Diane Tyler's Mom GA
Member Since 2018
Hi all I never have posted an update about Tyler. He's still in remission since 1-24-21 knock on wood. Eats like a pig and still wakes me up around 2 or 3 AM to eat.
He would never use a feeder , he's afraid of his own shadow
Since losing his brother Perry last Oct ( my love) Tyler has become a little more affectionate.
A new thing he's been doing for about 6 months now is to go into the kitchen and meows until I go in there and pick him up and put him over my shoulder.
He then will turn and kiss my nose but then bite it!
He's a weirdo. It's only in the kitchen that he wants to be picked up
He'll even do this around 2 AM. He won't shut up unless I go in there
Gotta break him of this habit
In case anyone has noticed I haven't been posting in the last week or so is because my daughter hasn't been doing well at all.
Some of you might know she has Complex Regional Pain Syndrome for 18 years now
She's now 37
There is no cure, not enough awareness or research
It's actually known as The Suicide Disease
She even has to wear a winter coat in the summer with the hood on because just the breeze sets off the nerves in her ears, plus other symptoms other people dont have I belong to many support groups and you would not believe how many moms, dads, teens, people!e in their 20's and 30's who have taken their lives because they just couldn't take the pain anymore
Pain meds just shave a little of the pain off, they really don't help because it's a different pain pathway with this disease
Ashley has been in a very bad flair right now , nothing is helping
In case anyone wants to read about this disease
https://princessinthetower.org/complex-regional-pan-syndrome-crpsrsd/
It's the most painful disease in medical history
Right now from her neck up, eyes, jaw, teeth, face , temples and ears are killing her
All the nerves are going crazy
I'm sitting here and so angry she has to go through this
Can't leave the house because of all the noise outside sets off the pain
You can't escape noise
Only leaves the house for blood work
When people cut grass , leaf blowers , snow blower we have to leave the house because the noise just kills her
No way to live, and nothing to look forward to
All she has been saying to me Is why am I still here , why am I still hanging on
Makes me sick to my stomach that my daughter has to go through this
Now besides this my dad has Alzheimer's, he's 88
Has been in a nursing home since last Oct
He used to live with me years ago then moved in with my sister
He wasn't bad then just started to forget things
Then one day my sister calls me and said he was really acting strange, like slower and a little confused.
We took him to the ER and found out he had a mini stroke, most likely during the night
His face looked fine , no drooping, nothing
He stayed there for a few days and then we had to put him in the nursing home, I forgot to say before the stroke he started to pee on the floor, my sister and her husband just couldn't take care if him anymore, if one of us could we would have.
It breaks our hearts that we had to put him there
We found a very good one, clean, the nurses are great and the aids all love him
He was such a tough Italian from Newark, N,J. and to see him like this just kills us
Anyway we get a call Saturday morning that passed that he fell and they were taking him to the hospital
He has a fractured hip
What happened was he fell at 3AM
He wanders around a lot , uses his walker but most of the time forgets it
So the night nurse see's him coming down the hall without it and runs to get a wheelchair by the time she got back he's gone , she finds him on the floor in someone else's room on the floor
Why would you not just go up to him and grab him and take him back to his room!
She said he runs when he sees her walking towards him
Run he can't even walk that fast!
We even bought a baby monitor months ago so they can watch him at the nurses station
This is the 4th time he has fallen
The day crew is wonderful, it's the midnight shift that sucks
No one was at the nurses station when this happened, if someone was they would have seen him coming out of the room
I don't expect them to look the monitor 24/7 but ciome on
At 3 AM they aren't that busy, all of the residents are sleeping, no meds are being handed out
There were 2 nurses and 2 CNA"s on duty that night and he falls and walks into someone
else's room
They were probably in the lounge bull sh**ting
So we went and had a meeting with the administrator about why happened and told her when he returns there better be something done because if he calls again there is going to be big trouble
A lot more was said but don't want to get thrown off of here
He's returned to the nursing home on Wed, in a lot of pain, can't walk and was more confused .
He still knows who me, my sister and brother are, it's just that he tells us stories that really never happene so we just go along with him
He never forgets about Ashley, she has only been able to see him once and that was only because we took him out of the home for the day.
She talks to him almost everyday, he's been a father to her. My husband died in 2008
She is just sick over what has happened to her Pop, that's what she calls him
So right now they have someone sitting with my dad 24/7
PT will start tomorrow I think. He can sit up on the side of the bed so far
He still wants to try and escape lol that's my dad for you
Me and my sister went up on Wed and she went today to see him
She said he's more with it today mind wise, not eating that much yet
They are giving him Tramadol for pain so he's probably a little loopy
I said to my sister what happens when they feel he doesn't need a one in one to sit with him
What do we do wait until he falls again
We will talk to the administrator , social worker, head of nursing when the time comes
They will access him weekly
So between Ashley and my dad I have been busy and angry about everything
When it comes to my dad and the nursing home you do not want to screw with me and my sister.
This was neglect that he fell
We have inside contacts in the nursing home that tells us what goes on
I just pray he doesn't go downhill because of this fall
I'll most likely go up there on Sunday
Don't get me wrong the nurses and aids are great with him, they all love him,it's the midnight crew that stinks, but we took care of that!
If I have to drive up there at 3AM to see what's going on I will
Don't mess with me or my sister because you won't win lol
I just can't believe he wound up with Alzheimer's
So I just wanted to pop in just in case anyone wondered where I have been
I still have been checking in on everyone's kitties.
My heart is just breaking for my daughter!
She never got the chance to live her life at all!
We have tried everything they have to offer for this dam disease but nothing helped
This is no way to live, I don't know how she puts up with the pain, I hear her sobbing at times and feel so helpless, I can just put my hand through a window that's how angry I get
Sorry for such a long post, it was supposed to be about Tyler I know lol
Sorry Tyler
I hope everyone has a nice Easter
♥
He would never use a feeder , he's afraid of his own shadow
Since losing his brother Perry last Oct ( my love) Tyler has become a little more affectionate.
A new thing he's been doing for about 6 months now is to go into the kitchen and meows until I go in there and pick him up and put him over my shoulder.
He then will turn and kiss my nose but then bite it!
He's a weirdo. It's only in the kitchen that he wants to be picked up
He'll even do this around 2 AM. He won't shut up unless I go in there
Gotta break him of this habit
In case anyone has noticed I haven't been posting in the last week or so is because my daughter hasn't been doing well at all.
Some of you might know she has Complex Regional Pain Syndrome for 18 years now
She's now 37
There is no cure, not enough awareness or research
It's actually known as The Suicide Disease
She even has to wear a winter coat in the summer with the hood on because just the breeze sets off the nerves in her ears, plus other symptoms other people dont have I belong to many support groups and you would not believe how many moms, dads, teens, people!e in their 20's and 30's who have taken their lives because they just couldn't take the pain anymore
Pain meds just shave a little of the pain off, they really don't help because it's a different pain pathway with this disease
Ashley has been in a very bad flair right now , nothing is helping
In case anyone wants to read about this disease
https://princessinthetower.org/complex-regional-pan-syndrome-crpsrsd/
It's the most painful disease in medical history
Right now from her neck up, eyes, jaw, teeth, face , temples and ears are killing her
All the nerves are going crazy
I'm sitting here and so angry she has to go through this
Can't leave the house because of all the noise outside sets off the pain
You can't escape noise
Only leaves the house for blood work
When people cut grass , leaf blowers , snow blower we have to leave the house because the noise just kills her
No way to live, and nothing to look forward to
All she has been saying to me Is why am I still here , why am I still hanging on
Makes me sick to my stomach that my daughter has to go through this
Now besides this my dad has Alzheimer's, he's 88
Has been in a nursing home since last Oct
He used to live with me years ago then moved in with my sister
He wasn't bad then just started to forget things
Then one day my sister calls me and said he was really acting strange, like slower and a little confused.
We took him to the ER and found out he had a mini stroke, most likely during the night
His face looked fine , no drooping, nothing
He stayed there for a few days and then we had to put him in the nursing home, I forgot to say before the stroke he started to pee on the floor, my sister and her husband just couldn't take care if him anymore, if one of us could we would have.
It breaks our hearts that we had to put him there
We found a very good one, clean, the nurses are great and the aids all love him
He was such a tough Italian from Newark, N,J. and to see him like this just kills us
Anyway we get a call Saturday morning that passed that he fell and they were taking him to the hospital
He has a fractured hip
What happened was he fell at 3AM
He wanders around a lot , uses his walker but most of the time forgets it
So the night nurse see's him coming down the hall without it and runs to get a wheelchair by the time she got back he's gone , she finds him on the floor in someone else's room on the floor
Why would you not just go up to him and grab him and take him back to his room!
She said he runs when he sees her walking towards him
Run he can't even walk that fast!
We even bought a baby monitor months ago so they can watch him at the nurses station
This is the 4th time he has fallen
The day crew is wonderful, it's the midnight shift that sucks
No one was at the nurses station when this happened, if someone was they would have seen him coming out of the room
I don't expect them to look the monitor 24/7 but ciome on
At 3 AM they aren't that busy, all of the residents are sleeping, no meds are being handed out
There were 2 nurses and 2 CNA"s on duty that night and he falls and walks into someone
else's room
They were probably in the lounge bull sh**ting
So we went and had a meeting with the administrator about why happened and told her when he returns there better be something done because if he calls again there is going to be big trouble
A lot more was said but don't want to get thrown off of here
He's returned to the nursing home on Wed, in a lot of pain, can't walk and was more confused .
He still knows who me, my sister and brother are, it's just that he tells us stories that really never happene so we just go along with him
He never forgets about Ashley, she has only been able to see him once and that was only because we took him out of the home for the day.
She talks to him almost everyday, he's been a father to her. My husband died in 2008
She is just sick over what has happened to her Pop, that's what she calls him
So right now they have someone sitting with my dad 24/7
PT will start tomorrow I think. He can sit up on the side of the bed so far
He still wants to try and escape lol that's my dad for you
Me and my sister went up on Wed and she went today to see him
She said he's more with it today mind wise, not eating that much yet
They are giving him Tramadol for pain so he's probably a little loopy
I said to my sister what happens when they feel he doesn't need a one in one to sit with him
What do we do wait until he falls again
We will talk to the administrator , social worker, head of nursing when the time comes
They will access him weekly
So between Ashley and my dad I have been busy and angry about everything
When it comes to my dad and the nursing home you do not want to screw with me and my sister.
This was neglect that he fell
We have inside contacts in the nursing home that tells us what goes on
I just pray he doesn't go downhill because of this fall
I'll most likely go up there on Sunday
Don't get me wrong the nurses and aids are great with him, they all love him,it's the midnight crew that stinks, but we took care of that!
If I have to drive up there at 3AM to see what's going on I will
Don't mess with me or my sister because you won't win lol
I just can't believe he wound up with Alzheimer's
So I just wanted to pop in just in case anyone wondered where I have been
I still have been checking in on everyone's kitties.
My heart is just breaking for my daughter!
She never got the chance to live her life at all!
We have tried everything they have to offer for this dam disease but nothing helped
This is no way to live, I don't know how she puts up with the pain, I hear her sobbing at times and feel so helpless, I can just put my hand through a window that's how angry I get
Sorry for such a long post, it was supposed to be about Tyler I know lol
Sorry Tyler
I hope everyone has a nice Easter
♥
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