It has been many months since I last posted, and much has happened. We moved from PA to Ohio, where our boys were raised, I went thru a period of deep depression, where I was out of work before hand. The psychiatrist told me I had to start thinking about taking care of me, and think about what would happen when this journey ended.
This prompted the move, along with a change back to the job I had for 17 years. God was watching over us, as I was able to find a job thru an old co-worker, for which I am very grateful.
We moved Craig soon after we moved, and at that time Hospice discharged him saying he had stabilized his weight loss and had not had a seizure in months. Everything seemed to be going along smoothly, when Craig started to refuse meds and food.
I bought special food and beverages, hoping to get him back on track, but each day it became more apparent he had decided to refuse. Hospice was called in, and after much discussion, it was decided not to give IV fluids, or a feeding tube.
I informed his brother, who had not spoken to us in many years, and after a very disagreeable conversation, he made a short trip to see Craig.I truly believe he only did it so he wouldn't look bad.
Arguments aside, the boys and I agreed that if Craig did not want to eat or drink, we would honor his choice unselfishly.
Craig lasted 3 weeks in this state before he passed, and I can tell you that it was the hardest thing I have ever done to watch him seize over and over, to stay with him constantly,knowing I could do nothing.
I spent the last few days with him trying to cool his fever, asking the nurses for his next dose of morphine, at times holding his hand and stroking his head, at times crawling in with him to hold him in my arms.
The time since his passing has been hard too.Paperwork, funerals, lost wages, informing his stepmother, answering condolences, and awaiting his ashes.
Now I am trying to figure out how I move forward after so many years of my world centering around taking care of him. And how do I help the boys to get on with the lives they have deferred to help with their Dad.
Father's day was 2 weeks after Craig's passing, and it was hard, but his birthday is July 6th, and since I have
not yet gotten past the numbness of his passing, I am sure it will trigger a flood of emotion.
Perhaps a memorial on his birthday, which I could not do when he passed due to funding issues will help me to finally mourn like I have been unable to do yet. I'm not sure if I am broken, but I haven't really cried much, except when people ask about his passing. And I have tried not to talk about it. I am afraid I will lose all control and melt into a puddle from which I will not be able to recover.
All I know is, I am trying to remember him as the love of my life, not the shell I sat with as he fought for life.
And I really need a hug......
Sunday, June 27, 2010
Monday, March 15, 2010
Can't believe it!
I thought after the observation of last weeks events, something would be done. Went to the NH over the weekend, and was told they added twice daily doses of tylenol. No other orders.
Told the nurse I wanted to talk to the doctor. Also told her that the symptoms I described to my online doctor friend indicated he may have tardiv dyskenesia. Now nurse is telling me can't be that.
Went to the NH this morning and spoke to the NH admin, who also called down head of nursing. Explained about the incident and the floor nurse who lied about meds. Told them I was concerned not only about Craig , but others whose meds were life sustaining. I was told they would review the chart, check the med records and get back to me.
Craig seems to be more relaxed, and is snoring while sleeping now. But also seems to be having trouble with swallowing his spit and coughing again. Pale and cold. Unable to wake him in the 2 hours I was there.
Time to speak to the doc again.
Told the nurse I wanted to talk to the doctor. Also told her that the symptoms I described to my online doctor friend indicated he may have tardiv dyskenesia. Now nurse is telling me can't be that.
Went to the NH this morning and spoke to the NH admin, who also called down head of nursing. Explained about the incident and the floor nurse who lied about meds. Told them I was concerned not only about Craig , but others whose meds were life sustaining. I was told they would review the chart, check the med records and get back to me.
Craig seems to be more relaxed, and is snoring while sleeping now. But also seems to be having trouble with swallowing his spit and coughing again. Pale and cold. Unable to wake him in the 2 hours I was there.
Time to speak to the doc again.
Friday, March 12, 2010
Eventful day
I will try to post more often since I seem to have acquired a few followers.
I started oput the day yesterday with my trip to the psychiatrist. I bemoaned my lack of friendships, and he told me that I needed to tell people up front what I expected from a relationship. I always thought that friends did for each other without being tols or asked, but guess I was misinformed.
Went at lunch time to the NH, spent some time with Craig and then attended the care plan meeting. I asked for weekly updates from Hospice, and once again complained about the incidents where Craig seemed to be either having a seizure or in pain. Apparently nothing in the chart despite my repeated requests to have it checked out.
Down the hall to see Craig again, and after being with him few only a few minutes he starts to get aggitated, and begins the all too familiar epsiode. This time it is so intense, a nurse runs around the corner to see what the noise is, and I pull the nursing supervisor out of her office. he is shaking uncontrollably, arching his back, hyperventilalting, eyes are bulging out and grimacing. NOW he has everyones attention! they take his vitals, BP is at 72 over 60 and someone finds the PA for our doc in the next wing.
Now comes the really cute part: the NS asks about what medds and what schwedule he is on. The charge nurse tells her he is on Depakote 2x day at 8am and 8pm. I ask what the med was she gave on the way out of the lunch room. She says did not give him a med. I say then what was that you stopped me to give him. She says Magic cup. I say no the stuff n the med cup mixed with applesauce. She admits it was his Depakote.
When NS asks why he was getting at 1pm she says she was busy and had just gortten around to it!
So the doctor is now looking into changing meds.And now everyone knows what I have been compalining about for weeks. They can no longer think it is just my overactive imagination. I feel better that now they will do something about the pain he has been dealing with.
I know that he is not is such great shape, but there is never a reason to suffer because someone just won't listen.
Waiting to hear from Doc. Will let you know what happens .
I started oput the day yesterday with my trip to the psychiatrist. I bemoaned my lack of friendships, and he told me that I needed to tell people up front what I expected from a relationship. I always thought that friends did for each other without being tols or asked, but guess I was misinformed.
Went at lunch time to the NH, spent some time with Craig and then attended the care plan meeting. I asked for weekly updates from Hospice, and once again complained about the incidents where Craig seemed to be either having a seizure or in pain. Apparently nothing in the chart despite my repeated requests to have it checked out.
Down the hall to see Craig again, and after being with him few only a few minutes he starts to get aggitated, and begins the all too familiar epsiode. This time it is so intense, a nurse runs around the corner to see what the noise is, and I pull the nursing supervisor out of her office. he is shaking uncontrollably, arching his back, hyperventilalting, eyes are bulging out and grimacing. NOW he has everyones attention! they take his vitals, BP is at 72 over 60 and someone finds the PA for our doc in the next wing.
Now comes the really cute part: the NS asks about what medds and what schwedule he is on. The charge nurse tells her he is on Depakote 2x day at 8am and 8pm. I ask what the med was she gave on the way out of the lunch room. She says did not give him a med. I say then what was that you stopped me to give him. She says Magic cup. I say no the stuff n the med cup mixed with applesauce. She admits it was his Depakote.
When NS asks why he was getting at 1pm she says she was busy and had just gortten around to it!
So the doctor is now looking into changing meds.And now everyone knows what I have been compalining about for weeks. They can no longer think it is just my overactive imagination. I feel better that now they will do something about the pain he has been dealing with.
I know that he is not is such great shape, but there is never a reason to suffer because someone just won't listen.
Waiting to hear from Doc. Will let you know what happens .
Monday, March 8, 2010
The fight for me
No matter how hard I try, I just can't seem to get a break! Went to the doctor and had blood work and the yearly done.All seemed to be smoothing out.
Enter the suicide threats! Niece tries to hang herself, several girls on the website threatening, spent days trying to talk to them , only to have them tell the others that I was being mean to them! Telling them they needed to call 911 or check themselves into a mental health clinic is being mean? Been there , done that!
Still no communication from my brother in law, Craig having more seizures, 5 days of plugged up toilet... too much at once!
Called and applied for Short term disability and FMLA. Just want to get my shit together and get some help.
Doc calls and asks about STD papers, go to office to talk to her, have a total meltdown.Try to explain that I'm so out of it, don't clean, don't balance checkbook, don't leave the house.Even doctor is hugging me trying to calm me down.
Get text from boss asking when I'm coming back to work at 11 pm. Told her I emailed, and she should check with HR.Woke up by phone the next morning, panic attack! The phone never rings unless somethings wrong with Craig. Answering machine comes on , yelling into phone to hold on, twist ankle getting to answering machine, only to find out it is STD people asking "If your husband has been sick all this time, why are you depressed now?"
When was the last time you had to watch you husband die slowly? When was the last time you cried until you threw up? When was the last time you had to deal with a sister out of her mind because we had to kick in her daughter's door and cut her down? When was the last time you felt like you had no one to hug you, or talk to you, have dinner with?When was the last time you had to try to balance a 45 dollar 2 week paycheck against
taking care of your husband? When was the last time you shopped for baby food to try to get your husband to eat after 4 days with no food or drinking, only to have him gag trying to swallow and have a seizure?
I can feel myself swirling around that pit waitjng for the suction to pull me in! God I hope this psychiatrist call pull me out of this funk. Doubling the meds has helped some, but they are for the depression, what about the
stress? And how am I going to keep paying for these doctor visits and meds? What a catch 22...
Even the chatroom on the ALZ site is starting to depress me.So many self centered why me people. STFU and step up! It's ok to share, vent, ask for help, but don't sit there telling me what a wonderful person you are for putting up with Grandma/Mom/Dad/Grandpa.Then tell me in the next breath you are not going to get them treated for a serious health problem, or how you are planning your next vacation to Paris.
Guess I've vented enough for one day. If Craig wasn't in such bad shape, I'd chuck it all and move back to Ohio.At least someone there would call if they hadn't heard from me in 3 weeks...
Enter the suicide threats! Niece tries to hang herself, several girls on the website threatening, spent days trying to talk to them , only to have them tell the others that I was being mean to them! Telling them they needed to call 911 or check themselves into a mental health clinic is being mean? Been there , done that!
Still no communication from my brother in law, Craig having more seizures, 5 days of plugged up toilet... too much at once!
Called and applied for Short term disability and FMLA. Just want to get my shit together and get some help.
Doc calls and asks about STD papers, go to office to talk to her, have a total meltdown.Try to explain that I'm so out of it, don't clean, don't balance checkbook, don't leave the house.Even doctor is hugging me trying to calm me down.
Get text from boss asking when I'm coming back to work at 11 pm. Told her I emailed, and she should check with HR.Woke up by phone the next morning, panic attack! The phone never rings unless somethings wrong with Craig. Answering machine comes on , yelling into phone to hold on, twist ankle getting to answering machine, only to find out it is STD people asking "If your husband has been sick all this time, why are you depressed now?"
When was the last time you had to watch you husband die slowly? When was the last time you cried until you threw up? When was the last time you had to deal with a sister out of her mind because we had to kick in her daughter's door and cut her down? When was the last time you felt like you had no one to hug you, or talk to you, have dinner with?When was the last time you had to try to balance a 45 dollar 2 week paycheck against
taking care of your husband? When was the last time you shopped for baby food to try to get your husband to eat after 4 days with no food or drinking, only to have him gag trying to swallow and have a seizure?
I can feel myself swirling around that pit waitjng for the suction to pull me in! God I hope this psychiatrist call pull me out of this funk. Doubling the meds has helped some, but they are for the depression, what about the
stress? And how am I going to keep paying for these doctor visits and meds? What a catch 22...
Even the chatroom on the ALZ site is starting to depress me.So many self centered why me people. STFU and step up! It's ok to share, vent, ask for help, but don't sit there telling me what a wonderful person you are for putting up with Grandma/Mom/Dad/Grandpa.Then tell me in the next breath you are not going to get them treated for a serious health problem, or how you are planning your next vacation to Paris.
Guess I've vented enough for one day. If Craig wasn't in such bad shape, I'd chuck it all and move back to Ohio.At least someone there would call if they hadn't heard from me in 3 weeks...
Tuesday, February 23, 2010
Just have to vent
Wow! What a long time it has taken me to get back to this!
Aside from the obvious deterioration on hubby's part, I am now dealing with the toll it has taken on me. Between the stress of work, Craig, home and family, I am at the breaking point. I no longer keep my house or my self in any kind of presentable shape. I can't go to sleep, have panic attacks, cry all the time and can't breathe half the time. Sometimes it feels like a boa constrictor is squeezing the air out of me. I have no attention span, and find myself floating off when driving. Scares the crap right out of you! I, the spelling and language queen, find myself fighting for common words. Sometimes I'm afraid I'm getting it too. Wouldn't that be ironic? Who would fight for me the way I've fought for him?
Craig's mother passed away a few weeks ago, and his brother, who waited until the last days to tell us, curtly informed me of her passing, but has made no contact since, despite repeated attempts on my part. Guess we are no longer part of his life. Whatever.
Speaking of which, after a few Web searches, I found out that the story he told about stopping on the way to Arlington for his Uncle's funeral was bullshit. The man was buried in Erie.
Craig is back to the depakote along with a small dose of zyprexa now, is still seizing, having trouble swallowing and now breathing is difficult. I have told them several times he is in pain of some kind, but nothing has been done to try to figure out what the cause is. I will have to address this with the Hospice I guess.
Funeral plans have been completed, again, all alone.Everything is done all alone now days. Even the few people who used to keep in contact have drifted away.
Thank God for the people on the Alzheimers websites. They are the only support I have now.
I miss my life, I miss my sanity, but most of all I miss Craig. He is already gone....
Aside from the obvious deterioration on hubby's part, I am now dealing with the toll it has taken on me. Between the stress of work, Craig, home and family, I am at the breaking point. I no longer keep my house or my self in any kind of presentable shape. I can't go to sleep, have panic attacks, cry all the time and can't breathe half the time. Sometimes it feels like a boa constrictor is squeezing the air out of me. I have no attention span, and find myself floating off when driving. Scares the crap right out of you! I, the spelling and language queen, find myself fighting for common words. Sometimes I'm afraid I'm getting it too. Wouldn't that be ironic? Who would fight for me the way I've fought for him?
Craig's mother passed away a few weeks ago, and his brother, who waited until the last days to tell us, curtly informed me of her passing, but has made no contact since, despite repeated attempts on my part. Guess we are no longer part of his life. Whatever.
Speaking of which, after a few Web searches, I found out that the story he told about stopping on the way to Arlington for his Uncle's funeral was bullshit. The man was buried in Erie.
Craig is back to the depakote along with a small dose of zyprexa now, is still seizing, having trouble swallowing and now breathing is difficult. I have told them several times he is in pain of some kind, but nothing has been done to try to figure out what the cause is. I will have to address this with the Hospice I guess.
Funeral plans have been completed, again, all alone.Everything is done all alone now days. Even the few people who used to keep in contact have drifted away.
Thank God for the people on the Alzheimers websites. They are the only support I have now.
I miss my life, I miss my sanity, but most of all I miss Craig. He is already gone....
Monday, November 2, 2009
Tornadoes have nothing on this
I know it has been a while since I last posted, but life has been one thing after the other lately.
Craig's seizures have gotten worse, and he spent 5 days in the hospital, 2 of which were in a coma.Then fine then unable to swallow, then catatonic.
Finally got him released, and he has deteriorated to the point of looking into hospice, and telling the staff no to a feeding tube.
He cannot chew, and is on a puree diet, cannot drink thru a straw,does not move or speak.
They have adjusted his meds so many times in the past month, I can hardly keep up.
His visit to the neuro started the whirlwind when he removed all but his xyprexa and depakote.
The AD meds were restarted after his hospital trip, and his depakote was changed to time release, because his levels come up too low all the time.
It is so painful to see him in this condition, I can hardly stand to see him at all. I know he would be devastated by living in this shape, so the boys and I have agreed to no feeding tubes, no extra treatments.
Craig's seizures have gotten worse, and he spent 5 days in the hospital, 2 of which were in a coma.Then fine then unable to swallow, then catatonic.
Finally got him released, and he has deteriorated to the point of looking into hospice, and telling the staff no to a feeding tube.
He cannot chew, and is on a puree diet, cannot drink thru a straw,does not move or speak.
They have adjusted his meds so many times in the past month, I can hardly keep up.
His visit to the neuro started the whirlwind when he removed all but his xyprexa and depakote.
The AD meds were restarted after his hospital trip, and his depakote was changed to time release, because his levels come up too low all the time.
It is so painful to see him in this condition, I can hardly stand to see him at all. I know he would be devastated by living in this shape, so the boys and I have agreed to no feeding tubes, no extra treatments.
Friday, October 9, 2009
one step forward 2 steps back
It has been a week since my last post, because I have been having one of those Murphy's law weeks.
I gave permission to give a Pnemonia vaccination to Craig last weel, and it seems to have undone all the progress he has made and then some. The first day after the shot, he could barely speak and shuffled, not recognizing me.
The next visit was worse, with him walking into walls, and trying to avoid me at all costs.
I spoke to the ombudsperson and told her ot to schedule a follow up.The first meeting yielded mixed results, and I haveno time for a second ineffectual meeting.
Then I called the prospective nursing home, only to be told that the admissions person was no longer there.
The woman I eventually spoke to was the person that initially evaluated Craig, and said she would check the status of the waiting list and get back to me. It is now 4 days later, and nothing.
I also tried to call in intermittent hours on my FMLA, only to be told it expired in September, but no one told me. Nor did they ask if I wanted to renew it.Now I will have to go thru the hassle again of trying to get a doctor to fill it out.
I placed a call to the SW at the nursing home, and left a message (in a meeting as usual) asking if she would contact Craig's docotor about filling the forms out ( he is associated with the nursing home).Twio days later and no call back. When I arrive at the nursing home, she is gone both afternoons long before office hours are done.
Also got a call from the attorney's office today, from an assistant, who didn't even know what I was going to the office for, but wanted to know if I wanted to schedule a follow up appt. Set it up for the same day as the Neuro appt for Craig. Might as well blow the whole day!
On top of that, Craig's disability check did not come on schedule, and I panicked. I received a call from the nursing home stating they had the check.Only on my arrival to pick up the check did I find out that they had applied and been designated his rep payee, without anyone notifying me. I told them I had applied to have the check direct deposited the day before, so we would have to wait and see what SS did with his future checks.
Anyone who thinks that placing their LO will ease the caretaking burden, needs to rethink.The challenges are different, but they are not easier.
I gave permission to give a Pnemonia vaccination to Craig last weel, and it seems to have undone all the progress he has made and then some. The first day after the shot, he could barely speak and shuffled, not recognizing me.
The next visit was worse, with him walking into walls, and trying to avoid me at all costs.
I spoke to the ombudsperson and told her ot to schedule a follow up.The first meeting yielded mixed results, and I haveno time for a second ineffectual meeting.
Then I called the prospective nursing home, only to be told that the admissions person was no longer there.
The woman I eventually spoke to was the person that initially evaluated Craig, and said she would check the status of the waiting list and get back to me. It is now 4 days later, and nothing.
I also tried to call in intermittent hours on my FMLA, only to be told it expired in September, but no one told me. Nor did they ask if I wanted to renew it.Now I will have to go thru the hassle again of trying to get a doctor to fill it out.
I placed a call to the SW at the nursing home, and left a message (in a meeting as usual) asking if she would contact Craig's docotor about filling the forms out ( he is associated with the nursing home).Twio days later and no call back. When I arrive at the nursing home, she is gone both afternoons long before office hours are done.
Also got a call from the attorney's office today, from an assistant, who didn't even know what I was going to the office for, but wanted to know if I wanted to schedule a follow up appt. Set it up for the same day as the Neuro appt for Craig. Might as well blow the whole day!
On top of that, Craig's disability check did not come on schedule, and I panicked. I received a call from the nursing home stating they had the check.Only on my arrival to pick up the check did I find out that they had applied and been designated his rep payee, without anyone notifying me. I told them I had applied to have the check direct deposited the day before, so we would have to wait and see what SS did with his future checks.
Anyone who thinks that placing their LO will ease the caretaking burden, needs to rethink.The challenges are different, but they are not easier.
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