Just lost my mother 7/11/2012

[CynMarie77]

My mother just passed away on July 11, 2012. I don't know what to say to describe what she had that ended up taking her from us, but I'll try.

One Sunday morning my mom calls me that I need to come get her to take her to the hospital. When i get there she's holding herself up on the counter, barely able to stand. I sit her on the couch and she starts telling me things that make no sense, and hallucinating. I take her blood sugar (she was pre-diabetic) and it's normal. I call 911.

We get to the hospital and the pulse ox monitor keeps going off. Nurses keep thinking its the machine, but after changing it out they determine that her oxygen sat is really that low - 70%. They start her on oxygen. After blood work they find her hemaglobin is 6 (should be 12-14 in an adult female). They give her a blood transfusion. However, this does not fix the problem and she is eventually intubated to help her breathe.

Many doctors are called in, including a GI doctor and a neurologist. After many tests, they determine she has a muscle disorder called polymyositis, in addition to primary biliary cirrhosis. They start her on steroids to help her lungs get stronger and other stuff to help her liver. However it's a slow process, so eventually they have to put in a trache tube. She was in the ICU for 3 weeks, then moved to a LTAC respiratory unit for another 5 weeks where they were able to successfully wean her off the ventilator.

She was discharged in October 2009 and went home where she lived on her own (successfully) until recently.

After that our entire family became very cautious, making sure that she stayed healthy and any thing that came up we took her to the doctor or the ER just to be safe. Since her stay in the hospital and as a result of her disease, she had lost a lot of weight and had developed kyphosis (a hunch in her back). She also was very weak (although was still on steroids for her lungs). Regardless of all that, she still lived very well for 2 years.

Then in February of this year (2012) she started complaining of being very tired all the time. Her birthday was 3/2 and we just thought she was doing too much (shopping, etc with friends). But early Monday morning 3/12 i get a phone call - deja vu. I rush over there. She says she feels very confused. I take her to the hospital where, while in the ER, she declines before my eyes. Over the course of about 6 hours she falls into a coma (later I was told it's encephalopathy). She had a build up of ammonia in her system from her liver not processing proteins properly. They admitted her for observation while treating her with lactilose (spelling?). I was assured she would be ok in about 48 hours, but would have to take that for the rest of her life as well as be on a very restricted diet to keep this from happening again. Ok, we can do that.

Wednesday 3/14 I get to the hospital to find she is surrounded by nurses and doctors. She had stopped breathing. They intubated her, advised she may have aspirated some food (from the tray that was placed in front of her - with no help to feed herself and no one watching her). She was admitted to the ICU.

Once in the ICU, she just went downhill from there. She had a feeding tube, and was intubated. Her liver kept causing a build up of fluid on her abdomen which was pushing up on her diaphragm which in turn kept her from being able to breathe normally, therefore weaning off the vent was an issue. She developed ventilator assisted pneumonia, was treated, etc....but then got another infection, treated, etc.....every time we turned around it was something else. Her platelets kept dropping, blood count kept dropping, multiple transfusions....on and on. Eventually they put another trache in because she couldn't get weaned off the ventilator and couldn't stay intubated because of breakdown in her mouth. After 2 months in the ICU, she was finally stable and they moved her to a the LTAC respiratory unit (same one from 2009).

Many of the same RT's were there and they remembered her from 2009. However this time was much different. They tried just as hard to wean her, but the most they could get her to do was 2 hours off the vent, 3x/day...and even that was a struggle for her. She continued to develop infection, and after having the feeding tube in for so long her nose was starting to break down so they put in a peg tube. More transfusions, more fluid drawn off her belly. After a month they determined there wasn't much else they could do, and discharged her to a skilled nursing facility an hour away.

She was in the SNF for 3 days. On the 3rd day her blood sugar kept dropping and they couldn't get it to stabilize. They had her taken to the ER at a local hospital where she slipped into a coma. They got her blood sugar stabilized and moved her to the ICU where she stayed for a week. Then she was moved to another LTAC facility where she spent her last month.

They said it was a meningeal infection. Not meningitis, but like it.....a fungal infection. They treated it, but also found that she had had a small stroke at some point, but that it wasn't severe enough to cause the coma. After treating the fungal infection, she still didn't wake up. She passed away at 8:50 am on 7/11 - almost 4months to the day from when she was first admitted.

I am an only child and she and my father had been divorced since i was 11. I am now 34 years old. She raised me, and even though my father lives in the same state, i stayed closer to her, and we were best friends. I could tell her ANYTHING...i called her 5-6x a day. She was my rock.

When she first went into the hospital in 2009, i was in the 2nd to last semester of school - studying to be a medical lab tech. 2 weeks after being admitted, her employer of 37 years terminated her. I almost dropped out of school but she told me not to, we'd be ok. Unfortunately I was unable to find a job after I graduated and she was not able to go back to work, so for 2 years our finances suffered. I only just got a job in my field 3 weeks ago.

I'm devastated. Emotionally, financially. I have family - her 2 sisters and my cousins and grandparents, and my dad.....but i still feel SO alone. I can't get my head or my heart to grasp what has happened. I can't sleep...i have to take something every night to go to sleep. I try to stay busy, play on the computer, watch tv...but the very second that im not doing something I start crying.

I don't know what to expect to get from this support site. I don't know what to do at all.

[BreathofAngel]

My Dearest (((((((CynMarie))))))), As I read your posting I instinctively started praying for you. I know how very difficult this is for you at this time and I want to let you know that I also understand that right now it is hard to think of too many things that you would normally think about. It is a time of numbness for most people and again I completely understand this from my own experience. Even though you have other family members you naturally miss your dear Mother very much and rightfully so. I want for you to know that you have been very courageous, dearheart, for all that you have been through and for the way you have handled it. And I want to send you a special (((HUG))) for that.

Your dear Mother suffered much with all that you have relayed to us about her illnesses and I am very sorry that it had to happen that way. We may never completely know why life brings such suffering to some but it is said that those who suffer the most in life are especially crowned by God when they return to Him in spirit. There can be absolutely no doubt that your dear Mother is just such a Very Special Person whom God has received into His kingdom and is offering her all the Love and Comfort that she is truly so deserving of.

I wish there were other words to say to you but please know that your love for her and hers for you will continue throughout eternity as she will never cease to be your beloved Mother anymore than you being her one and only beloved daughter. Please know that you are in my special prayers as is your dear Mother. You are loved very much for the special person that you truly are even though some may not be so vocal about it. But God's love is incomparable to anyone else's and He lives within your heart and will always be there to bring you peace and His loving comfort.

May the LORD bless and keep you safe and with peace and much love always surrounding you.

[val]

My mother just passed away on July 11, 2012. I don't know what to say to describe what she had that ended up taking her from us, but I'll try.

One Sunday morning my mom calls me that I need to come get her to take her to the hospital. When i get there she's holding herself up on the counter, barely able to stand. I sit her on the couch and she starts telling me things that make no sense, and hallucinating. I take her blood sugar (she was pre-diabetic) and it's normal. I call 911.

We get to the hospital and the pulse ox monitor keeps going off. Nurses keep thinking its the machine, but after changing it out they determine that her oxygen sat is really that low - 70%. They start her on oxygen. After blood work they find her hemaglobin is 6 (should be 12-14 in an adult female). They give her a blood transfusion. However, this does not fix the problem and she is eventually intubated to help her breathe.

Many doctors are called in, including a GI doctor and a neurologist. After many tests, they determine she has a muscle disorder called polymyositis, in addition to primary biliary cirrhosis. They start her on steroids to help her lungs get stronger and other stuff to help her liver. However it's a slow process, so eventually they have to put in a trache tube. She was in the ICU for 3 weeks, then moved to a LTAC respiratory unit for another 5 weeks where they were able to successfully wean her off the ventilator.

She was discharged in October 2009 and went home where she lived on her own (successfully) until recently.

After that our entire family became very cautious, making sure that she stayed healthy and any thing that came up we took her to the doctor or the ER just to be safe. Since her stay in the hospital and as a result of her disease, she had lost a lot of weight and had developed kyphosis (a hunch in her back). She also was very weak (although was still on steroids for her lungs). Regardless of all that, she still lived very well for 2 years.

Then in February of this year (2012) she started complaining of being very tired all the time. Her birthday was 3/2 and we just thought she was doing too much (shopping, etc with friends). But early Monday morning 3/12 i get a phone call - deja vu. I rush over there. She says she feels very confused. I take her to the hospital where, while in the ER, she declines before my eyes. Over the course of about 6 hours she falls into a coma (later I was told it's encephalopathy). She had a build up of ammonia in her system from her liver not processing proteins properly. They admitted her for observation while treating her with lactilose (spelling?). I was assured she would be ok in about 48 hours, but would have to take that for the rest of her life as well as be on a very restricted diet to keep this from happening again. Ok, we can do that.

Wednesday 3/14 I get to the hospital to find she is surrounded by nurses and doctors. She had stopped breathing. They intubated her, advised she may have aspirated some food (from the tray that was placed in front of her - with no help to feed herself and no one watching her). She was admitted to the ICU.

Once in the ICU, she just went downhill from there. She had a feeding tube, and was intubated. Her liver kept causing a build up of fluid on her abdomen which was pushing up on her diaphragm which in turn kept her from being able to breathe normally, therefore weaning off the vent was an issue. She developed ventilator assisted pneumonia, was treated, etc....but then got another infection, treated, etc.....every time we turned around it was something else. Her platelets kept dropping, blood count kept dropping, multiple transfusions....on and on. Eventually they put another trache in because she couldn't get weaned off the ventilator and couldn't stay intubated because of breakdown in her mouth. After 2 months in the ICU, she was finally stable and they moved her to a the LTAC respiratory unit (same one from 2009).

Many of the same RT's were there and they remembered her from 2009. However this time was much different. They tried just as hard to wean her, but the most they could get her to do was 2 hours off the vent, 3x/day...and even that was a struggle for her. She continued to develop infection, and after having the feeding tube in for so long her nose was starting to break down so they put in a peg tube. More transfusions, more fluid drawn off her belly. After a month they determined there wasn't much else they could do, and discharged her to a skilled nursing facility an hour away.

She was in the SNF for 3 days. On the 3rd day her blood sugar kept dropping and they couldn't get it to stabilize. They had her taken to the ER at a local hospital where she slipped into a coma. They got her blood sugar stabilized and moved her to the ICU where she stayed for a week. Then she was moved to another LTAC facility where she spent her last month.

They said it was a meningeal infection. Not meningitis, but like it.....a fungal infection. They treated it, but also found that she had had a small stroke at some point, but that it wasn't severe enough to cause the coma. After treating the fungal infection, she still didn't wake up. She passed away at 8:50 am on 7/11 - almost 4months to the day from when she was first admitted.

I am an only child and she and my father had been divorced since i was 11. I am now 34 years old. She raised me, and even though my father lives in the same state, i stayed closer to her, and we were best friends. I could tell her ANYTHING...i called her 5-6x a day. She was my rock.

When she first went into the hospital in 2009, i was in the 2nd to last semester of school - studying to be a medical lab tech. 2 weeks after being admitted, her employer of 37 years terminated her. I almost dropped out of school but she told me not to, we'd be ok. Unfortunately I was unable to find a job after I graduated and she was not able to go back to work, so for 2 years our finances suffered. I only just got a job in my field 3 weeks ago.

I'm devastated. Emotionally, financially. I have family - her 2 sisters and my cousins and grandparents, and my dad.....but i still feel SO alone. I can't get my head or my heart to grasp what has happened. I can't sleep...i have to take something every night to go to sleep. I try to stay busy, play on the computer, watch tv...but the very second that im not doing something I start crying.

I don't know what to expect to get from this support site. I don't know what to do at all.

[Lost.Lady]

My mother went into the hospital on my birthday June 16th and died on Canada day, July the 1st....She had had a stroke last year which left her left side a little problematic and was ok for a while but then started declining....she sat with her eyes closed most or all the time even when I had to feed her at the end...she went into the hospital because her legs gave in and it turned out to be that she ahd broken her femur on right leg... by the way, she was 90 yrs old and they said they could do nothing for her as she seemed be letting her self go, had little or no reaction, nor was showing any signs of rehalibitation or however you spell this word...I lived with her most or all my life , have no husband and no children, and like you , am the only child.....I cried for 4 months before her death and am still crying now, but less, have a small depression, anxiety and panic attacks...also do not sleep and have to take Ativan and some other kind of pill with a funny name...This other funny named pill makes me dizzy when I get up to go to the bathroom my head spins and there is a staircase on my right and bathroom on the left...I think I am going to stop that pill (before my deceased mother decides to come and get me) ( a little dark joke ) I meant if I lose balance and fall down those stairs....Doctors just give you any meds they think are good for you...but I am not willing to flip down a staircase because of the pill just yet...(another small dark joke) and actually a general doctor should actually send someone with mental problems to see a psychologist if you have the money to pay for one...or a psychiatrist, if you are not sleeping very well.or having panic attacks before falling asleep....i already had a major depression in 2000 because of the loss of energy from looking for a job in this rotten city where I live and where the best jobs are on the outskirts and I do not own a car and town bus , well the stupid bus just goes to the most common visited places where we shop . ...so how stupid and depressing that was for me....Anyways back to the story, I was ok mentally until the passing of my mother , the depression and anxiety are back, ....I have hardly no energy , mood swings all the time, crying fits, loss of appetite and whatever else you might like to throw in .....General doctor diagnosed me with pathological grief which he said can last up to six months or more because I was too close to my mother and these are the results.....also i did not tell him that I now have monetary problems and will not be able to work because of these feelings inside of me....so I really am making the story sound negative ...but you have to look at it the good way by telling yourself that our mothers are now in a good place and are not suffering anymore ....I pray to God every night before falling asleep...(this seems to help me fall asleep) I make prayer for her and ask him to take care of her because she belongs in heaven , as was and is angel now looking over us ...actually I feel more peace when I talk to God and tell him what I feel and I feel serenity and calm inside me and then I fall asleep ...to get up to another day that I do not want to get out of bed, so i force myself out and then I do things, anything , just doing anything keeps our minds off our suffering, housecleaning, walking the dog, or just plain walking. going to the park, etc and etc....it helps....