Hello,
I just joined the group today and know a light hearted intro would surely be better. However I'm struggling to not lose
my mind and need an outlet away from family and friends.They know whats going on and are very loving and helpful but I
dont want them burdened with how close to the edge I'm teetering. So, I choose this board to express my feelings in hopes
that someone can say something that helps or at least I get relief from writing my current situation. It's long but to
really express myself I cant leave anything out...so...long story short does not apply.
I was dx with ms 10 years ago with a spinal tap and mri both positive for ms. I have done resonably well though and have
been fortuate to have only a few episodes a year that render me weak,confused,trembling,in pain and stumbling. I go into the
hospital for iv steroids and pain meds. It clears up in a few days to a few weeks each time. I do battle depression at
these times but otherwise do well. I have a large and very close family including a wonderful husband, many grown
childern, lots of grandkids, a teddy bear of a big brother and a very active healthy mother that I am the ring leader of.
That is to say, they look to me for advice, problem solving, planning events and well just about everything. I take on
the role gladly and get a since of accomplishment in being able to provide them with those things. They do not take it
for granted and always say" thanks for the best christmas ever" or " what would we do without you". When I'm having
an episode they step up and offer any possible help and comfort. Again I say I have been very lucky and thats the good
part of the story.
58 days ago things changed drastically. I have always felt I could handle anything with strength and determination but am
not so sure now. My strong, stubborn loving mother had been feeling bad for a few weeks but refused to go to the dr
till after the holidays because she only wanted to see her own dr. So, instead of arguing I said ok but make it soon.
She called wednesday for a thursday appointment that I said I would drive her to because of her feeling weak. I was
at her house that evening and said I'll pick you up tomorrow morning at 9. The next morning when I got there I knew
something was wrong the moment I walked in. She was sitting in the same spot that I had left her the night before.
I went over to her and said "momma why are'nt you dressed" she just looked at me and smiled. I never thought a smile
could be bad. It was horrible. Vacant and childlike. Then I smelled urine on her. I called 911. After a short time
and tests at a local hospital they came in and said they had arranged transport to a larger specialty hospital. They said
"I'm sorry but she has a massive brain tumor". The look of fear and saddness on my sweet mothers face when they said
that was the worst thing I had ever seen or had to deal with. I found out in the last 2 months that was not the worst.
During our 15 days in the larger hospital she was put in nuero icu while getting a dx and figuring out what to do.
It was malignant and to large for surgery. Her brain was swelling and even though there may be hope with radiation
and chemo, she cant be moved in her condition. I held her and tried to soothe her but she would just cry and cry
and say " where is Tina? I cant find my Tina" I would say, momma Its me...I'm right here. Again...I thought that was
worst...nope.
So, she improved enough to be moved to a regular room while finding the right oncologist and cancer
center. The nurse came in and helped me get her up to a bedside toilet. The nurse went out since I was with her.
Mother started to lean to the side so got in front of her to talk to her and help her straighten up. Then she started
shaking, spitting, making horrible growling like sounds and her face was distorted. I just held her and started yelling
" I need help!". They came running immediatly thank God. Three came in but yelled for more and rushed me into the hall.
My husband was sitting in the waiting room and heard the commotion and came running and saw me there crying and said
whats going on? I said I dont know but I think a siezure. Then I hear code blue..code blue..room 216. A million people
and equiptment come running. I just stood there crying, praying and trying to breath. After what felt like an hour
but was actually about 4 minutes a nurse ran out to me and said " we have a pulse". I thanked god for his mercy and then
thought OMG those minutes of waiting was the worst thing ever. nope
I hated having to call my sweet big bro Mark and tell him what happened. He loves her as much as me and had come to stay
with me in an extended stay hotel for support. Mark is a diabetic and suffured an injury helping my daughter with a shed
a year ago. The shed collapsed on him breaking his foot,ankle and leg so badly that multiple surgeries didnt work. It got
infected and resulted in him having his leg amputated. That too was not healing so I did daily cleansing and bandage
changes. He is self suffecient and drives etc.. but needs help with the bandage. We got thru this together. Many tears
but holding it together for mother. In addition to the health and emotional issues the hospital said medicare would
pay for radiation or a nursing center but not both( each are 5-10 thousand). They pretty much said..if she dosent get
radiation she will die and if you try to take care of her at home she will die so....Good luck with that
As soon as the dr.s were able to get the siezures under control and get radiation set up we moved mother to a nursing
facility in our home town. We cant take care of her at home because of the siezure risk(we live very rural,ambulance
takes 40 min to get there)and her other health needs. Fortunetly we know the owners,care takers( my daughter is a
nurse there) of the center and are comfortable with it. We had the oncologist set up and the cancer center. What I
hate is the treatments are everyday and the center is 45 minutes a day. I know it will be hard on her. The dr.s told
us that siezures are the risk and we have to keep her calm and relaxed as much as possible. So, I stayed with her every
day since that first day I found her. I go home at night and am trying to keep it as normal as possible for my 13 year
old grandson that I got custody of 3 months prior to all this. That was 48 days ago.
The first radiation treatment was set up for tuesday. We all talked about it and between me,my daughters and my brother
we would take turns riding with her. I still changed Marks bandages most days but with staying with mother and trying
to maintain a good home his daughter Carolyn started helping me with it on some days. I was getting worn out and
frankly didnt know how much longer I could hold up physically or mentally. Some days mother would be ok then the next
be crying and confused.
That saturday night I got a call from Carolyn saying she was worried because she was supposed to change Marks bandage
and told him she would be there at 6. I was already at home 35 minutes away. She said he dosent answer the door and
when she calls he dosent answer. I asked her where she was and she said out side his house and the door was locked.
She said she can here his phone ringing inside his apartment. I knew that was just not right. He always answers the
phone especially now with mother being so ill. I told her to call 911. I had spoken to my daughter(the nurse) moments
before and knew she was 2 blocks away so I called her and told her to go there NOW. Her and her husband beat the ambulance
there. I was on the phone with her and she said I'm going around back to his room to knock on his bedroom window. The next
thing she says is...OMG momma...I can see him. She was crying when she said it and I felt all the blood drain from my
body. I heard glass breaking and knew they had gotten in along with his daughter Carolyn and his son William who came
as well because he was worried. I kept saying is he alive...is he alive. I could tell she walked out of the chaos before
she spoke the next time. I'm sorry momma...I'm so sorry
My brother Mark passed away in his sleep from conjested heart failure 24 days ago. My heart is broken and my mind
shattered. His children are as broken as me and dont know what to do. They said aunt Tina they want to know where
to take him? My mind was blank. I have never been asked or even considered such a thing. So, the next few days were
spent figuring it out in a daze. Cemetary plot? services? phone calls? and then I actually had to face the worst thing
ever and that is telling my sweet mother that her only son had died.
Marks funeral was planned for wednesday. Mothers first radiation was scheduled for tuesday. We postponed till thursday.
I called her dr and got a sedative ready before I told her to ward of a siezure caused by stress. I planned the viewing,
funeral and burial but knew mother could not physically do the viewing or burial but had to go to the funeral. The nursing
staff was wonderful and helped me so much. They knew I was hurting and needed help. They sent 2 nurses with me to the
funeral and helped me unload the wheelchair. The funeral home let me wheel mother in alone before the funeral to see Mark
before the services. That was so hard. Mother can barely speak but can cry. Mostly she would just shake her head in
disbelief and cry. When they presented her with the folded flag she would just smoothe it with her hands then rub it on
cheek. The staff took her back after the services and allowed me to go to the burial and say my final goodbyes which
I appreciate so much. I came back to stay with her later and she didnt speak but would look at me with saddness and kept
grabbing my black skirt and shaking it. I know her well enough to know what she was thinking. I changed and dont wear
black around her.
Its been back and forth since. She has radiation daily. Her condition seems to be worsening but it could just be brain
swelling due to radiation. She begs to come home but is still not well enough. The high amount of steroids and other
meds in combination with brain swelling and tumor have left her angry, miserable and not a shadow of herself. It kills
me to see her this way and I cry all the way home.
Thru all of this I have held on by a thread but a week ago I had an episode and am struggling both physically and
emotionaly. They are doing a mri today to determine whether the radiation is working and we continue treatments to
try and live. If its not working the dr says its just torturing her and we should stop and bring her home to die. I am
at a loss. I usually handle episodes well and even while hurting can see a light at the end of the tunnel. I see no light.
I want to be alone and snap at family. I dont even want to hear them speak. I just want the facts so that I can try to
deal with whatever it is. Mothers bills are due...ok...just give them to me and go away. The funeral home wants its money
..ok...give them a portion and go away...etc.
So, in conclusion. I realize this is so long that few if any will read it. However writing it is maybe what I needed.
thank you for listening
Tina
I just joined the group today and know a light hearted intro would surely be better. However I'm struggling to not lose
my mind and need an outlet away from family and friends.They know whats going on and are very loving and helpful but I
dont want them burdened with how close to the edge I'm teetering. So, I choose this board to express my feelings in hopes
that someone can say something that helps or at least I get relief from writing my current situation. It's long but to
really express myself I cant leave anything out...so...long story short does not apply.
I was dx with ms 10 years ago with a spinal tap and mri both positive for ms. I have done resonably well though and have
been fortuate to have only a few episodes a year that render me weak,confused,trembling,in pain and stumbling. I go into the
hospital for iv steroids and pain meds. It clears up in a few days to a few weeks each time. I do battle depression at
these times but otherwise do well. I have a large and very close family including a wonderful husband, many grown
childern, lots of grandkids, a teddy bear of a big brother and a very active healthy mother that I am the ring leader of.
That is to say, they look to me for advice, problem solving, planning events and well just about everything. I take on
the role gladly and get a since of accomplishment in being able to provide them with those things. They do not take it
for granted and always say" thanks for the best christmas ever" or " what would we do without you". When I'm having
an episode they step up and offer any possible help and comfort. Again I say I have been very lucky and thats the good
part of the story.
58 days ago things changed drastically. I have always felt I could handle anything with strength and determination but am
not so sure now. My strong, stubborn loving mother had been feeling bad for a few weeks but refused to go to the dr
till after the holidays because she only wanted to see her own dr. So, instead of arguing I said ok but make it soon.
She called wednesday for a thursday appointment that I said I would drive her to because of her feeling weak. I was
at her house that evening and said I'll pick you up tomorrow morning at 9. The next morning when I got there I knew
something was wrong the moment I walked in. She was sitting in the same spot that I had left her the night before.
I went over to her and said "momma why are'nt you dressed" she just looked at me and smiled. I never thought a smile
could be bad. It was horrible. Vacant and childlike. Then I smelled urine on her. I called 911. After a short time
and tests at a local hospital they came in and said they had arranged transport to a larger specialty hospital. They said
"I'm sorry but she has a massive brain tumor". The look of fear and saddness on my sweet mothers face when they said
that was the worst thing I had ever seen or had to deal with. I found out in the last 2 months that was not the worst.
During our 15 days in the larger hospital she was put in nuero icu while getting a dx and figuring out what to do.
It was malignant and to large for surgery. Her brain was swelling and even though there may be hope with radiation
and chemo, she cant be moved in her condition. I held her and tried to soothe her but she would just cry and cry
and say " where is Tina? I cant find my Tina" I would say, momma Its me...I'm right here. Again...I thought that was
worst...nope.
So, she improved enough to be moved to a regular room while finding the right oncologist and cancer
center. The nurse came in and helped me get her up to a bedside toilet. The nurse went out since I was with her.
Mother started to lean to the side so got in front of her to talk to her and help her straighten up. Then she started
shaking, spitting, making horrible growling like sounds and her face was distorted. I just held her and started yelling
" I need help!". They came running immediatly thank God. Three came in but yelled for more and rushed me into the hall.
My husband was sitting in the waiting room and heard the commotion and came running and saw me there crying and said
whats going on? I said I dont know but I think a siezure. Then I hear code blue..code blue..room 216. A million people
and equiptment come running. I just stood there crying, praying and trying to breath. After what felt like an hour
but was actually about 4 minutes a nurse ran out to me and said " we have a pulse". I thanked god for his mercy and then
thought OMG those minutes of waiting was the worst thing ever. nope
I hated having to call my sweet big bro Mark and tell him what happened. He loves her as much as me and had come to stay
with me in an extended stay hotel for support. Mark is a diabetic and suffured an injury helping my daughter with a shed
a year ago. The shed collapsed on him breaking his foot,ankle and leg so badly that multiple surgeries didnt work. It got
infected and resulted in him having his leg amputated. That too was not healing so I did daily cleansing and bandage
changes. He is self suffecient and drives etc.. but needs help with the bandage. We got thru this together. Many tears
but holding it together for mother. In addition to the health and emotional issues the hospital said medicare would
pay for radiation or a nursing center but not both( each are 5-10 thousand). They pretty much said..if she dosent get
radiation she will die and if you try to take care of her at home she will die so....Good luck with that
As soon as the dr.s were able to get the siezures under control and get radiation set up we moved mother to a nursing
facility in our home town. We cant take care of her at home because of the siezure risk(we live very rural,ambulance
takes 40 min to get there)and her other health needs. Fortunetly we know the owners,care takers( my daughter is a
nurse there) of the center and are comfortable with it. We had the oncologist set up and the cancer center. What I
hate is the treatments are everyday and the center is 45 minutes a day. I know it will be hard on her. The dr.s told
us that siezures are the risk and we have to keep her calm and relaxed as much as possible. So, I stayed with her every
day since that first day I found her. I go home at night and am trying to keep it as normal as possible for my 13 year
old grandson that I got custody of 3 months prior to all this. That was 48 days ago.
The first radiation treatment was set up for tuesday. We all talked about it and between me,my daughters and my brother
we would take turns riding with her. I still changed Marks bandages most days but with staying with mother and trying
to maintain a good home his daughter Carolyn started helping me with it on some days. I was getting worn out and
frankly didnt know how much longer I could hold up physically or mentally. Some days mother would be ok then the next
be crying and confused.
That saturday night I got a call from Carolyn saying she was worried because she was supposed to change Marks bandage
and told him she would be there at 6. I was already at home 35 minutes away. She said he dosent answer the door and
when she calls he dosent answer. I asked her where she was and she said out side his house and the door was locked.
She said she can here his phone ringing inside his apartment. I knew that was just not right. He always answers the
phone especially now with mother being so ill. I told her to call 911. I had spoken to my daughter(the nurse) moments
before and knew she was 2 blocks away so I called her and told her to go there NOW. Her and her husband beat the ambulance
there. I was on the phone with her and she said I'm going around back to his room to knock on his bedroom window. The next
thing she says is...OMG momma...I can see him. She was crying when she said it and I felt all the blood drain from my
body. I heard glass breaking and knew they had gotten in along with his daughter Carolyn and his son William who came
as well because he was worried. I kept saying is he alive...is he alive. I could tell she walked out of the chaos before
she spoke the next time. I'm sorry momma...I'm so sorry
My brother Mark passed away in his sleep from conjested heart failure 24 days ago. My heart is broken and my mind
shattered. His children are as broken as me and dont know what to do. They said aunt Tina they want to know where
to take him? My mind was blank. I have never been asked or even considered such a thing. So, the next few days were
spent figuring it out in a daze. Cemetary plot? services? phone calls? and then I actually had to face the worst thing
ever and that is telling my sweet mother that her only son had died.
Marks funeral was planned for wednesday. Mothers first radiation was scheduled for tuesday. We postponed till thursday.
I called her dr and got a sedative ready before I told her to ward of a siezure caused by stress. I planned the viewing,
funeral and burial but knew mother could not physically do the viewing or burial but had to go to the funeral. The nursing
staff was wonderful and helped me so much. They knew I was hurting and needed help. They sent 2 nurses with me to the
funeral and helped me unload the wheelchair. The funeral home let me wheel mother in alone before the funeral to see Mark
before the services. That was so hard. Mother can barely speak but can cry. Mostly she would just shake her head in
disbelief and cry. When they presented her with the folded flag she would just smoothe it with her hands then rub it on
cheek. The staff took her back after the services and allowed me to go to the burial and say my final goodbyes which
I appreciate so much. I came back to stay with her later and she didnt speak but would look at me with saddness and kept
grabbing my black skirt and shaking it. I know her well enough to know what she was thinking. I changed and dont wear
black around her.
Its been back and forth since. She has radiation daily. Her condition seems to be worsening but it could just be brain
swelling due to radiation. She begs to come home but is still not well enough. The high amount of steroids and other
meds in combination with brain swelling and tumor have left her angry, miserable and not a shadow of herself. It kills
me to see her this way and I cry all the way home.
Thru all of this I have held on by a thread but a week ago I had an episode and am struggling both physically and
emotionaly. They are doing a mri today to determine whether the radiation is working and we continue treatments to
try and live. If its not working the dr says its just torturing her and we should stop and bring her home to die. I am
at a loss. I usually handle episodes well and even while hurting can see a light at the end of the tunnel. I see no light.
I want to be alone and snap at family. I dont even want to hear them speak. I just want the facts so that I can try to
deal with whatever it is. Mothers bills are due...ok...just give them to me and go away. The funeral home wants its money
..ok...give them a portion and go away...etc.
So, in conclusion. I realize this is so long that few if any will read it. However writing it is maybe what I needed.
thank you for listening
Tina
. Next I would like to welcome you to MS world! I would also lean towards the grief counseling very heavily ( it helps so much, trust me).
, i know, easy to say, almost impossible to do.
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