This is very sad. But, who are we to try to stop his drinking etc. I totally understand his decision. Perhaps we need to be honest about advanced MS and accept that some people do not identify as 'warriors' and just want to 'check out'. That's why assisted dying should be available for advanced MS. I'm off to Switzerland when I've had enough. Logical, clear headed decision for me.
Was just going to make the same comment. Too sick to get to Switzerland, though I have started the process. I am only 58, and in the same state as this patient (minus the alcohol and obesity). I do have home podiatry, which hasn't been able to resolve my painful issues, and home visits by a GP, which also can't address anything else. Even sitting up is impossible due to extreme vertigo and fatigue. Really need to see the dentist and eye doctor, but just can't get there. I feel like 40 years of MS dug me into this hole and that, after years of exercising and meticulous diet, I didn't dig it myself...
i think all the neuro staff are primarily interested in medication - and new cases - while effectively ignoring those of us whove had ms for many many decades and been busy keeping ourselves as well as possible for as long as possible.
My neurologist has given me referrals to every top specialist who he thinks could help (immunologists, gastroenterologist, allergists). He has personally spent hours on the phone with me. I have some amazing and caring doctors, but I've been to all of them, had 5-6 colonoscopies and more scans and blood taken than I can count. I appreciate that all of them have hope for me, but given the current state of treatment for MS, there is nothing they can do for me.
Sandra, the extreme vertigo and fatigue. Understand completely. It’s very difficult to get to anywhere, finish things, etc much less volunteer. I don’t think people understand the bone crushing fatigue and symptoms. My best to you.
“He doesn’t have the motivation to climb out of the hole he has dug himself into.” Seems harsh and
lacks empathy. MS dug the hole and neurology didn’t have the ladders to help him get out. Losing a career, retirement, dreams…. MS is almost unique in the insidious way it slowly destroys a life. The medics can only watch the slow destruction that takes place - offering a pedicure or a stairlift adds insult to injury. This gentleman knows his time is up - there’s a big difference between living and exiting. If alcohol gives him a little relief from his awful predicament let him him continue. Sad that in 2024 there are probably thousands of similar cases across the U.K. - MSers in care homes or stuck downstairs… Therapies to address smouldering MS / progression would end this suffering and give hope, but remain as elusive as ever.
Very valid, Ian. I have a stairlift (very helpful for 9 years), but, currently, lying on the couch downstairs 30 feel away from a bathroom I'd need continuously, instead of upstairs, where there is a commode next to my bed and a bathroom that has been custom modified and 2 feet away, would not improve my non-existent quality of life: it would make it far more complicated for my family and more dangerous for me.
It is very sad, I feel the same some days , I have asked my doctor to do a DNR , I miss my old life, I used to be so active , but I’d never start drinking, I have trouble swallowing fluids so drinking isn’t an option, but understand why he does , I’m confined to my recliner most days and it’s an effort to go out , face book is my new social life , I have a wonderful hubby who’s my full time carer , I can’t walk, but I have some wonderful friends so I keep going no matter how hard it is sometimes
We all come to this disease with different personalities and life experiences. I accept my lot but it takes effort for me to start the day with any positivity. I am tired, pain and disability are tough, life is lonely, difficult and stressful, but I get on with it. However, if you told me today was my last day, I would be relieved. But it isn't, so the smile goes on and I continue to do it all day by day, because there are people who want me to.
This is exactly how I feel and how I go through life everyday. I live in Canada and we have MAiD (medical assistance in dying). I have downloaded the form and filled it out, but I haven't signed it. I'm all talk and no action right now, as it's true I will find relief upon my death, the people who love me will be left with pain, and I can't do that to them. As an aside, I read the most recent MAiD annual report and MS is well represented in that statistics of people who use this "service".
A very sad situation. It sounds like this man is chronically depressed? Maybe he needs an assessment of his mental health - a chance to talk about his pain - I can absolutely see why chronic illness causes checking out of life. We are all at risk…..
I think outsiders don't truly understand what it's like to deteriorate (slowly or more rapidly) during decades. At some point, I think most of us will feel we're 'tired of life'. Because we are tired of this way of living. Asking what you can do when the patient has reached that stage, is missing the point. It's the accumulation of all the years of struggling with MS, without ever getting a day off. Always trying to find solutions to deal with the same or a new problem. You don't need someone to look for yet another solution. It has just been enough. I hope that when I'm at that point, I'll get euthanasia easily, without having to put up another fight to prove that my MS is advanced enough or that I have suffered enough decades to have it ended. Because the doctors who have to judge about that will probably have no clue what it's like to have lived like that. It's not about the situation someone is in, it's about the whole process that brought him there.
Hi Gavin. Thanks for this post. Advanced MS is rather hidden 'out there' we experience. Not a feature of MS community discourse, not via the charities limited output at least.
My wife Portia has been through a number of 'tired of life' phases after 25 years of MS and very advanced (largely bedbound) the last 7 years or so.
Palliative nurse useful to have on hand to support and advise, but it's a complication of very advanced multiple complications, regular repeat infections and antibiotics, but not dying in our case.
Living through that, relentlessly, for many years is a huge strain, and does result certainly in being 'tired of life'. We see debate on enabling a choice on ending life, but for us that is not clear cut either, still just enough 'life' left between the difficulties. Just.
I am trying to get new interim director of services & support Gavin Atkins at MS Society (he is ex-Mind) to register and understand this, but don't hold your breath and he is interim.
Meanwhile, we endure this as best we can, largely on our own, with the bits of NZhS support we assemble. MS Trusts new Advanced MS Facebook Group is there if needed, but really not alot people can do other than commiserate.
Someone on there just lost their MSer. Makes me so sad that after a lifetime with MS there is so little MS community support at death stage and beyond for the surviving partner.
We could do so much more I think in this hidden space.
I don’t understand why MSers don’t get the access to the same care as a Cancer patient at end of life. I know that’s not perfect but there seems to be more.
There are Palliative Nurses, we have one, but you're right, no Macmillan equivalent. Perhaps as many at end of life due to MS complications like pneumonia/sepsis tend to still be using hospitals and it can catch you fairly quickly it seems from observations. We did that several times and survived and the hospital stays were becoming more of a problem so now opt for care at home only. Possibly a contributor to why we've kept going so long as we are 1-2-1 care and much more on it as a result, more immediate response. I feel the PEG has enabled this too. Allows Nutricia and meds to keep going in no matter the health situation, which then supports dealing with the health situations.
Thanks for finding the time to reply. I’m sure you don’t get a lot of spare moments in the day. My sister had Sepsis, (MS) overlooked and didn’t make it. I think all MSers need educating on the signs, those on DMTs vulnerable too. Then us oldies. Currently I have UTI that’s being pesky, sepsis is at back of my mind. It’s so fast.
I empathise with this gentleman. I think it is maybe better phrased as having lost all hope. When hope no longer exists the true reality of our disabilities is understood.
I agree 100% with Caroline trials new drugs et c all aimed at the young people ( which as I have said before with two children I am in full agreement) . But professor do you and other H.C.P. Not think we oldies would like to be around and also be able to spend time with loved ones instead of waving at them from the window is anyone doing research to help us?
After 36 years of 'the dis-ease' I took sometimes feel like this gentleman. Once I was 'upgraded' to SP and taken off of DMT (Copaxone) it felt like 'there is nothing 'they' can do for me now. Fortunately I have a wife and family who live close but this gentleman seems so alone with his thoughts. Sad beyond measure.
1. id be very tired of life if i was in his position - esp with sucessful career background. would you be able to get clean get sober act happy and generally 'pull yourself together'?
2. im guessing you decided what 'the most pressing problems' are? what does he think? what does his wife think? she could really help / needs help herself
3. is this man depressed ? would treating him for that be helpful?
have you thought of involving palliative care - very unhelpful name but maybe their quality of life approach might be good? i reckon they might be able to advise? tho involving them would prob piss your man off even more - you'ld have to be super clear they are symptom experts - and/or be honest that you think he wont live for ever
4. i fit lots of the general indicators of decline . why wont neuro staff ever discuss end of life with me? i dont think im at end of my life - but discussion would be reassuring that they know what they are doing (i dont think they do!)
I apologise for a short entry, my tiredness does get to me. I’m 25 now, and mirrored the exact feeling when I was 21. I know that age affects things, and it’s easy to say, it gets better. I have done a 180, when it comes to my mood. I feel people need/ a low moment is necessary, it’s not a sign of giving up. I try to place myself in this patients position, it’s hard but I can empathise all the same. The main worry for me is this subject’s age, and how it therefore affects those surrounding. What can be done if a person feels this way, and no amount of attempts to convince will change his own perception, only a plea of those close to them could hope to change things. To mirror some thoughts below, to me its not ‘tired of life’ but ‘tired of MS’ which is a huge difference. I’m sorry for a lack of coherence and discussion of the topic at hand. I just really wanted to share my viewpoint.
You say: ‘…how we, as a society, let people get into this state…’
How did broader society let or prevent him from doing this presumes it is the role of society to recognise the start of decline and try to mitigate it. It sounds beneficent and humanitarian but is it practical, desirable or achievable?
We get taught what are considered societally accepted norms and deviating from them is the responsibility and choice of the individual.
Besides, he didn’t suddenly turn this way overnight. It has been a process. The reasons why he made this choice don’t appear to have been related here. Perhaps he wasn’t asked, and if he declined to answer.
You can lead a horse to water…
We all have our lines. Perhaps he is just trying to find his.
How many people with MS don't want to be a 'burden' on family and loved ones and would rather be gone before it came to that. I know I'm not as far gone as some people but I get times during most days when I'm 'tired of life' because I can't see things getting any better in my lifetime. I definately want to check out before I'm a burden on anyone.
It may be that the man has an underlying medical problem not linked to his MS. This could be anaemia bought on by a slow bleed in his gut because of the alcohol consumption. He may be genuinely fed up with living but death is not something that comes to order (at least not in the UK) and is something many older people experience as they become distanced from their loved ones, experience more grief and loss. He probably feels that he is a burden to his wife, hates the sensation of falling and feels inadequate that he can't get back up again. All good reasons for taking more than a tipple. And lets face it MS is indeed a cruel disease yet too often the suffering and despair remains hidden.
I would suggest a chat with a community geriatrician who would be able to see the bigger picture and perhaps agree to a home visit to assess his cognition, mental health and general wellbeing. A GP could readily arrange a full blood screening test and even get the sample at home.
It may be that wider services, not necessarily MS focused, such as Age UK with their phone buddy scheme and other community activities may just help provide a glimmer of hope.
This is very sad. But, who are we to try to stop his drinking etc. I totally understand his decision. Perhaps we need to be honest about advanced MS and accept that some people do not identify as 'warriors' and just want to 'check out'. That's why assisted dying should be available for advanced MS. I'm off to Switzerland when I've had enough. Logical, clear headed decision for me.
Was just going to make the same comment. Too sick to get to Switzerland, though I have started the process. I am only 58, and in the same state as this patient (minus the alcohol and obesity). I do have home podiatry, which hasn't been able to resolve my painful issues, and home visits by a GP, which also can't address anything else. Even sitting up is impossible due to extreme vertigo and fatigue. Really need to see the dentist and eye doctor, but just can't get there. I feel like 40 years of MS dug me into this hole and that, after years of exercising and meticulous diet, I didn't dig it myself...
im so sorry to hear this, sandra.
i think all the neuro staff are primarily interested in medication - and new cases - while effectively ignoring those of us whove had ms for many many decades and been busy keeping ourselves as well as possible for as long as possible.
My neurologist has given me referrals to every top specialist who he thinks could help (immunologists, gastroenterologist, allergists). He has personally spent hours on the phone with me. I have some amazing and caring doctors, but I've been to all of them, had 5-6 colonoscopies and more scans and blood taken than I can count. I appreciate that all of them have hope for me, but given the current state of treatment for MS, there is nothing they can do for me.
❤️🩹
Yes. I agree.
Not Tired of Life. Exhausted from Multiple Sclerosis. Tired of life is Secondary. Sending warm wishes Sandra.
Sandra, the extreme vertigo and fatigue. Understand completely. It’s very difficult to get to anywhere, finish things, etc much less volunteer. I don’t think people understand the bone crushing fatigue and symptoms. My best to you.
“He doesn’t have the motivation to climb out of the hole he has dug himself into.” Seems harsh and
lacks empathy. MS dug the hole and neurology didn’t have the ladders to help him get out. Losing a career, retirement, dreams…. MS is almost unique in the insidious way it slowly destroys a life. The medics can only watch the slow destruction that takes place - offering a pedicure or a stairlift adds insult to injury. This gentleman knows his time is up - there’s a big difference between living and exiting. If alcohol gives him a little relief from his awful predicament let him him continue. Sad that in 2024 there are probably thousands of similar cases across the U.K. - MSers in care homes or stuck downstairs… Therapies to address smouldering MS / progression would end this suffering and give hope, but remain as elusive as ever.
Ian, it is not just the UK, unfortunately. :(
Very valid, Ian. I have a stairlift (very helpful for 9 years), but, currently, lying on the couch downstairs 30 feel away from a bathroom I'd need continuously, instead of upstairs, where there is a commode next to my bed and a bathroom that has been custom modified and 2 feet away, would not improve my non-existent quality of life: it would make it far more complicated for my family and more dangerous for me.
It is very sad, I feel the same some days , I have asked my doctor to do a DNR , I miss my old life, I used to be so active , but I’d never start drinking, I have trouble swallowing fluids so drinking isn’t an option, but understand why he does , I’m confined to my recliner most days and it’s an effort to go out , face book is my new social life , I have a wonderful hubby who’s my full time carer , I can’t walk, but I have some wonderful friends so I keep going no matter how hard it is sometimes
We all come to this disease with different personalities and life experiences. I accept my lot but it takes effort for me to start the day with any positivity. I am tired, pain and disability are tough, life is lonely, difficult and stressful, but I get on with it. However, if you told me today was my last day, I would be relieved. But it isn't, so the smile goes on and I continue to do it all day by day, because there are people who want me to.
This is exactly how I feel and how I go through life everyday. I live in Canada and we have MAiD (medical assistance in dying). I have downloaded the form and filled it out, but I haven't signed it. I'm all talk and no action right now, as it's true I will find relief upon my death, the people who love me will be left with pain, and I can't do that to them. As an aside, I read the most recent MAiD annual report and MS is well represented in that statistics of people who use this "service".
I live in Canada too and I also have made a decision to go this route but I’m not there yet. I definitely do not want to live ‘forever’💐
Yes, this is so true. It is one day at a time. Some days are just gone. Others, productive. But I usually feel otherworldly…
A very sad situation. It sounds like this man is chronically depressed? Maybe he needs an assessment of his mental health - a chance to talk about his pain - I can absolutely see why chronic illness causes checking out of life. We are all at risk…..
I think outsiders don't truly understand what it's like to deteriorate (slowly or more rapidly) during decades. At some point, I think most of us will feel we're 'tired of life'. Because we are tired of this way of living. Asking what you can do when the patient has reached that stage, is missing the point. It's the accumulation of all the years of struggling with MS, without ever getting a day off. Always trying to find solutions to deal with the same or a new problem. You don't need someone to look for yet another solution. It has just been enough. I hope that when I'm at that point, I'll get euthanasia easily, without having to put up another fight to prove that my MS is advanced enough or that I have suffered enough decades to have it ended. Because the doctors who have to judge about that will probably have no clue what it's like to have lived like that. It's not about the situation someone is in, it's about the whole process that brought him there.
I understand and agree with you. Some may call it suicidal ideation, I see it as a release.
Hi Gavin. Thanks for this post. Advanced MS is rather hidden 'out there' we experience. Not a feature of MS community discourse, not via the charities limited output at least.
My wife Portia has been through a number of 'tired of life' phases after 25 years of MS and very advanced (largely bedbound) the last 7 years or so.
Palliative nurse useful to have on hand to support and advise, but it's a complication of very advanced multiple complications, regular repeat infections and antibiotics, but not dying in our case.
Living through that, relentlessly, for many years is a huge strain, and does result certainly in being 'tired of life'. We see debate on enabling a choice on ending life, but for us that is not clear cut either, still just enough 'life' left between the difficulties. Just.
I am trying to get new interim director of services & support Gavin Atkins at MS Society (he is ex-Mind) to register and understand this, but don't hold your breath and he is interim.
Meanwhile, we endure this as best we can, largely on our own, with the bits of NZhS support we assemble. MS Trusts new Advanced MS Facebook Group is there if needed, but really not alot people can do other than commiserate.
Someone on there just lost their MSer. Makes me so sad that after a lifetime with MS there is so little MS community support at death stage and beyond for the surviving partner.
We could do so much more I think in this hidden space.
Mark & Portia
I don’t understand why MSers don’t get the access to the same care as a Cancer patient at end of life. I know that’s not perfect but there seems to be more.
There are Palliative Nurses, we have one, but you're right, no Macmillan equivalent. Perhaps as many at end of life due to MS complications like pneumonia/sepsis tend to still be using hospitals and it can catch you fairly quickly it seems from observations. We did that several times and survived and the hospital stays were becoming more of a problem so now opt for care at home only. Possibly a contributor to why we've kept going so long as we are 1-2-1 care and much more on it as a result, more immediate response. I feel the PEG has enabled this too. Allows Nutricia and meds to keep going in no matter the health situation, which then supports dealing with the health situations.
Thanks for finding the time to reply. I’m sure you don’t get a lot of spare moments in the day. My sister had Sepsis, (MS) overlooked and didn’t make it. I think all MSers need educating on the signs, those on DMTs vulnerable too. Then us oldies. Currently I have UTI that’s being pesky, sepsis is at back of my mind. It’s so fast.
I empathise with this gentleman. I think it is maybe better phrased as having lost all hope. When hope no longer exists the true reality of our disabilities is understood.
Its seems he has quite serious depression. MH services in this country are woefully under resourced.
I agree 100% with Caroline trials new drugs et c all aimed at the young people ( which as I have said before with two children I am in full agreement) . But professor do you and other H.C.P. Not think we oldies would like to be around and also be able to spend time with loved ones instead of waving at them from the window is anyone doing research to help us?
After 36 years of 'the dis-ease' I took sometimes feel like this gentleman. Once I was 'upgraded' to SP and taken off of DMT (Copaxone) it felt like 'there is nothing 'they' can do for me now. Fortunately I have a wife and family who live close but this gentleman seems so alone with his thoughts. Sad beyond measure.
1. id be very tired of life if i was in his position - esp with sucessful career background. would you be able to get clean get sober act happy and generally 'pull yourself together'?
2. im guessing you decided what 'the most pressing problems' are? what does he think? what does his wife think? she could really help / needs help herself
3. is this man depressed ? would treating him for that be helpful?
4. i just saw this : https://www.redwhale.co.uk/content/identifying-adults-approaching-end-of-life?pearl=true
have you thought of involving palliative care - very unhelpful name but maybe their quality of life approach might be good? i reckon they might be able to advise? tho involving them would prob piss your man off even more - you'ld have to be super clear they are symptom experts - and/or be honest that you think he wont live for ever
4. i fit lots of the general indicators of decline . why wont neuro staff ever discuss end of life with me? i dont think im at end of my life - but discussion would be reassuring that they know what they are doing (i dont think they do!)
I apologise for a short entry, my tiredness does get to me. I’m 25 now, and mirrored the exact feeling when I was 21. I know that age affects things, and it’s easy to say, it gets better. I have done a 180, when it comes to my mood. I feel people need/ a low moment is necessary, it’s not a sign of giving up. I try to place myself in this patients position, it’s hard but I can empathise all the same. The main worry for me is this subject’s age, and how it therefore affects those surrounding. What can be done if a person feels this way, and no amount of attempts to convince will change his own perception, only a plea of those close to them could hope to change things. To mirror some thoughts below, to me its not ‘tired of life’ but ‘tired of MS’ which is a huge difference. I’m sorry for a lack of coherence and discussion of the topic at hand. I just really wanted to share my viewpoint.
You say: ‘…how we, as a society, let people get into this state…’
How did broader society let or prevent him from doing this presumes it is the role of society to recognise the start of decline and try to mitigate it. It sounds beneficent and humanitarian but is it practical, desirable or achievable?
We get taught what are considered societally accepted norms and deviating from them is the responsibility and choice of the individual.
Besides, he didn’t suddenly turn this way overnight. It has been a process. The reasons why he made this choice don’t appear to have been related here. Perhaps he wasn’t asked, and if he declined to answer.
You can lead a horse to water…
We all have our lines. Perhaps he is just trying to find his.
Yes. I think you are correct in that view. Perhaps alcohol is his way of checking out..
How many people with MS don't want to be a 'burden' on family and loved ones and would rather be gone before it came to that. I know I'm not as far gone as some people but I get times during most days when I'm 'tired of life' because I can't see things getting any better in my lifetime. I definately want to check out before I'm a burden on anyone.
It may be that the man has an underlying medical problem not linked to his MS. This could be anaemia bought on by a slow bleed in his gut because of the alcohol consumption. He may be genuinely fed up with living but death is not something that comes to order (at least not in the UK) and is something many older people experience as they become distanced from their loved ones, experience more grief and loss. He probably feels that he is a burden to his wife, hates the sensation of falling and feels inadequate that he can't get back up again. All good reasons for taking more than a tipple. And lets face it MS is indeed a cruel disease yet too often the suffering and despair remains hidden.
I would suggest a chat with a community geriatrician who would be able to see the bigger picture and perhaps agree to a home visit to assess his cognition, mental health and general wellbeing. A GP could readily arrange a full blood screening test and even get the sample at home.
It may be that wider services, not necessarily MS focused, such as Age UK with their phone buddy scheme and other community activities may just help provide a glimmer of hope.