashiers it's "quick." It took me half an hour to shop and an hour to check out -- and only one person in front of me -- because of one problem on top of another one. BUT, I was in a foul mood afterward, because I'm rushing, so I asked for God's help to get me out of the mood. First time ever -- I hit every green light on the road home. Might sound normal for you, but that road is the same road both of our stadiums are on, and also the same road as the docks are -- where all the food and supplies for eastern PA, Jersey and Delaware come in, so no small docks and lots of trucks -- so there is no way all those lights would stay green without God doing that for me. And always a place to park at the hospitals. Small stuff like that.) I was afraid to drive home, (especially after I felt a huge piece of metal hit right under my seat when I was pulling out and I only know how to get home on one of America's top 25 worst roads), so I asked him to protect me and protect all cars around me. The feeling/noise only happens at sharp turns. To get home, I only have to turn one corner and nothing happened when I did that. And then, not only could I park on my street, I could suburban park on my street. (99.5% of the time I park in my neighborhood, I have to parallel park. In the suburbs, if you want to park on the street, you just pull up to the curb and park. That's all I had to do today.)
I could use prayers that I can coordinate with the mechanic tomorrow AND see John. I could also use prayers it doesn't cost a mint to fix. I don't know what a transmission is, but I hear they're very expensive.
And here's an odd request. John is right so often, I assume everything he says is right. I've actually taken to counting the times he's wrong, and he's only been wrong three times since 1991. (The year I started counting, simply because no one can be right that often. lol) So, now that his brain has cobwebs, please pray I know when not to believe him. I really believe him that they cut his ear, until he said they took it off. I'd hate to believe him, if he tells me it's time to sell the car, simply because he said it is time to sell the car.
Also, he aches all over. It ebbs and flows, but unless I'm there to ask and tell him, he never notices when it lessens, making him very grumpy. (He's really a very nice guy. I think he averages two grumpies a year. And, yes. I am fully aware we aren't the same there. lol) Please pray that God makes him more aware when pain levels go down so he can enjoy that.
On the good news front, he's not getting oxycodone anymore. (He really hated that stuff.) They're going with a patch of Lidocaine, which numbs the area in pain without making his mind go foggy. But, he's also allergic to the sticky stuff on the patch. He's always been willing for that spot of skin to puff up, turn red, and itch like crazy, but the patch is in a spot where he can't scratch now. No allergic reaction would be nice.
(John didn't used to curse this much. Then again, he didn't used to be in this much pain or feel this helpless.)
Is your aunt's mixed-up mind getting better? Have you caught the new rhythm in life yet?
I though John's cobwebbed brain was going to progressively get better, but that's taken another back step today, so obviously that's two steps forward and one step back too.
I'm very connected to my teddy bears and John indulges in that with me. But, when we have nightmares, it's often we either lose one of the teddy bears or someone steals them. I mentioned two of the bears, and he tried to correct me by saying just one of their names. I went back to both of them. (They're more his teddy bears than mine, although, they're all mine. His connection is he makes them do and say funny things to make me laugh. And then I try to respond with my teddy bear saying something funny in return. This is how we try to make each other laugh every day.) He said the one was stolen. I recognized that as his recurring dream, and told him that. He was so relieved. Then he asked about my bear, and I told him he was fine too. Doubly relieved, so I'm guessing something happened to mine in a dream too.
Shortly after that, he was really angry that they cut his ear without his consent and now they won't give him ice chips. At first, I thought he was talking about his heart operation, but he said, "No. What's it called when they take your ear off?"
I quickly checked his ear -- no cuts. So I told him, "I don't know and hope I never have to find out, but your ear is fine. Another nightmare perhaps?"
His angry dissipated immediately. When the nurse came in, he was kind enough to tell the truth about ice chips. John bloated up because of all this, so he's on diuretics. Apparently, they keep track of how much fluids he gets, including ice chips. He isn't trying to be mean, but he really wants to make sure all that ice doesn't cause an infection. Not what we wanted to hear, except, unlike the last hospital, it was the truth. John thanked him for explaining.
My car made an eerie sound and an eerie thumping noise just as I was pulling into the hospital garage. At all sharp turns, it felt and sounded like those bumps they put on the side of the road to tell you when you've drifted off the road. I'm not mechanically inclined, so I asked John two questions:
1. Any idea what it is? I'm thinking the power steering fluid is leaking.
2. Is this something needed to be fixed immediately?
He said it wasn't the power steering, but it does need to get fixed immediately. (Holiday, so no mechanics working today.) Later he said it might be the power steering. lol
What makes that doubly funny is that might not have been his fuzzy mind. Both he and Dad know I know nothing about mechanical stuff. I know what can go wrong with cars only because most of my cars were old and just about everything that could go wrong with a car has gone wrong at one time or another, and I know what it feels and sounds like. Therefore, when something is wrong with the car, I guess what I think it is and both of them dismiss that. Until about five minutes later, when they come up with the exact same conclusion. lol
God has been protecting me big time. He's done small things for me. (Giving me a parking spot near my house only at times when I really need one. The other day, I was making a quick trip to the grocery store, except no one told the cashiers it's "quick." It took me half an hour to shop and an hour to check out -- and only one person in front of me -- because of one problem on top of another one. BUT, I was in a foul mood afterward, because I'm rushing, so I asked for God's help to get me out of the mood. First time ever -- I hit every green light on the road home. Might sound normal for you, but that road is the same road both of our stadiums are on, and also the same road as the docks are -- where all the food and supplies for eastern PA, Jersey and Delaware come in, so no small docks and lots of trucks -- so there is no way all those lights would stay green without God doing that for me. And always a place to park at the hospitals. Small stuff like that.) I was afraid to drive home, (especially after I felt a huge piece of metal hit right under my seat when I was pulling out and I only know how to get home on one of America's top 25 worst roads), so I asked him to protect me and protect all cars around me. The feeling/noise only happens at sharp turns. To get home, I only have to turn one corner and nothing happened when I did that. And then, not only could I park on my street, I could suburban park on my street. (99.5% of the time I park in my neighborhood, I have to parallel park. In the suburbs, if you want to park on the street, you just pull up to the curb and park. That's all I had to do today.)
I could use prayers that I can coordinate with the mechanic tomorrow AND see John. I could also use prayers it doesn't cost a mint to fix. I don't know what a transmission is, but I hear they're very expensive.
And here's an odd request. John is right so often, I assume everything he says is right. I've actually taken to counting the times he's wrong, and he's only been wrong three times since 1991. (The year I started counting, simply because no one can be right that often. lol) So, now that his brain has cobwebs, please pray I know when not to believe him. I really believe him that they cut his ear, until he said they took it off. I'd hate to believe him, if he tells me it's time to sell the car, simply because he said it is time to sell the car.
Also, he aches all over. It ebbs and flows, but unless I'm there to ask and tell him, he never notices when it lessens, making him very grumpy. (He's really a very nice guy. I think he averages two grumpies a year. And, yes. I am fully aware we aren't the same there. lol) Please pray that God makes him more aware when pain levels go down so he can enjoy that.
On the good news front, he's not getting oxycodone anymore. (He really hated that stuff.) They're going with a patch of Lidocaine, which numbs the area in pain without making his mind go foggy. But, he's also allergic to the sticky stuff on the patch. He's always been willing for that spot of skin to puff up, turn red, and itch like crazy, but the patch is in a spot where he can't scratch now. No allergic reaction would be nice.
Hi Lynn, Hope you to are looking after you self. my word for today in my email was give each other space, beleive it or not. we can neglect ourselves alot by loving someone to much and pushing them away, I realize it's different in John's case. But I understand. Rod had another strange turn last night, and I see it before it happens, it's worrying. But life goes on, and I want to keep praying for you and John. Take Care Lynn, And I hope I do encourage in my own way. xxx love Mandy
D
He's getting a lot of space. 22 hours a day without me. We haven't had this much time apart ever. Our home is very small and we're both disabled, so we are used to being near, even if we're doing our own thing. He used to hate it when I'd go visit Dad for half a day. Now I get it. Boy, the quiet is driving me to distraction. lol
O
Lynn,
many things you say move me to tears, but when I read how you give your Best Friend, Jesus,
the glory for the smallest things, and how much you appreciate His loving presence in all things,
especially in this time of over-whelming trials, well, my heart just melts and I feel so blessed
by your sharing this precious ministry of Love and strength, coupled with heartache.....
many things you say move me to tears, but when I read how you give your Best Friend, Jesus,
the glory for the smallest things, and how much you appreciate His loving presence in all things,
especially in this time of over-whelming trials, well, my heart just melts and I feel so blessed
by your sharing this precious ministry of Love and strength, coupled with heartache.....
D
First, heavy-duty prayer request:
John's social worker stopped by. When John gets moving enough, they're sending him to rehab. (It sounds like it's within weeks still, but hard to tell since John gave me much of the information... and then told me the blood pressure cuff was surgically implanted into his arm. (I checked. I was pretty sure that was a cobweb moment, at least. Nope. Just a cuff always on his arm, and it was expanding at that moment to take a reading.) That wasn't the most bizarre thing he said, but he did tell me the other one was so embarrassing he has never told anyone, including me, so I suspect, even if it was totally bizarre and simply couldn't/wouldn't happen, he still wouldn't want it repeated.
But the choices in rehabs are mostly outsourced with only one run by the VA. Even there, that one is a nursing home with one small wing for short-term patients, but that one wouldn't cost us any money, and the ones being outsourced would require a copay through Medicare after 20 days. Medicare's copay for such things is 20%. (How much does a short-term stay at a rehab center cost, including PT's and OT's, and full time care? John says -- and again, I'm never sure if he's truly aware, or speaking through his cobwebs now, but he did say some accurate things today too -- they were talking 5 weeks in the rehab place. We can't afford 15 days even if it were merely $100 a day. I suspect it's much more than that.)
BUT that only-place-run-by-the-VA rarely has openings, and they'd not only need one for John, also, they'd need one for him exactly when it's time for him to leave the VA hospital. So, big prayer request. We need God to work that one out for us, because no matter what, I cannot lift John up five steps into our house... and if he got in by doing the sit-slide thing up the steps, he'd never get to the point of leaving the house ever again. Not even into the backyard to enjoy the garden. (Steps out there too.)
So really, really need God to deal with that, because we can't, (unless I give up our savings for that, in which case he never has teeth again.)
Through this, I'm also seeing God's sense of humor. I told you how smoothly God got me home yesterday despite the car being broken. Well, I called the mechanics today. They can't fix it today, but they can look at it and tell me what it is and how much it will cost. (They suspect an axle. John freaked about that thinking we would be without a car ever again, but I reminded him how much my dad gave us -- which is just right for new teeth, and a little left over -- so he felt better. He also thought it would cost about $1000 or more. I just checked, looks like it will be under $500, which is in our budget.) BUT the mechanic didn't want to come down and take it up, for fear it might break down on the way there and crash. "It's one thing, if it's my car. But I don't want that to happen with your car."
So, I asked the obvious question, "What are the chances the same thing happens but I'M driving?" lol
Suddenly it was much less likely to happen, and all I had to do was drive up my nice straight street about a mile, and turn left twice to go around one block. A grand total of two turns. How hard can that be, right?
It wasn't, until there was street-construction right below where I wanted to go, and the only turn I could make was a right. And I'm in Philly where every side street is a one-way street, so I had to drive two more blocks to go north again. And then the street I was supposed to turn on didn't exist two blocks over, so I drove too far north before making that turn. And then that last turn didn't exist. (Sometimes they block roads by building buildings right where a street should be, so continue that street only after the building.) I lost count on how many turns I had to make to find that one small street again after about 12 turns.
BUT, not once did my car make that noise or give me that feeling something was drastically wrong below it. It felt like God was telling me to go with the flow when it's not desperate, and he'd take care of the real desperates. I could almost hear the laugh Nelson from The Simpsons makes -- Ha ha!
That's God's humor! Got to say, it feels familiar. (It's my kind of humor. lol)
Still waiting for the mechanics to tell me what's wrong, but I've googled it. I'm no mechanic, but all the choices seemed to be within our budget, even if I might need to gulp once or twice. (Let's be real. If we want a new gadget or computer and it costs $700, it's reasonable. If it's fixing some mechanical gizmo we never see and it's not fun to play with -- a leaky pipe, a part on the car, or something goes wrong with a heater -- then $700 suddenly becomes a ridiculous price. This is the same concept whether our annual income is $30,000 a year or $30 million a year. Also, God's sense of humor. lol)
And, least you think nothing exciting happened with John today, He's exhausted from exercising. The PT and OT stopped by consecutively. (John's cobwebs don't make that story consistent with what the nurse thought, but it really doesn't matter who came first.) Somebody had him sit twice. Sitting is very hard work for him right now, but TWICE! Very exciting! Then the next person, who was 5 foot tall and maybe 90 pounds, (according to John) insisted he stand. Stand! This is heady expectations in my mind, but I know it has to happen fairly soon. She promised he couldn't fall because she'd help him. (John is 6' 1" and around 250ish. I'd love to have seen her keep her word on making sure he didn't fall. I would have dubbed her Ant Woman, simply because only ants can lift more than twice their weight. lol) But he couldn't stand.
I don't care. He got far enough that he tried. And both of his nurses said he'd stand tomorrow. (And one of them told me OT and PT should come together to do things like this, plus they have some kind of machine that will help him stand, so I truly believe he will stand tomorrow.)
One big improvement though. Up until today, any time they would reposition John, they were doing all the work. (It has taken two or three of them to do that too.) They helped him scootchy to one side of the bed, but after that he was on his own for rolling sideways. And he did. He rolled over and held onto the sidebar. The only reason it wasn't enough is because their pillows slip easily. When they can find him a wedge, he will be rolling himself and keeping the pose. Last week, raising an arm was close to impossible for him. Now he's lifting half his weight with his hand and arm. I suspect by this time next week, he moves when he wants!
John's social worker stopped by. When John gets moving enough, they're sending him to rehab. (It sounds like it's within weeks still, but hard to tell since John gave me much of the information... and then told me the blood pressure cuff was surgically implanted into his arm. (I checked. I was pretty sure that was a cobweb moment, at least. Nope. Just a cuff always on his arm, and it was expanding at that moment to take a reading.) That wasn't the most bizarre thing he said, but he did tell me the other one was so embarrassing he has never told anyone, including me, so I suspect, even if it was totally bizarre and simply couldn't/wouldn't happen, he still wouldn't want it repeated.
But the choices in rehabs are mostly outsourced with only one run by the VA. Even there, that one is a nursing home with one small wing for short-term patients, but that one wouldn't cost us any money, and the ones being outsourced would require a copay through Medicare after 20 days. Medicare's copay for such things is 20%. (How much does a short-term stay at a rehab center cost, including PT's and OT's, and full time care? John says -- and again, I'm never sure if he's truly aware, or speaking through his cobwebs now, but he did say some accurate things today too -- they were talking 5 weeks in the rehab place. We can't afford 15 days even if it were merely $100 a day. I suspect it's much more than that.)
BUT that only-place-run-by-the-VA rarely has openings, and they'd not only need one for John, also, they'd need one for him exactly when it's time for him to leave the VA hospital. So, big prayer request. We need God to work that one out for us, because no matter what, I cannot lift John up five steps into our house... and if he got in by doing the sit-slide thing up the steps, he'd never get to the point of leaving the house ever again. Not even into the backyard to enjoy the garden. (Steps out there too.)
So really, really need God to deal with that, because we can't, (unless I give up our savings for that, in which case he never has teeth again.)
Through this, I'm also seeing God's sense of humor. I told you how smoothly God got me home yesterday despite the car being broken. Well, I called the mechanics today. They can't fix it today, but they can look at it and tell me what it is and how much it will cost. (They suspect an axle. John freaked about that thinking we would be without a car ever again, but I reminded him how much my dad gave us -- which is just right for new teeth, and a little left over -- so he felt better. He also thought it would cost about $1000 or more. I just checked, looks like it will be under $500, which is in our budget.) BUT the mechanic didn't want to come down and take it up, for fear it might break down on the way there and crash. "It's one thing, if it's my car. But I don't want that to happen with your car."
So, I asked the obvious question, "What are the chances the same thing happens but I'M driving?" lol
Suddenly it was much less likely to happen, and all I had to do was drive up my nice straight street about a mile, and turn left twice to go around one block. A grand total of two turns. How hard can that be, right?
It wasn't, until there was street-construction right below where I wanted to go, and the only turn I could make was a right. And I'm in Philly where every side street is a one-way street, so I had to drive two more blocks to go north again. And then the street I was supposed to turn on didn't exist two blocks over, so I drove too far north before making that turn. And then that last turn didn't exist. (Sometimes they block roads by building buildings right where a street should be, so continue that street only after the building.) I lost count on how many turns I had to make to find that one small street again after about 12 turns.
BUT, not once did my car make that noise or give me that feeling something was drastically wrong below it. It felt like God was telling me to go with the flow when it's not desperate, and he'd take care of the real desperates. I could almost hear the laugh Nelson from The Simpsons makes -- Ha ha!
That's God's humor! Got to say, it feels familiar. (It's my kind of humor. lol)
Still waiting for the mechanics to tell me what's wrong, but I've googled it. I'm no mechanic, but all the choices seemed to be within our budget, even if I might need to gulp once or twice. (Let's be real. If we want a new gadget or computer and it costs $700, it's reasonable. If it's fixing some mechanical gizmo we never see and it's not fun to play with -- a leaky pipe, a part on the car, or something goes wrong with a heater -- then $700 suddenly becomes a ridiculous price. This is the same concept whether our annual income is $30,000 a year or $30 million a year. Also, God's sense of humor. lol)
And, least you think nothing exciting happened with John today, He's exhausted from exercising. The PT and OT stopped by consecutively. (John's cobwebs don't make that story consistent with what the nurse thought, but it really doesn't matter who came first.) Somebody had him sit twice. Sitting is very hard work for him right now, but TWICE! Very exciting! Then the next person, who was 5 foot tall and maybe 90 pounds, (according to John) insisted he stand. Stand! This is heady expectations in my mind, but I know it has to happen fairly soon. She promised he couldn't fall because she'd help him. (John is 6' 1" and around 250ish. I'd love to have seen her keep her word on making sure he didn't fall. I would have dubbed her Ant Woman, simply because only ants can lift more than twice their weight. lol) But he couldn't stand.
I don't care. He got far enough that he tried. And both of his nurses said he'd stand tomorrow. (And one of them told me OT and PT should come together to do things like this, plus they have some kind of machine that will help him stand, so I truly believe he will stand tomorrow.)
One big improvement though. Up until today, any time they would reposition John, they were doing all the work. (It has taken two or three of them to do that too.) They helped him scootchy to one side of the bed, but after that he was on his own for rolling sideways. And he did. He rolled over and held onto the sidebar. The only reason it wasn't enough is because their pillows slip easily. When they can find him a wedge, he will be rolling himself and keeping the pose. Last week, raising an arm was close to impossible for him. Now he's lifting half his weight with his hand and arm. I suspect by this time next week, he moves when he wants!
D
I'm a bit slow figuring things out, but I just learned two huge things in the last 24 hours.
1. They put John on a dialysis machine 24/7 a few weeks ago because his kidneys shut down. No one ever told me this. Matter of fact, the day after he was put on the machine (and first time I saw him on it) his kidney doctor told me his kidneys are "good." Two days later he told me "they have plateaued." Only after further questioning did I learn if was a very high plateau.
2. John has hospital-induced, hypoactive delirium. His bizarre memories and beliefs the hospital has been systematically mutilating him isn't no big deal. It's a really big deal. If it isn't conquered, he can come home like this. He could die. And the best way to stop the delirium can't happen. The best way is if I can stay with him, particularly at nighttime when it gets worse. I can't. I've been pushing myself further than I think I could go, and I'm barely making it physically. I can bring things from home for him, but part of his problem is he thinks (even before all this happened), that anything left over night in his room at the VA will be stolen. He already thinks someone stole my teddy bears and our computers. (Yesterday, I found out he thought someone stole our computers a couple of months ago. He's been worried how I'm surviving without a computer. I've told him nothing has been stolen, but delirium. What I say, and reality, may not stick with him.)
Many of the articles talk about the difference between dementia and delirium. I know dementia. This isn't it. It is equal to Stage Two dementia in the depths and scopes of that disease, which explains why my sweet husband has turned grumpy and prone to his own created conspiracy theories.
Just when I thought he was coming out of danger. It's back. And in a new way. Physically, he was severely disabled before this hit. I can't take that it might be mentally too.
1. They put John on a dialysis machine 24/7 a few weeks ago because his kidneys shut down. No one ever told me this. Matter of fact, the day after he was put on the machine (and first time I saw him on it) his kidney doctor told me his kidneys are "good." Two days later he told me "they have plateaued." Only after further questioning did I learn if was a very high plateau.
2. John has hospital-induced, hypoactive delirium. His bizarre memories and beliefs the hospital has been systematically mutilating him isn't no big deal. It's a really big deal. If it isn't conquered, he can come home like this. He could die. And the best way to stop the delirium can't happen. The best way is if I can stay with him, particularly at nighttime when it gets worse. I can't. I've been pushing myself further than I think I could go, and I'm barely making it physically. I can bring things from home for him, but part of his problem is he thinks (even before all this happened), that anything left over night in his room at the VA will be stolen. He already thinks someone stole my teddy bears and our computers. (Yesterday, I found out he thought someone stole our computers a couple of months ago. He's been worried how I'm surviving without a computer. I've told him nothing has been stolen, but delirium. What I say, and reality, may not stick with him.)
Many of the articles talk about the difference between dementia and delirium. I know dementia. This isn't it. It is equal to Stage Two dementia in the depths and scopes of that disease, which explains why my sweet husband has turned grumpy and prone to his own created conspiracy theories.
Just when I thought he was coming out of danger. It's back. And in a new way. Physically, he was severely disabled before this hit. I can't take that it might be mentally too.
O
Lynn,
John is definitely not out of his mind...yes he is acting like it, but this is mainly because of
over-medication and his being 'out-of-control' in his normal territory...
we have experienced, seen this scenario play-out many times over the years..it is truly mainly,
just a matter of 'adjusting' the medications...some are extremely sensitive and some can
take a really large amount...to make a point, I, wife, can take so much more meds that my
over 6' cowboy hubbby, I'm a size 4.
taking charge in a hospital setting can be a great challenge, but know this, it can determine
life or death.....
many doctor simply refuse to 'reduce' meds or admit that they have 'over-meded'.....simple as that.
there have been many times in our past where we have had to 'over-ride' the docs, even with those
who were not our relatives in order to help our relatives or friends, 'regain' their sanity....
they DON'T care, they are just going by the BOOK.....
John is definitely not out of his mind...yes he is acting like it, but this is mainly because of
over-medication and his being 'out-of-control' in his normal territory...
we have experienced, seen this scenario play-out many times over the years..it is truly mainly,
just a matter of 'adjusting' the medications...some are extremely sensitive and some can
take a really large amount...to make a point, I, wife, can take so much more meds that my
over 6' cowboy hubbby, I'm a size 4.
taking charge in a hospital setting can be a great challenge, but know this, it can determine
life or death.....
many doctor simply refuse to 'reduce' meds or admit that they have 'over-meded'.....simple as that.
there have been many times in our past where we have had to 'over-ride' the docs, even with those
who were not our relatives in order to help our relatives or friends, 'regain' their sanity....
they DON'T care, they are just going by the BOOK.....