My mom has just passed away

[luckystar112]

I think I''m probably the one with the inappropriate comments. I''m a dummy sometimes, and don''t really know what to say in situations like this. But I am very sorry for your loss...and I''m extra sorry for not taking into consideration if what I wrote could make you feel worse. (It probably did. I''m awful.

) I think I was just a little shocked, but it was definitely not the place to express that shock. So once again, I apologize, and I hope that very soon you are able to find acceptance.

 

[Phoenix]

Date: 8/1/2007 12:02:26 PM
Author: luckystar112
I think I'm probably the one with the inappropriate comments. I'm a dummy sometimes, and don't really know what to say in situations like this. But I am very sorry for your loss...and I'm extra sorry for not taking into consideration if what I wrote could make you feel worse. (It probably did. I'm awful.

) I think I was just a little shocked, but it was definitely not the place to express that shock. So once again, I apologize, and I hope that very soon you are able to find acceptance.

Not at all, LuckyStar. Your comments were not inappropirate. I appreciate your words and condolences. You're a good person and I appreciate "knowing" you.

 

[Phoenix]

Thank you, everyone too, for yr kind thoughts and words as well as support.

You know, one never knows how much one is pained by the loss of a loved one until it actually happens. I guess I thought I was kind of prepared for the loss of my parents since I have older parents, but I really was not. Not a day passes that I don't think of my mum. I spoke to DH again today and he explained to me that it was more likely than not that my mum suffered the stroke first followed by the heart attack. His explanation seemed to make a lot of sense. But I am still angry that they made my mum suffered for several hours like that. The worst thing is that, like some other places I guess, the British NHS system is not perfect (and it is actually very under-funded) and people on a daily basis get left alone to suffer or to die slowly rather than being attended to immediately. However, even knowing this does not help much at all.

On a slight tangent, my Mum really loved loved diamonds. She loved and breathed them (this is where my addiction stemmed from). She left me several diamonds of different sizes and I don't really what to do with them. For the time being, I've put them on her altar (this is an Asian culture, you put up a table with a picture of yr loved one and you light an incense stick and put up offerings, mostly food, on the altar so that they can enjoy them, from wherever they are). I am sure my DH thinks this is a bit silly (though he's kind and sensitive enough not to mention anything).

And another thing, I keep praying that my Mum will "come back" and talk to me but so far it hasn't happened yet. My SIL told us that when her father passed away, he came back and spoke to everyone. I'm still hoping that it will happen to my mum and me.

I probably sound very silly but thanks so much again for letting me speak. I really appreciate all of you ladies and gents and yr kind words and thoughts.


ETA: DH just mentioned that my putting my Mum's diamonds on her altar is an excellent way for me to remember her (not that I will ever forget her, but I appreciate his words).

 

[simplysplendid]

Hi Lien, I am so sorry to hear of your loss as well as empathise with your frustration with the events that occurred and the lack of attention your mom received. The medical system is not perfect and even in Singapore, similiar situations do happen where there are not enough doctors on duty on Sundays. I understand that it is very difficult for you at this time so I hope you will find the strength to accept and come to terms with your mom''s passing and take as much time as you need to grief. At the same time, please bear in mind that it is an also extremely difficult time for your dad, The toughest time in such situations in my opinion is after the wake, when all the funeral matters have been sorted and your dad may find himself feeling lonely and missing your mom a great deal. Please accept that it is normal for your dad to cry, afterall, they have been married for so many years. Your mom was the closest person to your dad, so please allow your dad the space and time to grief.

 

[Phoenix]

Date: 8/1/2007 1:38:49 PM
Author: simplysplendid
Hi Lien, I am so sorry to hear of your loss as well as empathise with your frustration with the events that occurred and the lack of attention your mom received. The medical system is not perfect and even in Singapore, similiar situations do happen where there are not enough doctors on duty on Sundays. I understand that it is very difficult for you at this time so I hope you will find the strength to accept and come to terms with your mom''s passing and take as much time as you need to grief. At the same time, please bear in mind that it is an also extremely difficult time for your dad, The toughest time in such situations in my opinion is after the wake, when all the funeral matters have been sorted and your dad may find himself feeling lonely and missing your mom a great deal. Please accept that it is normal for your dad to cry, afterall, they have been married for so many years. Your mom was the closest person to your dad, so please allow your dad the space and time to grief.

Thank you for your kind words, SS. I must say I am surprised to hear that about S''pore. We''ve always received prompt proper medical attention here but admitedly we''ve never been in a life threatening situation so wouldn''t know about that, but I am sure you''re right. Isn''t that amazing though? It''s not like people don''t fall ill or get into a critical situation on Sundays?!

It is extremely difficult for me to come to terms with my Mom''s passing away but believe me, I am trying my hardest. You know what''s the worst part? The fact that this is one of my nightmares coming true: I''ve always dreaded not being able to be there for my Mum and Dad due to the fact that I am not in London. And it happened, didn''t it? I know I''ve said I''m trying not to blame my siblings for not having told me but I am still upset with them and it''s not like I can vent it out to them either, they''re grieving just as much as I am.

I am coping on a day to day basis, trying to do things that I think my Mum would (have) like(d). I hate talking about my Mum in the past tense, it''s so final. I still find it so hard to accept that she''s really gone though of course I know that she has.

You''re also absolutelly right abt my Dad. They were married for sixty years, can you imagine? I''d never seen him cry, not once, prior to all of this. Of course he should cry just like I know I should and we do! Believe me! My family and I also know that the hardest time for him is right now when he''s feeling most vulnerable and lonely. My siblings and their spouses and children try to visit as often as they can and they bring food for him or cook for him and generally just try to be there fore him. I also call my Dad practically on a daily basis and talk to him at length. I am also going back to London in a couple of weeks'' time to spend some time with him. In the meantime, we''ve managed to talk him into visiting my aunt and her husband in Paris as well as some of his friends in the next few weeks. Hopefully, that shouldl help somewhat.

Thank you again and thanks to everyone else too.

 

[Phoenix]

I've thinking about what everyone has said abt patients being left unattended in the hospitals and wondering if we'd been better off having my mum put under the private health system in the UK. The thing is I've personally been to both private and public hospitals in the UK as well as private and semi-private ones in S'pore. Whilst the private hospitals seem to be better than the semi's in S'pore, in the UK though private hospitals do not necessarily seem better. Once I was in a high-end private hospital (naming no name) in London, I was left alone for several hours without anyone coming in to check if I was ok. Granted it was a non-emergency, but I'd had a procedure and something could have gone wrong. Compare this to another time when I was in an NHS hospital just to have my tonsils taken out, after the procedure, nurses and doctors ketp coming to see if I was ok, taking my blood pressure etc. I've also heard, rightly or wrongly, that a lot of doctors who work in the private sector, at least in the UK, are not necessarily better qualified than the ones in the NHS; and also NHS doctors and nurses are the ones who truly care about their patients (as opposed to being motivated by money). I stress that I don't know these for a fact but I suspect that at least some who work in the private sector must be motivated by money and also probably have less stressful long working hours, which I must say i understand.

My family and I decided at the time that the NHS was better for my mum and all the doctors and nurses at this one hospital had gotten to know my mum and she was comfortable with them. But I keep asking myself if she'd been under the private system, would she have had better treatment, particularly would she got better attention when she was first admitedly after the stroke and the heart attack instead of being left to suffer for several hours like she was? What if a private hospital did have better qualifed doctors than the NHS one she attended/ was admitted to? Would she have been better off?

This is not meant to be a generalistion about NHS vs. the private sector, nor to start a debate. Just wondering if anyone has had experience or first hand knowledge with both and would care to share?

 

[bee*]

Lien, Im just after seeing this post now and I just want to offer my condolences. It is such a devastating loss and I can understand how angry you must be that you were not contacted. Im not sure about the NHS in the UK but I live in Ireland and we have a lot of similar problems in our hospitals also and what I seem to have found with the private vs NHS is that it really seems to depend on the hospital. Both of my grannies, who really were like second mothers to me as they lived with us, died in the same year. The one that had private really didn''t seem to have any better care than the public. She was also kept waiting for a few hours and unfortunately she died that night also. My granny that was in the public hospital got a bed straight away and unfortunately she was there for 2 months before she died. When I had to go to hospital, I had private cover under my dads insurance, and I got a bed straight away, but it was a different hospital than the one that my granny was in. So it really does seem to depend on which one you go to. Just want to say how sorry I am again.

 

[:)]

Lien, my condolences. I know this must be so hard for you. Right now you are going through a lot of the stages of grieving, and it is absolutely normal (and healthy) for you to do so. I wanted first of all to respond with my condolences, but also then to respond with what I hope *may* provide you with some comfort. It is obviously impossible to determine if how your mother was treated was appropriate or not and what she was a candidate for without seeing the records, etc, etc, but what I am hoping to do is to give you possibly some peace that maybe things were actually done appropriately (although possibly poorly communicated to your family). This is not intended as a defense, but a different perspective (and to provide some information that you may not be aware of). I am familiar with the NHS, but only very peripherally, and not fully versed on the nuts and bolts inner mechanics (such as lack of physician availability on Sundays). I am also not familiar with the range of services (cardiac, etc) available at the particular hospital your mother was taken to.

Here goes ... First of all, one of your concerns is that your mother was not treated in a timely manner with regards to the stroke or heart attack. You mention that you have done some internet reading and this is what raises the concern. You are worried that if she were treated sooner she may have lived. Please note that there are two different types of strokes - right now I do not know if she had a hemorrhagic (bleeding) type of stroke, or a embolic (clot) type of stroke. Hemorrhagic strokes are less common than embolic ones, and if hemorrhagic, then the ''clot busting'' treatments that there is a time frame to treat ("time is brain") would have killed her by making the bleed worse (hence the reason for starting with a ct scan at the outset to ensure no bleeding if ''clot busters'' are being considered). It is only the embolic strokes that are candidates for treatment with thrombolytics (= ''clot busters''). Hemorrhagic stroke treatment is more focused on underlying cause (such as invasively going after a bleeding aneurysm or a massively high blood pressure), although care can often end up being mostly supportive. Giving systemic thrombolytics for an MI would also run the risk of worsening bleeding in the brain.

Typically the hemorrhagic type of strokes show up early on a ct scan of the head, and again the ''clot buster'' therapies you always read about (and see on tv) are contraindicated in this setting due to the harm they may do. Embolic strokes take a bit longer to show up on scan, so if they actually saw an area of ischemia (or no blood flow causing dead cells) on the scan, then the stroke likely happened some time within the night while she was asleep, and giving her the thrombolytics (for either an MI or stroke) would already be contraindicated due to the length of time that had passed. There are also MANY other contradindications to thrombolytic therapy (and I know you listed multiple other medical problems), but without knowing your mom''s full history I will not even consider those at this time.

You note that your father woke up in the morning to your mother banging against the railing of the bed and that she could not talk from the time she was found. I would suspect one of two things - either she woke up with the stroke and could not call out to get your father (perhaps she was having chest pain at the time, with the sweating that you noted your father saw), so she cleverly rocked against the railing to get attention, or she was having a seizure from the stroke. The sheer fact that she was found in this state means that the last time she was actually seen functioning in her ''normal'' state (i.e fully speaking and in her normal state of mind) was the night before (unless they got up during the night to use the restroom or something and she was fine at that time). This in and of itself is an absolute contraindication to thrombolytic therapy (if it were an embolic stroke), as it automatically places her outside the 3 hour window (from a clear time of INITIAL ONSET of symptoms) to get the thrombolytics in. It is critical that someone be able to place a precise time on the last moment the person was seen in their normal state. Often thrombolytics are withheld because it is too risky to give thrombolytics outside of the 3 hour window, and the family only knows that their loved one was fine at bedtime, only to wake up with stroke symptoms that happened at some point during the night - impossible to say if they started 30 min prior to waking up, or 30 min after falling asleep.

I am also sorry that your family did not contact you when all this happened. They were likely quite overwhelmed and shocked with the unexpected nature of the situation and likely were not thinking clearly.

With regards to the pain that your sister says your mother was in (which is probably the most difficult for you and your family to think about at this time as no one wants a loved one to be in pain)... Medications are not completely innocuous. THey have side effects and drug-drug interactions. One of the main side effects in many of the more potent pain medications is a drop in blood pressure. Our bodies need a level of blood pressure to perfuse our vital organs. Actually, after a stoke you will find that, in the early stages after an embolic stroke, we actually run the blood pressure higher than you would expect to keep the brain perfused (and to try to keep perfusing any areas that may be at risk for extending the infarcted area and save as much brain as possible). It is plausible that, given she had just had both an MI and stroke, if they were large enough she was critically ill (her heart may have lost some ''pump function'' resulting in a lower blood pressure due to lower ability to pump out to maintain the pressure) and her blood pressure may already have been thus running very low. The medical staff may have been concerned that giving her pain medication (esp narcotics such as morphine, etc) would drop her pressure precipitously and put her at risk for further harm. At least I would hope this was the reason, and not that anyone felt she did not need pain medication if she was clearly in pain. It is hard to say exactly what the reasoning is, but whatever the reasoning, it does not appear that your family felt that it was clearly relayed to them and I am sorry about that. The nursing staff may not have even known that this was the physician''s concern (if it was his concern). Sometimes people in the medical profession think they have relayed informaton to someone (a patient, family member, a nurse, etc, etc) only to find out that it was not clear or was missed due to an overwhelming amount of information being communicated.

I am sorry this is so long, but I just felt badly for you and have written this in the hopes that you may find some comfort. Although I have made several assumptions in my reasoning, I am confident in the reasoning behind why she did not get any thrombolytic therapy. The pain issue is one I just tried to take a stab at (although I wish that the communication had been better). Again (as you know) I have not looked at the records, been involved in examining her, etc, etc so I cannot say for sure - I am simply trying to shed some explanations for what happened. If you are still concerned you could talk to the physician you mentioned in your family who could give you a better idea if he felt things were done properly or improperly (mostly regarding the pain issue).

I hope this brings you some semblence of peace,
Lisa

 

[Ellen]

Lisa, what a thoughtful post.

 

[lumpkin]

Wow, Lisa, that does provide a lot of insight.

Lien, I hope you find comfort in knowing that there''s a good possibility your mother''s care was very appropriate for the situation. The what ifs and should haves can be very difficult to deal with.

 

[Lorelei]

Date: 8/6/2007 9:27:37 AM
Author: Ellen
Lisa, what a thoughtful post.

Ditto that, wonderful post Lisa and I learned a lot from it, thank you.

Sending you hugs and support Lien

 

[diamondfan]

Lien, I hope you are feeling okay. I lost my dad many many years ago, and it is still tough. Just grant yourself that you will have better days and then worse ones. I find grieving is not linear, but more up and down, you might find yourself managing well and suddenly it will hit you again and you will feel very sad. I used to forget I could not call my dad or tell him something, and it would hit me again that he was gone. So please just do not be tough on yourself if you have a sad day when you felt you were coming to terms with things...I just think it is not how our minds and hearts work when we are dealing with a great loss. Sadly, too, people who mean well often say things that are not helpful or kind, but I hope their hearts are in the right place. It is so difficult to know what to say to someone who is grieving, and if they have never experienced a loss like that, it seems it is even tougher to find the right words. Sometimes just saying you are sorry and giving a hug is really the best option, but not everyone knows how to act in times of grief.

Also, Lucky, I do not mean to interject here, but I read through some of the posts after I posted and I really think the remark about people saying inappropriate things was more about people around her and her family...not about this thread. I could be wrong but...I sensed it was more about that and did not want to overstep as Lien also told you not to worry, but I just wanted to give my input after reading through some posts.

 

[:)]

Thank you guys, I appreciate your kind words. I just hope it helps Lien - Lien, still thinking of you and sending you hugs!

 

[Phoenix]

Date: 8/5/2007 6:44:40 PM
Author:
Lien, my condolences. I know this must be so hard for you. Right now you are going through a lot of the stages of grieving, and it is absolutely normal (and healthy) for you to do so. I wanted first of all to respond with my condolences, but also then to respond with what I hope *may* provide you with some comfort. It is obviously impossible to determine if how your mother was treated was appropriate or not and what she was a candidate for without seeing the records, etc, etc, but what I am hoping to do is to give you possibly some peace that maybe things were actually done appropriately (although possibly poorly communicated to your family). This is not intended as a defense, but a different perspective (and to provide some information that you may not be aware of). I am familiar with the NHS, but only very peripherally, and not fully versed on the nuts and bolts inner mechanics (such as lack of physician availability on Sundays). I am also not familiar with the range of services (cardiac, etc) available at the particular hospital your mother was taken to.

Here goes ... First of all, one of your concerns is that your mother was not treated in a timely manner with regards to the stroke or heart attack. You mention that you have done some internet reading and this is what raises the concern. You are worried that if she were treated sooner she may have lived. Please note that there are two different types of strokes - right now I do not know if she had a hemorrhagic (bleeding) type of stroke, or a embolic (clot) type of stroke. Hemorrhagic strokes are less common than embolic ones, and if hemorrhagic, then the 'clot busting' treatments that there is a time frame to treat ('time is brain') would have killed her by making the bleed worse (hence the reason for starting with a ct scan at the outset to ensure no bleeding if 'clot busters' are being considered). It is only the embolic strokes that are candidates for treatment with thrombolytics (= 'clot busters'). Hemorrhagic stroke treatment is more focused on underlying cause (such as invasively going after a bleeding aneurysm or a massively high blood pressure), although care can often end up being mostly supportive. Giving systemic thrombolytics for an MI would also run the risk of worsening bleeding in the brain.

Typically the hemorrhagic type of strokes show up early on a ct scan of the head, and again the 'clot buster' therapies you always read about (and see on tv) are contraindicated in this setting due to the harm they may do. Embolic strokes take a bit longer to show up on scan, so if they actually saw an area of ischemia (or no blood flow causing dead cells) on the scan, then the stroke likely happened some time within the night while she was asleep, and giving her the thrombolytics (for either an MI or stroke) would already be contraindicated due to the length of time that had passed. There are also MANY other contradindications to thrombolytic therapy (and I know you listed multiple other medical problems), but without knowing your mom's full history I will not even consider those at this time.

You note that your father woke up in the morning to your mother banging against the railing of the bed and that she could not talk from the time she was found. I would suspect one of two things - either she woke up with the stroke and could not call out to get your father (perhaps she was having chest pain at the time, with the sweating that you noted your father saw), so she cleverly rocked against the railing to get attention, or she was having a seizure from the stroke. The sheer fact that she was found in this state means that the last time she was actually seen functioning in her 'normal' state (i.e fully speaking and in her normal state of mind) was the night before (unless they got up during the night to use the restroom or something and she was fine at that time). This in and of itself is an absolute contraindication to thrombolytic therapy (if it were an embolic stroke), as it automatically places her outside the 3 hour window (from a clear time of INITIAL ONSET of symptoms) to get the thrombolytics in. It is critical that someone be able to place a precise time on the last moment the person was seen in their normal state. Often thrombolytics are withheld because it is too risky to give thrombolytics outside of the 3 hour window, and the family only knows that their loved one was fine at bedtime, only to wake up with stroke symptoms that happened at some point during the night - impossible to say if they started 30 min prior to waking up, or 30 min after falling asleep.

I am also sorry that your family did not contact you when all this happened. They were likely quite overwhelmed and shocked with the unexpected nature of the situation and likely were not thinking clearly.

With regards to the pain that your sister says your mother was in (which is probably the most difficult for you and your family to think about at this time as no one wants a loved one to be in pain)... Medications are not completely innocuous. THey have side effects and drug-drug interactions. One of the main side effects in many of the more potent pain medications is a drop in blood pressure. Our bodies need a level of blood pressure to perfuse our vital organs. Actually, after a stoke you will find that, in the early stages after an embolic stroke, we actually run the blood pressure higher than you would expect to keep the brain perfused (and to try to keep perfusing any areas that may be at risk for extending the infarcted area and save as much brain as possible). It is plausible that, given she had just had both an MI and stroke, if they were large enough she was critically ill (her heart may have lost some 'pump function' resulting in a lower blood pressure due to lower ability to pump out to maintain the pressure) and her blood pressure may already have been thus running very low. The medical staff may have been concerned that giving her pain medication (esp narcotics such as morphine, etc) would drop her pressure precipitously and put her at risk for further harm. At least I would hope this was the reason, and not that anyone felt she did not need pain medication if she was clearly in pain. It is hard to say exactly what the reasoning is, but whatever the reasoning, it does not appear that your family felt that it was clearly relayed to them and I am sorry about that. The nursing staff may not have even known that this was the physician's concern (if it was his concern). Sometimes people in the medical profession think they have relayed informaton to someone (a patient, family member, a nurse, etc, etc) only to find out that it was not clear or was missed due to an overwhelming amount of information being communicated.

I am sorry this is so long, but I just felt badly for you and have written this in the hopes that you may find some comfort. Although I have made several assumptions in my reasoning, I am confident in the reasoning behind why she did not get any thrombolytic therapy. The pain issue is one I just tried to take a stab at (although I wish that the communication had been better). Again (as you know) I have not looked at the records, been involved in examining her, etc, etc so I cannot say for sure - I am simply trying to shed some explanations for what happened. If you are still concerned you could talk to the physician you mentioned in your family who could give you a better idea if he felt things were done properly or improperly (mostly regarding the pain issue).

I hope this brings you some semblence of peace,
Lisa

Lisa,

Thank you so very very much for your very detailed post and insight. I am sorry I didn't respond straightaway. I was asked to go on a very urgent business assignment and after a lot of thinking, I decided that I would. I knew that they needed help and I also hoped that it would help me somewhat, as I was really falling apart (I was at someone's birthday party last Saturday and when people asked about my Mum, I kept saying that I didn't really want to talk about it and when someone kept asking, i just burst out crying and couldn't stop! I was just bawling, like a baby and some other diners at the restaurant we were at kept looking at me - not that I cared!). Well, the work really did help me, particularly as I was extremely busy, but now that I am back (just got back a few hours ago), I've been crying again...

I think my Mum had the embolic type of stroke, from what I remember my Dad told me. I also believe that she was consciously trying to hit the bar of the bed against the frame and was not having a seizure (my Dad told me he'd found her grabbing the bar/ arm with her left hand and using it to bang against the frame and not just hitting her hand in a seizure or merely shaking). It's educational what you say abt the 3 hour time frame. I will certainly speak to my Dad and ask him more about the last time he'd seen her in a "normal" state on that Saturday night and will also get a better understanding as to a more exact timing of when he woke up and found her sweating/ hitting the bed frame.

With regard to my family members not telling me (and my 2 brothers), I am still mad, esp. as I know some of my brothers and sisters, as well as the in-laws and grandchildren, were/ are not (or at least did/ do not appear to be) in as much pain as I (or some of my other siblings) am/ are/ were. It's going to be a long time before I can forgive them. I think they simply just did not think.

Re my Mum's being in pain and the wait, when I go back at the end of this month, I fully intend to go speak to the doctor who was on duty at the time, as well as the nurses or anyone else who was there who might be able to shed some more light.

What you wrote has indeed given me some peace and will certainly help me when I am back in London when I speak more to my Dad (hopefully I will be able to, I was reluctant to push my Dad when I was last there, he was already extremely distraught) and to the hospital staff. I really need to understand more what happened to my Mum and in a way, I know what I am doing is more for myself rather than helping my Dad and certainly cannot help my Mum, but I feel that I need to do this.

You are a kind, thoughtful person, Lisa and I am extremely grateful for your help.

 

[Phoenix]

Date: 8/6/2007 11:38:04 AM
Author: diamondfan
Lien, I hope you are feeling okay. I lost my dad many many years ago, and it is still tough. Just grant yourself that you will have better days and then worse ones. I find grieving is not linear, but more up and down, you might find yourself managing well and suddenly it will hit you again and you will feel very sad. I used to forget I could not call my dad or tell him something, and it would hit me again that he was gone. So please just do not be tough on yourself if you have a sad day when you felt you were coming to terms with things...I just think it is not how our minds and hearts work when we are dealing with a great loss. Sadly, too, people who mean well often say things that are not helpful or kind, but I hope their hearts are in the right place. It is so difficult to know what to say to someone who is grieving, and if they have never experienced a loss like that, it seems it is even tougher to find the right words. Sometimes just saying you are sorry and giving a hug is really the best option, but not everyone knows how to act in times of grief.

Also, Lucky, I do not mean to interject here, but I read through some of the posts after I posted and I really think the remark about people saying inappropriate things was more about people around her and her family...not about this thread. I could be wrong but...I sensed it was more about that and did not want to overstep as Lien also told you not to worry, but I just wanted to give my input after reading through some posts.

Caroline, you're absolutely right on many fronts. I find that I can be ok, in relative terms, some times and some other times, I feel so lost and devastated. Even when i was away on this assignment, I was mostly ok when I was actively doing the work and focusing on what I was trying to achieve, but in the evenings when I was by myself, I found myself thinking abt my poor Mum and Dad and I just felt so overwhelmly sad. A good friend of mine told me that her father passed away in 2003 and just the other day, she thought of him and sobbed uncontrolly for a good half an hour. She can't even talk about him, and I must admit I never knew how she felt until it happened to me. No-one knows how painful it is to lose their loved ones until it happens to them.

I do know that it must be awkward for people to know what to say in situations like this and you're also right that I was referring more to people in real life (friends, family etc.) and was not at all referring to PS'ers. Even when I said those things, in my heart, I knew that these people had good intentions and were trying to make me feel better. I guess I was and still am just angry that my Mum wasn't given the choice (though I don't know by whom, maybe God? maybe it was "her time", maybe it wasn't? who knows?) btw living and dying. I just know that my Mum would have chosen life, though I suspect that she may have been in tremendous pain/ discomfort (?) had she survived.

The PS community is an extremely supporting and caring one, and I am so very grateful to all of you who have written in with your kind words and thoughts and condolences. I truly am not upset with a single one of you. On the contrary, you've all been a pillar of strength and support and I thank you from the bottom of my heart.

 

[diamondfan]

I am sure that when you keep busy you can almost "forget", but in a lull it all can come back in a moment. And that is healthy and normal, I think. Losing a parent is something we can rationally accept, but the actuality of it is so different in my mind, especially when it is sudden. For me, my father was sick with cancer that spread, so from his initial issues til his death it was about 5 years, but toward the end, even as sick as he was, in my mind (I was 15) I really hoped for a miracle. I am now 41, and still get sad when I think of him. I named my first born son after him, and my husband thought it might be a sad thing to do, but on the contrary, makes me happy, and I hope my father can see his wonderful grandson, where ever he is.

I know with people''s comments, they can hurt, even if we try to understand. I know women who lost babies at birth or miscarried, and people told them the baby was in God''s hands or a better place or there was a reason, and though my friends understood intellectually what they meant, they really were so upset to find that those comments, most of them well meaning, really got to them. Again, sometimes the less said the better, just be a comforting presence and that is a good place to be. I definitely dealt with it, I was young, and my dad was so in pain and suffering that it likely was for the best, but each day he was alive gave me some hope. His death took that away with finality, and I hated accepting that.

You will always have your memories, and even if it is a bit painful, reminiscing and thinking about your mom is a bittersweet thing, and it will be tough sometimes, but worth it.

I also hope you did not mind my speaking so to speak on your behalf, I did not mean to overstep but was not sure when you would be back on the thread and did not want someone to be worried they had upset you...

 

[Linda W]

Lien,

I just saw your post for the first time today. I am so, so sorry for the loss of your beloved mother. Please accept my condolences to you and your family.

I lost my dear father 3 years ago. I know the pain you are going through, it just tears your heart and world apart. Please know that your dear mother will remain in your thoughts and in your heart forever. Everytime you close your eyes and dream, she will be with you.

Big hugs to you, dear Lien.

Linda

 

[IrishAngel7982]

Lien, I am so sorry for the loss of your dear Mom and the pain you and your family are dealing with right now. You and your family will be in my prayers through this very difficult time.

 

[hlmr]

Lien, just wanted you to know I have been thinking about you. Your pain is so fresh and raw, and no one who hasn''t experienced such a loss can possibly understand what you are going through right now.

Be good to yourself and try not to hold onto any anger or guilt. It has been 15 years since I lost my mother and I still miss her everyday.

 

[Stone Hunter]

So sorry to read this. I hope you find some comfort from the different things you are doing.

 

[VegasAngel]

Lien, I am sorry for the loss of your mother.

 

[ivanadiamond]

Lien, I am so sorry for your loss...my prayers are with you-

 

[Phoenix]

Date: 8/13/2007 10:58:52 AM
Author: diamondfan
I am sure that when you keep busy you can almost 'forget', but in a lull it all can come back in a moment. And that is healthy and normal, I think. Losing a parent is something we can rationally accept, but the actuality of it is so different in my mind, especially when it is sudden. For me, my father was sick with cancer that spread, so from his initial issues til his death it was about 5 years, but toward the end, even as sick as he was, in my mind (I was 15) I really hoped for a miracle. I am now 41, and still get sad when I think of him. I named my first born son after him, and my husband thought it might be a sad thing to do, but on the contrary, makes me happy, and I hope my father can see his wonderful grandson, where ever he is.

I know with people's comments, they can hurt, even if we try to understand. I know women who lost babies at birth or miscarried, and people told them the baby was in God's hands or a better place or there was a reason, and though my friends understood intellectually what they meant, they really were so upset to find that those comments, most of them well meaning, really got to them. Again, sometimes the less said the better, just be a comforting presence and that is a good place to be. I definitely dealt with it, I was young, and my dad was so in pain and suffering that it likely was for the best, but each day he was alive gave me some hope. His death took that away with finality, and I hated accepting that.

You will always have your memories, and even if it is a bit painful, reminiscing and thinking about your mom is a bittersweet thing, and it will be tough sometimes, but worth it.

I also hope you did not mind my speaking so to speak on your behalf, I did not mean to overstep but was not sure when you would be back on the thread and did not want someone to be worried they had upset you...

Caroline, you are amazingly intuitive and everything you've written is so very true and I totally relate to what you've said. No, you've not overstepped at all. I appreciate your posting yr comment. I am truly not upset with any PS'er and do not wish for any PS'ers to think they've said anything out of line. PS'ers, you guys, as I've mentioned, are truly supportive. True, it is very difficult to know what's the right thing to say when someone's loved one passes away. No-one knows how painful it is until it happens to them, but I absolutely do know that you guys have been/ are there for me and I truly appreciate you all. Just your being there and thinking abt me and my mom is more than I can ask for.

You do feel so much pain when you think, no you know, that your loved one would have preferred life to death and like yr father, Caroline, my mom was sick but her death WAS the finality. That's is so very hard to deal with . I will never hear her voice again, never again will I see her face (though of course when I think of her, I can hear her voice and picture her face in my head but it is not the same). There are so many things I'd have liked to tell her and so many things I'd have liked to have done for her but now I can't. And I know also that there are so many things she'd have liked to have done and said had she known death was coming. So it is also the sudden factor that's very difficult to deal with.

It's true also that we have many many beautiful memories of my mom that we'll always treasure. She was a beautiful person and we all loved her very much and as far as I am concerned, i will always always love her as will my family.

Thank you so much, everyone, for your amazing support. I know I'm repeating myself, but I feel truly blessed for having found this forum and having gotten to "know" you all. You guys rock!

 

[Phoenix]

Date: 8/11/2007 11:22:47 AM
Author: lienTN

Date: 8/5/2007 6:44:40 PM
Author:
Lien, my condolences. I know this must be so hard for you. Right now you are going through a lot of the stages of grieving, and it is absolutely normal (and healthy) for you to do so. I wanted first of all to respond with my condolences, but also then to respond with what I hope *may* provide you with some comfort. It is obviously impossible to determine if how your mother was treated was appropriate or not and what she was a candidate for without seeing the records, etc, etc, but what I am hoping to do is to give you possibly some peace that maybe things were actually done appropriately (although possibly poorly communicated to your family). This is not intended as a defense, but a different perspective (and to provide some information that you may not be aware of). I am familiar with the NHS, but only very peripherally, and not fully versed on the nuts and bolts inner mechanics (such as lack of physician availability on Sundays). I am also not familiar with the range of services (cardiac, etc) available at the particular hospital your mother was taken to.

Here goes ... First of all, one of your concerns is that your mother was not treated in a timely manner with regards to the stroke or heart attack. You mention that you have done some internet reading and this is what raises the concern. You are worried that if she were treated sooner she may have lived. Please note that there are two different types of strokes - right now I do not know if she had a hemorrhagic (bleeding) type of stroke, or a embolic (clot) type of stroke. Hemorrhagic strokes are less common than embolic ones, and if hemorrhagic, then the 'clot busting' treatments that there is a time frame to treat ('time is brain') would have killed her by making the bleed worse (hence the reason for starting with a ct scan at the outset to ensure no bleeding if 'clot busters' are being considered). It is only the embolic strokes that are candidates for treatment with thrombolytics (= 'clot busters'). Hemorrhagic stroke treatment is more focused on underlying cause (such as invasively going after a bleeding aneurysm or a massively high blood pressure), although care can often end up being mostly supportive. Giving systemic thrombolytics for an MI would also run the risk of worsening bleeding in the brain.

Typically the hemorrhagic type of strokes show up early on a ct scan of the head, and again the 'clot buster' therapies you always read about (and see on tv) are contraindicated in this setting due to the harm they may do. Embolic strokes take a bit longer to show up on scan, so if they actually saw an area of ischemia (or no blood flow causing dead cells) on the scan, then the stroke likely happened some time within the night while she was asleep, and giving her the thrombolytics (for either an MI or stroke) would already be contraindicated due to the length of time that had passed. There are also MANY other contradindications to thrombolytic therapy (and I know you listed multiple other medical problems), but without knowing your mom's full history I will not even consider those at this time.

You note that your father woke up in the morning to your mother banging against the railing of the bed and that she could not talk from the time she was found. I would suspect one of two things - either she woke up with the stroke and could not call out to get your father (perhaps she was having chest pain at the time, with the sweating that you noted your father saw), so she cleverly rocked against the railing to get attention, or she was having a seizure from the stroke. The sheer fact that she was found in this state means that the last time she was actually seen functioning in her 'normal' state (i.e fully speaking and in her normal state of mind) was the night before (unless they got up during the night to use the restroom or something and she was fine at that time). This in and of itself is an absolute contraindication to thrombolytic therapy (if it were an embolic stroke), as it automatically places her outside the 3 hour window (from a clear time of INITIAL ONSET of symptoms) to get the thrombolytics in. It is critical that someone be able to place a precise time on the last moment the person was seen in their normal state. Often thrombolytics are withheld because it is too risky to give thrombolytics outside of the 3 hour window, and the family only knows that their loved one was fine at bedtime, only to wake up with stroke symptoms that happened at some point during the night - impossible to say if they started 30 min prior to waking up, or 30 min after falling asleep.

I am also sorry that your family did not contact you when all this happened. They were likely quite overwhelmed and shocked with the unexpected nature of the situation and likely were not thinking clearly.

With regards to the pain that your sister says your mother was in (which is probably the most difficult for you and your family to think about at this time as no one wants a loved one to be in pain)... Medications are not completely innocuous. THey have side effects and drug-drug interactions. One of the main side effects in many of the more potent pain medications is a drop in blood pressure. Our bodies need a level of blood pressure to perfuse our vital organs. Actually, after a stoke you will find that, in the early stages after an embolic stroke, we actually run the blood pressure higher than you would expect to keep the brain perfused (and to try to keep perfusing any areas that may be at risk for extending the infarcted area and save as much brain as possible). It is plausible that, given she had just had both an MI and stroke, if they were large enough she was critically ill (her heart may have lost some 'pump function' resulting in a lower blood pressure due to lower ability to pump out to maintain the pressure) and her blood pressure may already have been thus running very low. The medical staff may have been concerned that giving her pain medication (esp narcotics such as morphine, etc) would drop her pressure precipitously and put her at risk for further harm. At least I would hope this was the reason, and not that anyone felt she did not need pain medication if she was clearly in pain. It is hard to say exactly what the reasoning is, but whatever the reasoning, it does not appear that your family felt that it was clearly relayed to them and I am sorry about that. The nursing staff may not have even known that this was the physician's concern (if it was his concern). Sometimes people in the medical profession think they have relayed informaton to someone (a patient, family member, a nurse, etc, etc) only to find out that it was not clear or was missed due to an overwhelming amount of information being communicated.

I am sorry this is so long, but I just felt badly for you and have written this in the hopes that you may find some comfort. Although I have made several assumptions in my reasoning, I am confident in the reasoning behind why she did not get any thrombolytic therapy. The pain issue is one I just tried to take a stab at (although I wish that the communication had been better). Again (as you know) I have not looked at the records, been involved in examining her, etc, etc so I cannot say for sure - I am simply trying to shed some explanations for what happened. If you are still concerned you could talk to the physician you mentioned in your family who could give you a better idea if he felt things were done properly or improperly (mostly regarding the pain issue).

I hope this brings you some semblence of peace,
Lisa

Lisa,

Thank you so very very much for your very detailed post and insight. I am sorry I didn't respond straightaway. I was asked to go on a very urgent business assignment and after a lot of thinking, I decided that I would. I knew that they needed help and I also hoped that it would help me somewhat, as I was really falling apart (I was at someone's birthday party last Saturday and when people asked about my Mum, I kept saying that I didn't really want to talk about it and when someone kept asking, i just burst out crying and couldn't stop! I was just bawling, like a baby and some other diners at the restaurant we were at kept looking at me - not that I cared!). Well, the work really did help me, particularly as I was extremely busy, but now that I am back (just got back a few hours ago), I've been crying again...

I think my Mum had the embolic type of stroke, from what I remember my Dad told me. I also believe that she was consciously trying to hit the bar of the bed against the frame and was not having a seizure (my Dad told me he'd found her grabbing the bar/ arm with her left hand and using it to bang against the frame and not just hitting her hand in a seizure or merely shaking). It's educational what you say abt the 3 hour time frame. I will certainly speak to my Dad and ask him more about the last time he'd seen her in a 'normal' state on that Saturday night and will also get a better understanding as to a more exact timing of when he woke up and found her sweating/ hitting the bed frame.

With regard to my family members not telling me (and my 2 brothers), I am still mad, esp. as I know some of my brothers and sisters, as well as the in-laws and grandchildren, were/ are not (or at least did/ do not appear to be) in as much pain as I (or some of my other siblings) am/ are/ were. It's going to be a long time before I can forgive them. I think they simply just did not think.

Re my Mum's being in pain and the wait, when I go back at the end of this month, I fully intend to go speak to the doctor who was on duty at the time, as well as the nurses or anyone else who was there who might be able to shed some more light.

What you wrote has indeed given me some peace and will certainly help me when I am back in London when I speak more to my Dad (hopefully I will be able to, I was reluctant to push my Dad when I was last there, he was already extremely distraught) and to the hospital staff. I really need to understand more what happened to my Mum and in a way, I know what I am doing is more for myself rather than helping my Dad and certainly cannot help my Mum, but I feel that I need to do this.

You are a kind, thoughtful person, Lisa and I am extremely grateful for your help.

Lisa,

I'd like to pick your brain some more, if I may.

Well, I am in london now and have just had a conversation with my dad who is convinced the doctor and nurses at the hospital that my mom was admitted to did everything they could have to save my mom. He said that they attended to her immediately and the wait of several hours was apparently a slight misunderstanding on my sister's part (who was the one telling me abt the wait). He says that they attended to her immediately, they ie. gave me an IV and oxygen when she was in the ambulance as well as conducted tests immediately her being admitted to the hospital and it was only after the intial check that she was left in a room whilst waiting for the results of the tests. He says I can go talk to doctor in charge at the time at the hospital but there was no point.

He also said that the last time he'd sêen my mom in her "normal" state was the Saturday night and it wasn't until about 5am Sunday morning that he'd heard her. It was possible that the stroke had occured some time before 5am but he hadn't been able to hear her.

He also told me something which upset me a great deal. My mom and dad came to visit us in S'pore in 2002 and at the time my mom had already lost a huge amount of weight (about 20-25lbs in one year prior). She also already had difficulty walking and complained of not being able to walk and not being well. So, we took her to a very well known hospital, one of the top in S'pore. Whilst she was there, they discovered she had water in her lungs since she had diffculty breathing and also conducted some other tests. One of the tests they did apparently was a spiral scanner (a catheter of some sort). Their main conclusion was that she had TB of the spine, which they said was the cause of her severe weight loss. They also said she had an enlarged heart and said any surgery would be out of the question since my mom was not in good health (she also had high blood pressure for several decades prior and also had a blood clot in her leg some time in 1993 - which almost caused her to have her leg amputated had I not taken her to the hospital at the first signs - for which she was given Warfarin which appeared to have helped).

After this, they returned to the UK where my mom was hopitalised for a year and a half during which time she initially lost all the use of and all the sensation in her legs. Since then until just now, I'd always thought that TB of the spine was what she had. I also believed that she responded positively to TB medication and was able to recover somewhat. At one point, she even started walking again. But later on, she got worse (apparently she got the 'flu and this was the beginning of the downwards slide in her health).

Now, my dad is saying he believes that the catether they inserted at the S'pore hospital had damaged her nerves (because the catether went through her spine). He says that she was able to walk prior to this and it was only after the procedure, that she lost the use of her legs. So i asked him why the severe weight loss and why she wasn't able to walk. He said that it was because of her (non-insulin dependent) diabetics that contributed to the former and the previous blood clot in her legs that caused her difficulty in walking.

I can't believe that the doctor in S'pore could have been so careless as to have caused this. My dad says that the doctor, who was in fact an Associate Professor at this top private hospital was probably inexperienced. So I said how could that be if he was an AP, to which my dad said that meant nothing! He also said a nurse may have performed the procedure which I can't believe was true.

I am really upset. I came in London to console my dad and to be with him in these very difficult times. Now it appears that my mom's illness and her not being able to walk (which my dad said was the cause of her general deterioration in health which eventually led to her death) were all down to me, since i asked them to come visit us in S'pore and I took her to this hospital. My dad also said that the flight from London to S'pore and the flight back were the cause of the water in her lungs. It appears that he's harboured these thoughts since 2002 and now he's telling me finally. He doesn't actually say "I blame you" but he doesn't need to.

I want to go back to S'pore tomorrow but know I can't do so, since I know he will blame me even more. And there I was thinking that I was the one who cared about them the most and who took care of them the most, in so many different ways. Now it seems that I am the one who's to blame for everything!

Lisa, is it possible that the catheter may have damaged my mom's nerves to the extent that she lost use of her legs? Is it also possible that what my dad said was true? that the weight loss and her not being able to walk were not caused by the TB of the spine and she in fact never had TB of the spine? I appreciate you can't give me a definitive answer but would appreciate knowing where I can look to for answers (if they are ever to be found).

I also intend to speak to the AP who was in charge of my mom's case at the time but not sure what Q's I can ask to get him to divulge relevant information, bearing in mind the fac that they may evade or be very careful with their answers in case we sue them (in fact, I have no intention of sueing them, i just want to know exactly what happened at that time).

My apologies for the long post and for bothering you again. Just when I thought i could slowly come to terms with the fact that my mom really is gone, I now have to deal with this horrible thing, this guilt that my dad has managed to lay upon me!

 

[Phoenix]

I talked to DH who said that what I'd posted earlier today was incorrect, that my mom never actually had a catheter that went anywhere near to her spine. True, they did insert a catheter but it went through the veins in her leg and then along some ateries that went up to her heart (when they did an examination of her heart).

I then explained this to my Dad who said that he suspects that the catheter may have damaged the sciatic nerve, when they inserted the catheter. He's still convinced that my mom never had TB of the spine. i did some research on this - Pott's disease- and apparently this only caused collapse of the spine at a later / advanced stage.

I then read the attending physician's report and apparently my mom went through a cardiac catheterization. The question now is: could this procedure have caused damage to my mum's sciatic nerve to the extent that it caused paralysis in her legs (noting that she actually regained the use of the legs a couple of years later).

I need to do some further reasearch but all of this new information, particularly my dad's allegations, is extremely upsetting. DH spoke to his mom (who herself went through the griveing process when DH's father passed away a couple of yrs ago), who said that most people, whose loved ones pass away, go through a grieving process which includes an anger stage and it appears that this is what my dad is going through. I know i must not get visibly upset with my dad or tell him that it's unfair he's blaming me, but oh boy, do I feel that's what he's doing.

 

[mrs.ROC]

LienTN, my condolences to you and a heartfelt hug out to you and your family at this time...

 

[Phoenix]

Date: 8/28/2007 12:47:46 AM
Author: mrs.ROC
LienTN, my condolences to you and a heartfelt hug out to you and your family at this time...

Thank you, Mrs Rock. I appreciate your kind thoughts and words.

If only I knew the detailed answers to my dad''s questions then I could put him as well as myself out of misery, wondering what really caused mum''s paralysis and death. I''ve done some further research which seems to indicate that my mum did indeed have advanced TB which eventually led to her death but I can''t be sure. One question that my dad keeps asking is why my mum''s legs were paralysed the night of the cardiac catherisation procedure, and I don''t have an anwer for this.

If any of you are medical professionals, I''d really appreciate getting some input and suggestions as to where I might look further.

 

[shminbabe]

Lien, I share your pain. My mom died on May 17. It''s totally strange to realize she gone. Gone. Vanished. A life, over.

She was blessed to have 60 years of marriage; my mom had 52! While she was too young to go, just 74, (writing this is like a punch in the stomach) I feel that her circle was complete. Marriage, kids, grandkids, lots of love. Hoping you will cope and grieve and remember your mom and feel her presense.

 

[KimberlyH]

Lien,

Just wanted you to know that I''m thinking of you as you continue to grieve. What a difficult and painful time.

~K

 

[Ellen]

Lien,

You are in my thoughts.