It has been a long week. I finally got the social worker on the phone, pnly to be told "she oesn't get medical updates" to "talk to the nurses' station".Guess the honeymoon's over!
In checking with the nurses station, I am told there have been no additional notes on my husband's seizure, except to increase his meds. I ask if there are any results from the EEG, nothing! I ask if they can get the results, and they tell me they can call the hospital and ask, but I should call the doctor. I ask them for his name, and find he has an office downtown.
I arrive to visit Craig expecting the same catatonic man I saw last visit, only to find him extremely alert, conversive, mobile and only slightly confused. We have our ritual chocolate pudding, and I give him the YooHoo drink box, but he cannot negotiate the straw, so I squeeze it into a paper cup.
His roommate is gone now, so he is alone in the room. After a bit of strange "conversation", he tells me he has to get to the car and get back to work. "Nothing is free you know!".
I am relieved that he seems to have recovered so well from the seizure and meds change.
I actually perform some "normal" household cleaning projects over the weekend. I actually anticipate the next visit with Craig with anxiety. The last time he seemed really up, was when he had the seizure during the night.
This visit was very different. He does recognize my voice, seems mildly co-operative....until we get to his room.
Now I have to chase him down to eat the pudding. He cannot negotiate the spoon or pudding cup. I feed it to him. He keeps grabbing my sleeve, and at one point tries to pull my thumb into his mouth. I get him onto the bed, and as usual, he falls backwards in an odd position. After a few minutes, I decide to try to swing his legs onto the bed and he yelps, saying that hurts. Then tells me the cat scratched him. I tell him there is no cat there, and now he says it is a dog. No sense arguing.
After trying vainly to talk to him, I notice he is making jerking movements intermittently. I ask if he wants to sit up. He tries, but can't get all the way upright. I offer help, but he is dead weight and fights me trying to sit him up. I ask him if his back hurts an he says yes. I tell him I am leaving and try to kiss him goodbye, but he wants nothing to do with it. I tell him I love him, no response. I gather my things, turn to leave, and tell him again I love him. He looks at me and says "bye Peg". Then starts to mumble about ingratiation.
I stop at the nurses' station and tell them about his back, but tell them he is irritated right now, so might want to wait a bit to check his back.
I actually have a nice chat with the nurses for the first time. I leave defeated again.
I hate the up and down of this disease. If I expect the worst each time, I will miss the few good pieces there are left. But if I let the good moments lift my expectations, I am always so sadly disappointed. Just like flipping a coin.....
Monday, July 20, 2009
Monday, July 13, 2009
At wits end
It's been a week since my last blog entry because of the events of the past week.
On Thursday, I made my usual trip to see Craig. I was surprised and encouraged when I arrived.
He was so lucid and friendly! Knew who I was, even commented on a news story on the tv. After being there for a while, he kind of laid back on the bed and started pulling his legs up into a kind of fetal position. I asked if his back hurt, and he said "Not anymore". After a couple of kisses and hugs,
he drifted off to sleep.
I was wakened at 2am to my son telling me I needed to take the phone call. It was the nurse from the nursing home telling me that Craig woke up and said he needed to use the toilet, and that they had put him on the toilet, only to have him yell loudly and start to seize. She said they had gotten him to the floor safely, but the seizure had lasted 3 minutes ( a long one), and that the doctor wanted to send him to the hospital. I quickly agreed. Why would you even have to ask?
In the morning, after laying awake most of the night, I called the nursing home, and they told me to call the ER.
After 3 hang ups, I finally asked for admissions and was told he was admitted, and they transferred the call to his room. Now forgive me if I seem like an idiot, but why would you send a call to a room with a sedated Alzheimer's patient?
I hang up and call back, asking for the nurses station. I ask the nurse why he was admitted, and she says I will have to ask the doctor. I ask if I can leave my cell number, and she reluctantly takes it down.
Now I do not know the name of the doctor who is seeing him, and wait for a call. I dress and go to work, hoping to avoid yet another day with no pay. I explain to my boss what has happened and bury myself in the work.
Several hours later, the hospital nurse calls to say that they are trying to schedule an EEG, and that if they can get it done today they will, but if they can't they will send him back to the nursing home.
Several more hours later, the hopital social worker calls to say he is scheduled for 1pm, and that theu will return him to the nursing home around 3pm. For the first time I am speaking to someone who actually gives me some information! I ask how long until the results are back and she says later that day, or Monday.
I wait to get a call saying Craig has arrived at the nursing home. Silly me!
I go to the nursing home on Sunday after I am sure he is rested and no longer sedated from his hospital trip. I stop at the nurses station, and ask how he is. After looking around at each other,
one of the CNA's says he was finally up today. That is ominous.
When I arrive in his room, his roommate is gone home, and Craig is sleeping. I wake him and tell him I brought coffee and pudding. He looks at me with dead eyes. I realize he has no idea who I am. After a lot of prompting, I get him to sit up. He stands and stares for a minute and heads for the door. I ask him where he is going and he says to the car. A blank stare follows as I tell him he has no car. he shuffles off out of the room several times, and I return him each time, finally getting him to focus on the coffee I brought.
Iplace it in his hand, and as I start to release the cup, realize he is not gripping it. My hand under the cup, we finally get it to his mouth, and he turns to leave again. Another redirect to the pudding cups. He tries to pick up the spoon, but cannot grip it, and starts to dip his fingers in the pudding. I retrieve paper towels from the bathroom, clean his fingers and place the spoon in his fingers. He stirs the pudding into an almost liquid, pulls the spoon out, and pudding runs all over him and the floor.
I start to wipe the floor, and realize he is falling back on the bed.I take the pudding cup and see that it has poured onto his stomach. More clean up.
By this time, he is starting to close his eyes again. I hold his hand and he grips back. I cover him with his blankets, his hands are cold. My eyes fill with tears as I look at this man who has been so strong willed and independent all his life reduced to this shell of his former self.
Then I see him looking at my face and his eyes start to water too. He closes his eyes and falls asleep. I have to leave before I start to blubber.
Monday first thing, I call the social worker at the nursing home.In a meeting, leave a message.
I want to talk to the doctor, need to know if the condition he is in is due to the seizure, the meds, or another advancement in his condition. I want to know what the EEG found.
I sit at my desk waiting for the phone to ring, afraid to use the restroom, afraid I'll miss the call.
At 4pm, I call again, and am told she has left for the day. I think she is avoiding me by leaving early.
How can people not understand the need to know what is happening? What if it was YOUR Husband/Wife/Mother/Father/Brother/ Sister/Son/Daughter? Wouldn't you lose your mind worrying? Wouldn't you be afraid the next call would be one you could do nothing about?
My Sister and Brother say I should report the entire bunch for the treatment ( or lack of) that we are receiving. I just want him to have a little care and dignity. Just because he can't complain doesn't mean he shouldn't get the same respect as anyone else.
We will see what happens tomorrow. Maybe that will be the day I finally get pissed off enough to call the ombudsperson.
On Thursday, I made my usual trip to see Craig. I was surprised and encouraged when I arrived.
He was so lucid and friendly! Knew who I was, even commented on a news story on the tv. After being there for a while, he kind of laid back on the bed and started pulling his legs up into a kind of fetal position. I asked if his back hurt, and he said "Not anymore". After a couple of kisses and hugs,
he drifted off to sleep.
I was wakened at 2am to my son telling me I needed to take the phone call. It was the nurse from the nursing home telling me that Craig woke up and said he needed to use the toilet, and that they had put him on the toilet, only to have him yell loudly and start to seize. She said they had gotten him to the floor safely, but the seizure had lasted 3 minutes ( a long one), and that the doctor wanted to send him to the hospital. I quickly agreed. Why would you even have to ask?
In the morning, after laying awake most of the night, I called the nursing home, and they told me to call the ER.
After 3 hang ups, I finally asked for admissions and was told he was admitted, and they transferred the call to his room. Now forgive me if I seem like an idiot, but why would you send a call to a room with a sedated Alzheimer's patient?
I hang up and call back, asking for the nurses station. I ask the nurse why he was admitted, and she says I will have to ask the doctor. I ask if I can leave my cell number, and she reluctantly takes it down.
Now I do not know the name of the doctor who is seeing him, and wait for a call. I dress and go to work, hoping to avoid yet another day with no pay. I explain to my boss what has happened and bury myself in the work.
Several hours later, the hospital nurse calls to say that they are trying to schedule an EEG, and that if they can get it done today they will, but if they can't they will send him back to the nursing home.
Several more hours later, the hopital social worker calls to say he is scheduled for 1pm, and that theu will return him to the nursing home around 3pm. For the first time I am speaking to someone who actually gives me some information! I ask how long until the results are back and she says later that day, or Monday.
I wait to get a call saying Craig has arrived at the nursing home. Silly me!
I go to the nursing home on Sunday after I am sure he is rested and no longer sedated from his hospital trip. I stop at the nurses station, and ask how he is. After looking around at each other,
one of the CNA's says he was finally up today. That is ominous.
When I arrive in his room, his roommate is gone home, and Craig is sleeping. I wake him and tell him I brought coffee and pudding. He looks at me with dead eyes. I realize he has no idea who I am. After a lot of prompting, I get him to sit up. He stands and stares for a minute and heads for the door. I ask him where he is going and he says to the car. A blank stare follows as I tell him he has no car. he shuffles off out of the room several times, and I return him each time, finally getting him to focus on the coffee I brought.
Iplace it in his hand, and as I start to release the cup, realize he is not gripping it. My hand under the cup, we finally get it to his mouth, and he turns to leave again. Another redirect to the pudding cups. He tries to pick up the spoon, but cannot grip it, and starts to dip his fingers in the pudding. I retrieve paper towels from the bathroom, clean his fingers and place the spoon in his fingers. He stirs the pudding into an almost liquid, pulls the spoon out, and pudding runs all over him and the floor.
I start to wipe the floor, and realize he is falling back on the bed.I take the pudding cup and see that it has poured onto his stomach. More clean up.
By this time, he is starting to close his eyes again. I hold his hand and he grips back. I cover him with his blankets, his hands are cold. My eyes fill with tears as I look at this man who has been so strong willed and independent all his life reduced to this shell of his former self.
Then I see him looking at my face and his eyes start to water too. He closes his eyes and falls asleep. I have to leave before I start to blubber.
Monday first thing, I call the social worker at the nursing home.In a meeting, leave a message.
I want to talk to the doctor, need to know if the condition he is in is due to the seizure, the meds, or another advancement in his condition. I want to know what the EEG found.
I sit at my desk waiting for the phone to ring, afraid to use the restroom, afraid I'll miss the call.
At 4pm, I call again, and am told she has left for the day. I think she is avoiding me by leaving early.
How can people not understand the need to know what is happening? What if it was YOUR Husband/Wife/Mother/Father/Brother/ Sister/Son/Daughter? Wouldn't you lose your mind worrying? Wouldn't you be afraid the next call would be one you could do nothing about?
My Sister and Brother say I should report the entire bunch for the treatment ( or lack of) that we are receiving. I just want him to have a little care and dignity. Just because he can't complain doesn't mean he shouldn't get the same respect as anyone else.
We will see what happens tomorrow. Maybe that will be the day I finally get pissed off enough to call the ombudsperson.
Tuesday, July 7, 2009
The Birthday came....and went
For me , birthdays are special.
Being born on Christmas Eve, and having my birthday forgotten, ignored, combined with Christmas, makes it a special event to me.
I spent the weekend plotting and planning, worrying what I could give for a gift that he would be able to appreciate. I also tried to decide whether to take the time off work to spend the day with him, on what might be the last birthday he will remember. I tried in vain to talk the boys into
visiting their Dad.
At the last minute, I called work to tell them I would not be in, and gathered up the gifts, went to the bakery, and headed off to the nursing home, pleased with myself that I was going to make his birthday special.
When I arrived, Craig was asleep, which gave me time to decorate the room and the pie and cake I brought. I also brought the camcorder, thinking I would take videos of him opening the gifts and smiling.
Wrong again! When he woke, he had no idea who I was. I asked if he wanted pie, no problem there! His roommate and I sang "Happy Birthday", as they ate the pie, the Craig had cake, chocolate milk and Peach smoothie. I tried to interest him in the gifts, but he just laughed that
I'm confused laugh, as I pulled the presents out and showed them to him.
Even the cards from the boys and me were stared at and dropped. I tried to give him a kiss and
no co-operation....guess he thought his wife would get mad.
The aid came in and introduced herself. She said he tells her everyday that his wife is coming.
I tell her it's too bad he doesn't know she's there......
He's off and running again! I clean up, after unsuccessfully trying to get even the nursing home staff to have cake with us., tuck my tail between my legs and retreat.
On the way down the hall, Craig looks at me and tells me my waist is too big....add insult to injury.....
At home, I sit on his bed, look around and lay down and cry myself to sleep. I can only imagine what he must think, since his "wife" didn't come for his birthday.
Not that our marriage was perfect, but before this disease, we did pretty good. There has to something when you've been together 36 years. I miss my friend as much, maybe more than my husband.
Being born on Christmas Eve, and having my birthday forgotten, ignored, combined with Christmas, makes it a special event to me.
I spent the weekend plotting and planning, worrying what I could give for a gift that he would be able to appreciate. I also tried to decide whether to take the time off work to spend the day with him, on what might be the last birthday he will remember. I tried in vain to talk the boys into
visiting their Dad.
At the last minute, I called work to tell them I would not be in, and gathered up the gifts, went to the bakery, and headed off to the nursing home, pleased with myself that I was going to make his birthday special.
When I arrived, Craig was asleep, which gave me time to decorate the room and the pie and cake I brought. I also brought the camcorder, thinking I would take videos of him opening the gifts and smiling.
Wrong again! When he woke, he had no idea who I was. I asked if he wanted pie, no problem there! His roommate and I sang "Happy Birthday", as they ate the pie, the Craig had cake, chocolate milk and Peach smoothie. I tried to interest him in the gifts, but he just laughed that
I'm confused laugh, as I pulled the presents out and showed them to him.
Even the cards from the boys and me were stared at and dropped. I tried to give him a kiss and
no co-operation....guess he thought his wife would get mad.
The aid came in and introduced herself. She said he tells her everyday that his wife is coming.
I tell her it's too bad he doesn't know she's there......
He's off and running again! I clean up, after unsuccessfully trying to get even the nursing home staff to have cake with us., tuck my tail between my legs and retreat.
On the way down the hall, Craig looks at me and tells me my waist is too big....add insult to injury.....
At home, I sit on his bed, look around and lay down and cry myself to sleep. I can only imagine what he must think, since his "wife" didn't come for his birthday.
Not that our marriage was perfect, but before this disease, we did pretty good. There has to something when you've been together 36 years. I miss my friend as much, maybe more than my husband.
Thursday, July 2, 2009
I'm so confused...
It's been a while since my last post. Several visits since the last post have me so confused.
Monday, Craig was asleep when I arrived.I woke him, he looked at me for a minute, and I held his hand as he drifted back to sleep.Left the cookies and YooHoo I brought for him.
Made myself wait until Thursday to visit again. His roommate will be leaving in a few weeks,
and I will have no outside inout into his behavior when I am not there.
Craig seems in great spirits as I arrive and find him almost right at the entry door. He puts his arm around my waist and we walk to his room.He eats the pudding I brought for him with a smile on his face.My spirits are lifting.
The charge nurse comes in and hands Craig his meds, and reality smacks me ...
" I don't take any pills" The argument ensues, and the nurse says he will try again later.
Now the familiar behaviors come rushing to the surface again, incoherent phrases, repetitive
small finger motions, the inability to sit or stand still.
I ask him what kind of cake and ice cream he wants for his birthday, on the sixth try, I get
:banana cream pie". Now I tell him I have to leave and he walks me down the hall asking me
if today is someone's birthday. No, Craig, Monday is your birthday. You will be 56.
I feel like the directions on the shampoo bottle, repeat, repeat, repeat.
Hopefully, he will take his meds later. I see his up and down swings and wonder, is the medicine really helping? Or are we just dragging out the suffering for him. I know that he would be horrified at his situation if he was still able to understand it. He would never want to live like this.
I remember him telling me many times that his father told him there were 3 places you never wanted to go; prison, the military and a mental hospital... because they own you in all 3.
I think Craig would add one to that....
Monday, Craig was asleep when I arrived.I woke him, he looked at me for a minute, and I held his hand as he drifted back to sleep.Left the cookies and YooHoo I brought for him.
Made myself wait until Thursday to visit again. His roommate will be leaving in a few weeks,
and I will have no outside inout into his behavior when I am not there.
Craig seems in great spirits as I arrive and find him almost right at the entry door. He puts his arm around my waist and we walk to his room.He eats the pudding I brought for him with a smile on his face.My spirits are lifting.
The charge nurse comes in and hands Craig his meds, and reality smacks me ...
" I don't take any pills" The argument ensues, and the nurse says he will try again later.
Now the familiar behaviors come rushing to the surface again, incoherent phrases, repetitive
small finger motions, the inability to sit or stand still.
I ask him what kind of cake and ice cream he wants for his birthday, on the sixth try, I get
:banana cream pie". Now I tell him I have to leave and he walks me down the hall asking me
if today is someone's birthday. No, Craig, Monday is your birthday. You will be 56.
I feel like the directions on the shampoo bottle, repeat, repeat, repeat.
Hopefully, he will take his meds later. I see his up and down swings and wonder, is the medicine really helping? Or are we just dragging out the suffering for him. I know that he would be horrified at his situation if he was still able to understand it. He would never want to live like this.
I remember him telling me many times that his father told him there were 3 places you never wanted to go; prison, the military and a mental hospital... because they own you in all 3.
I think Craig would add one to that....
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