MS aging and mortality

[lenoreio]

My sister has adolescent onset, relapsing-remitting MS. She is now 52 and has been living with it for 30 years. She is barely walking, has chronic migraines, and numerous other uncomfortable symptoms. Her future looks bleaker every day. What's the reality for people in her situation in terms of mortality, what happens in the late stages? I have searched the internet, including this site and there is absolutely no information about causes of death in those with MS? It's as if it is a taboo topic. She is now seriously talking about assisted suicide, I wonder if majority of people end life in this way and this is why it isn't discussed.        

I am desperate for help. Incidentally, I think that the field does a disservice to those living with the disease not to have discussions on this topic, I know that my sister and her family feel so isolated and alone about it and even her prominent, NYC neurologist will not talk about it.

Thanks very much.  

[lenoreio]

First of all, you are all amazing and resilient people. I find that with my sister as well. Throughout the last 30 years, she has worked, at least part-time, to this day--as a therapist. I didn't give any of you details and I realize I did her a disservice.

My sister is married and her husband is the primary caretaker. That has been difficult on both of them, especially as she deteriorates. But he is there for her, and I think she does feel guilty about what that means to the quality of his life.

Secondly, she has been seeing a psychiatrist for many years and is on anti-depressants. He is a brilliant man, who was a neurologist before going into psychiatry. When it comes to her medical "team", she has good supports in place. I think her issue is an inability to take out of life the good fromt the bad. She is a little too consumed with her symptoms was so even before it got to this point.

The burdent of assisted suicide is what has struck me in this forum. I have been feeling as though it would be impossible to go to see her take her life, even if didn't directly help her, obviously the entire family would be consulted on such a decision and I think the conversations are just beginning and hopefully are years away. But I don't know.

I am going to encourage her on to this forum and print out these responses.

From the bottom of my heard, thank you very much for your compassion.

L      

[supermum_ms]

I just wrote a long reply and my stupid computer hickuped before i pressed post and sent it into cyber space, so sorry if this second attempt is not as thoughtfull.

From a deeply personal level that i wont willingly discuss on an open forum, please believe me when i say, I understand and have no problem accepting their individual and rational desicion. I really understand!

This isn't a concept of the greater good, it would be incorrect to assume that there is no burdon for those left behind in assisted suicide or even that it is a lesser burdon than assisting them in living, no matter how that needs to be. Their choice usually requires the intervention of another person, their choice inflicts a heavy burdon on the person that assists their suicide. The price they pay for their selfless assistance, is a price they pay for the remainder of their own life time and should not be minimised.

Assisted suicide is not usually an individual choice at all, it requires at least one other person because the individual who has made their choice, is not in a physical potition to fullfil their own wishes unaided, they require assistance. I say selfish because the person making that choice is released from the concequences of their desicion by their own death. It fullfills their own needs, self and that is what makes it selfish and not a selfless act.

Burdon is a concept that is different depending on who's perspective your coming from, a carer does not usually think of themselves as burdoned by the person they love. The feeling of being a burdon is a thought process within the person with the disease, their death releases them from their own feelings of burdoning their loved ones. Make no mistake with the reality of assisted suicide, the person who assists is for ever burdoned, their life is forever burdoned and for ever changed!

I dont believe this type of decisions are irrational thoughts on any level, but its not just about individual choices, assisted means someone else is involved and I think assisting someone in their death is going to be life altering for the one or ones that assist. They will carry that burdon to their grave, no matter what, I personal just wouldn't do that to someone I know and love, because it wouldn't be a selfless act of love for them but a selfless act of love for me.

Loving is never a burdon!

JJ

[Sumanadevii]

It is possible that she sees it as a selfless act.  Maybe she has decided she doesn't wish to be a burden to her family or to society.  I know the thought has crossed my mind.  I sure won't be a burden to my children or husband.  I am positive that will NOT happen.  So the natural next question is will I want society to carry the burden?  

She has been open about her feelings.  She seems to be preparing her family that these are her wishes.  It, like you said, isn't just an irrational thought.  From my perspective, she has a right to make that decision.  I think her family is blessed in being prepared by her.  They have the opportunity to support and surround her in her last moments.  Some families don't get that chance.

[supermum_ms]

From what I understand, MS isn't whats responsible for a persons death, it is the secondary issues, suicide, respirator, heart, cancer etc. I dont necessarily believe suicide is a taboo subject on the forum, though there is the problem of generating the add on depression aspect of the topic. Unfortunately when ever this topic is discussed openly, it is read by anyone and some of those anyones could be having suicidal thoughts already, and can in some circumstances push them over the edge.

So with that thought in mind, i implore anyone who is going through anxiety and or depression and has reached the point of having suicidal thoughts, I implore YOU, to please please pick up the phone and tell someone, NOW! Be brave and reach out to someone, it doesn't matter what country you are in, there are help lines with councelors ready to take your call. PICK UP THE PHONE!

In Australia we have Beyond Blue (1800 18 SANE (7263)), Life Line (13 11 14) and the Emergency services (000) I am sure there are many organisations like this all over the world, dont suffer in silence, reach out and make the call, please!
                **********************************

For me personally, I see suicide from a mental health perspective and (assisted) suicide from a disability perspective, as totally seperate issues. I dont believe assisted suicide has the same mental health elliments, more often than not the person who is contemplating assisted suicide is not experiencing a 'mental storm of dispare' which throws out all rational thoughts and reasonability. They have mentally discussed this topic, sometimes for years, long before they ever mention the words assisted suicide.

There is an acceptance that their life is exactly what it is, tomorrow isn't going to be better, its going to be more of the same and then some. Its not about loosing faith or even hope, its about acceptance that death is inevitable and where they have had limited or no choice in what has happened to them, they want to take back some level of control for the remainder of their life, even if that control is only in the how and when they will die.

There is an acceptance and a rational behind their thoughts, long before they start openly discusing assisted suicide, they usually are not mentally unstable at all, no spur of the moment act, it is a long long internally discussed weighing up of all their options, assisted suicide unfortuanately is one of the options they are thinking about.

If I agree with it or not isn't really the point behind what i'm saying, DNR's are readily accepted but assisted suicide will never reach a level of acceptance, no matter what the rational or reasoning, humanity can't go down that road because it would lead to the inevitable dire concequences, that line needs to be there. Where as I can understand where they are coming from, the problem for me is in the need for another person to be involved, their involvement isn't devoid of irrepairable concequences and certainly it stems from a very emotional and burdonsom mind when its a family member.

Assisted suicide maybe the ultimate selfish act, the people left behind are damaged for ever, regardless of the reason it happened and i'm not really comfortable changing the course of someone elses life because of the need to end mine. I dont think i or anyone contemplating assisted suicide has the right to do that to someone elses life, it would be from my perspective very unjust!

My 2 cents...............JJ

[Lulu54]

Hi Lenoreio (my mother & granddaughter's middle names is Lenore - I love it!).

You are right that this is a hidden topic,even though it is known that the suicide rate for people living with MS is higher than the average population.  

We treat our pets compassionately when it comes to end of life decisions but don't even want to talk about it when it comes to human life. I wish we could discuss it openly without stirring lots of debate, which becomes heated and often ugly.  

Death with dignity should be the right of every human.

There is considerable debate on the topic in England and there have been a number of high profile cases where the person went to Switzerland, and the Dignitas Clinic to end their life.  In the US it is now legal in Washington, Oregon and Montana, from what I understand but I don't know all the details of what the process involves.

I am so sorry your sister has suffered greatly with MS - it has to be hard not only for her but all of you who care for her as well.

hugs to all of you, Lulu

[addicted2harleys]

Hi and welcome to our forum.  I can feel for your sister in a great way.  I have been dealing with this for a few 6 short years compared to your sister.  I know that this is a lifetime disease and I do think of my future and wonder how it will turn out.  

I used to be a vibrant, fun loving biker chick that enjoyed life and lived it to the fullest.  Very happy with my life.  I am now in a wheelchair about 75% of the time.  I have a scooter, a walker, a shower seat, rails in my shower, rails around my toilet, 2 manual wheelchairs, I can no longer drive, have vision issues and I had to move in with my mother.  I no longer ride motorcycles, no social life, very few friends and am not happy where my life has changed.   So, I GET IT.  :(

I am in quite a bit of pain everyday.  I long to be able to wake up pain free just for one day...yet it never happens.  I do have good days, but they are far from my good days before.

I am a pharmacy.   I cannot believe how many pills I have to take for different symptoms everyday, just to get through a day.  

I try to keep my head above water.  Sometimes I feel it slipping.  I don't want to go under.  I struggle.  I am not ready to give in.  I want to see my grandchildren grow up.  I want to see my youngest daughter graduate.  I want to see what she decided to do with her life.  

I take anti depressants.  Willingly. I go see a counselor when I feel I need a little encouragement.  Willingly.  And I come to this forum.  Very willingly.  

For me, this forum has balanced me.  I am not alone in any of the things I am going through.  I get strength to go on from everyone on this list.  I receive validation and empowerment from everyone on this forum.  And, most of all, I have made friends that understand what I am going through.  I get support.  

I feel for your sister so much.  I understand what she is feeling.  I know she is tired.  It sounds as though she is giving in on her fight.  I'm sure she feels alone.  

May I ask if she is on any medications to control her symptoms?   This makes such a difference in quality of life. Also, do you think she is willing to see a counselor and maybe get some pharmaceutical help for her anxiety/depression?  And most of all, is she on a Disease Modifying Drug (DMD)?

I don't believe that death is a taboo subject with MS.  I just think that most people (at least here) are more interested in ways to improve quality of life and improve the DMD's.  I have to agree with samana and what she says here.

I thought I read somewhere that suicide was the highest percentage of cause of death with MS.  I could be wrong and I don't remember what the percentage was.  I didn't know there were any states that made it legal for assisted suicide.  This surprised me.  

I, personally, am far from ready to consider death, assisted or not, as an option for me.  I definitely have the means to do it without assistance.  My very own pharmacy.  As I am sure a lot of members here on the forum have themselves.  It just isn't an option.  

We do have a couple of members that have had MS for many, many years.  Some as long, if not longer, than your sister.  Maybe they will find your post and respond.  

I wish your sister peace, no matter what her decision turns out to be.  But, I truly hope that she could read what people from our forum have shared.  Maybe print it out for her?

Praying for your sister,
Addi

[Sumanadevii]

Many MS organizations and some MSers do a disservice ignoring those that are immobile.  One site I visited asked in a discussion "How long can you stand without holding onto something",  Few were offered more than a trip down "guilt lane" where blame was placed on them for not trying hard enough...lack of exercise and the correct diet.  There is an ugly side to this disease that most want to ignore.

Even as open minded as this site is, I wonder the reaction if someone said they were bound to a wheelchair, using a speech program to type and were unable to perform daily tasks.  Surely there are some out there yet none are heard from....odd isn't it?  Would our answers be I've had MS 30 years and....or I am still working, climbing mountains, etc???

I think your sister has found herself in a very lonely place.  I agree that depression is playing a role but I have to wonder, if she had others that could talk to her from their hearts how that might be of help.  I know when I was first dxed the nurse that Rebif sent out to teach me how to use the injector pointed to my scooter asking "Who uses that?".  When I answered me, she rolled her eyes then went into a lecture on PT.  Excuse me but she had no clue of my story and it was none of her business.  She was never allowed back into our home.

So your sister may be getting messages from the world where she is feeling she herself "caused" the problem.  I do hope you can find someone for her to speak with and soon.  I doubt medication alone is going to help.

[RedFlame]

I'm sorry to hear that your sister is having such a hard time!  The reality is that MS is a terrible, painful disease that can be disabling for many.  

Two years ago I was going to the gym 4 times a week, now I can barely walk and have to use a walker.  I have so much pain that I can't move and am awake much more than asleep in the night.  All of us here have different disease presentations.

I am only telling you this so that you and she will know that you are not alone.  And, I hope that both of you come back and share everything here because you will receive amazing support!!

It sounds like her pain is not being managed and she perhaps doesn't have things to help her with mobility.  

The important things that help us live and continue living are
1   close family contact and support
2   pain management
3   mobility aids including cars that can handle wheelchairs
4   case management with qualified social worker or nurse
5   in home care multiple times per week for laundry, grocery shopping, preparing meals
6   friends
7   peer support.

Is it possible to make sure she has all of these?  She is quite probably clinically depressed.  Perhaps seeing a therapist would help as well as anti-depressants

There are 5 states that have passed laws for assisted suicide with different requirements.  The patient has to take certain medicines that were prescribed.  

I have strong feelings and beliefs about this.  I do talk and write about this subject and I think it is important that it be discussed since people with MS are sometimes choosing this path.  

I would ask your sister what she needs to live.  

Red  

[essdipity]

It's very possible, even likely, that the life expectancy improvement for those with MS has increased dramatically because in days of old, only the most obvious and debilitating cases were diagnosed. Plenty of other people were in the limboland of the times, or misdiagnosed.

In modern times, it is clear that most of us will do quite well. I don't think that there is direct mortality due to MS, but complications of MS might well be the root cause for many. There are so many physical systems that can be affected.

I agree with Bob that more emphasis should be placed on treating the psychological/psychiatric effects of MS. They can cause more havoc than many physical symptoms. I also hope that your sister's suffering is being treated aggressively. Please help her to find a decent quality of life that focuses on the here and now, and gives her some joy in living.

I know you are very concerned or you wouldn't have posted. Good luck to you and her.

ess

[Audrey_M]

Like Sarah, I echo her sentiments in caring for your sister and at the same time watching a progressive disease take its toll on her body and spirit.

While MS is not thought of as a terminal illness, as with other chronic or progressive illnesses, complications from MS can cause death. Likewise, the deterioration caused by MS can have a significant impact on the quality of life and one's mental and emotional outlook. It is unfortunate that your sister's neuro will not discuss this with her; additionally, there are most likely legal ramifications for a physician to discuss assisted suicide with a patient.

I did find a thread of MS patients discussing the topic of euthanasia...try a web search "MS and euthanasia - what are your feelings?" to bring it up. Because assisted suicide is not legal, there seems to be very limited information or discussions.

I would think that forums have to be very careful to limit the scope of discussion on euthanasia to opinions.

The other thing to consider is talking to an organization that provides hospice services with the aim of being able to discuss things with a counselor. According to the American Hospice Foundation, MS patients also receive hospice services. It reads as if it is very important to your sister and your family that you all feel as if she has choices; hospice can do much to ensure that she gets support on multiple levels.

Audrey

[COBOB]

Sorry to hear that your sister and family are having issues with this.

In recent years, most people with MS die from the same things that kill people without MS:  Heart Attack, Stroke/CVA, accidents, cancer. etc.  Those that get to the point of being bedridden may die of "complications related to immobility:" mostly pulmonary embolism, stroke, pneumonia and infection.  The level and quality of care directly effects someones longevity. To the best of my knowledge, MS by itself is not a cause of death.  Last I heard, the average life expectancy of an individual with MS is about 7 years less than the average life expectancy.  The average woman should expect to live to about 71.81 Years based on the US Census Life expectation for women  being 78.81 years.  

"- In 1936, only 8% of patients were reported to survive beyond 20 years after onset of illness
- In 1961, over 80% of Multiple Sclerosis patients were reported surviving to 20 years after onset of illness
- 2002 – A patient with Multiple Sclerosis can expect to live to average population life-expectancy minus seven years (mean life expectancy - 7 years)"
http://www.themcfox.com/multiple-sclerosis/life-expectancy.htm

I guess there could be an increased risk of accidents, if you are driving when you should not.  Maybe there is an increased risk related to falls.  There are a lot of People with MS (PwMS) that continue to leave very productive lives from a wheelchair.  

I think the first thing you should consider is that MS is a CAUSE of depression.  MS lesions can damage the brain and change the cognitive processes.  So I think you should get your sister to see a psychiatrist.   Many PwMS need the attention of a psychopharmacologist and a cognitive behavioral therapist, especially if they are having suicidal ideation.  

Bob

[Sparkysarah]

Hi and welcome to the forum. It sounds as if you have and continue to be a very supportive sister and it is very hard watching someone you love deteriorate. I am afraid that I cannot answer your question as I simply do not have the information and I guess thinking about the progressiveness of the illness is something that many of us with MS do not try and think about too often.

Personally I find it encouraging that your sister has lived for 30 year with the condition, and I am sorry to hear that she is now suffering so much. I find that it is more helpful for me to focus on living in the present and enjoying each day as it comes as none of us knows how our own individual condition will progress.

I am sorry that I cannot answer your question. I have a close friend aged 44 who has Huntingdons Disease and her prognosis is very poor and she has already decided that she wishes to go to Dignitas at some point in the future and will use assisted suicide. It is a controversial subject and a very personal one but neurological conditions are very debilitating for those who suffer as they progress over time.

With best wishes

Sarah