Death from ‘Complications’ of Multiple Sclerosis: The Unspeakable Bits from a Life With MS

When we first started writing the “Unspeakable Bits” blog, I resolved not to candy-coat the difficult parts of living with multiple sclerosis. I’d always intended to open the conversation about end-of-life and MS. I decided to broach the subject now, in the wake of the recent passing of our fellow “MSketeer,” Annette Funicello.

Social media sites erupted with kind words and remembrances of the actress. Soon, however, confusion began to set in as Disney’s press release attributed her death to “complications from multiple sclerosis.”  When a Canadian television video of her last days was broadcast as a remembrance, confusion became fear and concern.

My greatest fear when the dark days have me thinking about MS is that it might get “that bad,” but I must admit that I didn’t really know what that means. What does “advanced MS” look like?  How does MS get to “end stage”? What are these “complications of MS”?

As I stated in my first Unspeakable Bits, I have always felt that information is the counter to fear and that with knowledge – even knowledge of the nasty bits – I can make decisions for myself and my family that are based on sound reasoning. I am only qualified to speak from my personal knowledge and perspective when it comes to this sensitive subject. The Society will bring experts and additional information to address other aspects of the conversation on the MS Connection blog, much in the same way we covered the controversial subject of medical marijuana last month, to help shed light on this dark corner of MS.

It’s important to understand that there are treatments, exercises, medications and devices to help us manage the most challenging MS symptoms – even those that can eventually contribute to death. Being that death is something all of us must face in our own time, it may be helpful to understand how MS might be a factor. That level of complication is relatively rare, but it does happen. Just as I respect the feelings and experiences of those with the mildest forms of our disease, I also feel it is important to recognize and respect the feelings and experiences of those with aggressive forms of MS that can hasten death.

So, what might be some of the “complications” of MS that can cause death?
  • Pulmonary involvement
  • Severe infections, sepsis
  • Aspiration pneumonia
  • Suicide
Pulmonary Complications

A Society clinical bulletin on Pulmonary Function and Rehabilitation states that “Just as muscular weakness in the limbs occurs early in the disease and increases as the disease progresses, the same progressive weakening occurs in the ventilatory muscles. Ultimately, respiratory complications are considered the major cause of morbidity and mortality in individuals with advanced MS.”

Severe Infections

One of the hazards of advanced immobility due to MS can be pressure sores (commonly known as “bedsores”). Pressure sores begin as relatively benign problem, but if left untreated can quickly progress to a more serious concern (including sepsis – basically a full-body infection caused, in the case of pressure sores, by bacteria entering via the open wounds). Many factors can contribute to pressure sores; they include immobility or inactivity, decreased sensation, bowel or bladder incontinence and poor nutrition.

Other common infections which can lead to life-threatening consequences include recurrent and severe urinary tract infections (UTIs) and aspiration pneumonia.

Aspiration Pneumonia

Dysphagia – or swallowing problems – can cause food or liquid to be deposited into the lungs. The body sees this foreign matter as an intruder and sends its defenses to work. The resulting inflammation and fluid accumulation can lead to pneumonia.

Suicide

The reported rates of a person with MS taking their own life (or being assisted in doing so) range from just over 6% to nearly 15%. (Editor’s note: these rates are high compared to the general population, and result primarily from the high rate of undiagnosed and undertreated depression in MS. Depression, which is significantly more common in MS than in the general population or other chronic illnesses, is treatable. People who think they may be depressed should contact their healthcare providers as soon as possible.)

I found a wealth of information on advanced MS, but it took some digging. One resource I’d recommend to all of you is a publication called Caring for Loved Ones with Advanced MS: A Guide for Families. My wife and I have read through it several times and now feel better armed to do the advanced work which can be done to 1) understand palliative care, 2) address advanced medical directives and end-of-life wishes well in advance of needing them and 3) mitigate symptoms of depression.

Fear is what drove me to write this blog entry. I feel more at ease knowing just what my enemy might look like and somehow less fearful. I hope the same for you. Now, I’m going to go throw the ball to my dog because all this studying has reminded me that life with MS really is all about the living part.

Wishing you and your family the best of health.

Cheers
Trevis
Tags Caregiving, Healthcare      9 Appreciate this
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Trevis

Trevis Gleason, Blogger

You can follow Trevis via TrevisLGleason.com, his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.  

    55 Comments

  • Danielle   Jul 30, 2013 10:15 AM
    Thank you for sharing this. When I was diagnosed last year - I had no idea what MS was but when I read of people dying from "complications" I wondered what exactly that was but no one ever went into detail. It's not something I think about but yes, it is present way down on the list of things that I do think of when family/friends ask if people die from MS and really not having a clear answer for them.
  • Amber G   Jul 30, 2013 10:20 AM
    My dad died from end stages of MS. Diagnosed in 1975 & died in 2005. He could not speak, eat or move. His death certificate states he died from ms. People have tried to tell me that ms doesnt kill but it does we need to find a cure.
  • shelly   Jul 30, 2013 11:03 AM
    Well said! Thanks for discussing this difficult topic. My MS is well managed but it is scary when you see reports of people dying from "complications is me"
  • Erika   Jul 30, 2013 11:10 AM
    It is frightening to read this especially as I have also only been diagnosed a year this September... But to be forewarned is forearmed and yes life is for living and not dwelling too much on the negative aspects of MS.. Positive mental attitude is something I firmly believe in.
  • Melly   Jul 30, 2013 11:25 AM
    I'm frightened too. I found out recently I have SPMS, and am surprised at the lack of information available to me to learn more. I felt so well versed on RRMS. My primary doctor tells me MS is not a deadly disease. My MS specialist and I haven't had that discussion yet, really. Vague questions answered, but overall, I have the feeling that I need to find the info on my own regarding the mysterious complications. Thank you for this blog post. It really does address a couple of my biggest fears. I'm sad, and angry and feel lost with so little information, and so few treatment options. Once again, thank you for clearing up some of my questions.
  • Lisa Leverton   Jul 30, 2013 11:26 AM
    Thank you for writing this article. I have had MS for 15/20 years but diagnosed for 10. I would say I am a little obsessed with death. I wrote my death plan earlier this year explaining to my family that I did birth plans for their births it is only right to have a death plan. I want a natural burial and there are certain things that can and can't be done if you are having this kind of burial. Anyway I have researched and written it down and had some giggles along the way when I have told everyone they are going to have to dig my hole because I can't afford to pay the extra money for it to be done for me. Also I have told them no music, no hymns, no black.... going of track here again... I have always been led to believe that you can't die from MS its self without even thinking of complications that could come at the end so thanks again for the information and how to find more. I guess I am going to have to sit down and have this talk with those close at some stage.
  • Robin   Jul 30, 2013 11:48 AM
    Trevis,

    Thank you for the insights into this subject and for suggesting a publication to gain more knowledge.

    I was at a MS seminar last week and I asked the attending neurologist about this same topic. Surprisingly, he stated the same things that you have.

    Thank you for your blogs. They help to continue my MS education and to know that other MSers are wondering and thinking about the same things as me.
  • Andrea R. Hill   Jul 30, 2013 12:28 PM
    Bless you Travis, my name is Andrea and I have MS. Reading your words gave me a sense of calmness (if that makes any sense) I guess what I'm trying to say, it makes me feel good when someone can be so positive. At times I feel so strong, like I can conquer a convulsion or a weakened joint.....and at other times, I just want to pull the covers over my head and not get out of bed. I went from working for the City of New York (NYPD) I was a civilian employee who worked in Roll Call to becoming ill and not being able to work at all and have to live on Disability. Sometimes I feel worthless as if I can't do anything like I use to, so I depend on great family and friends and try not to let depression get hold of me, but it can be hard. I guess I just wanted to say Thank You and God Bless
  • Lisa Sheedy   Jul 30, 2013 12:29 PM
    Thanks for this. I have PPMS, and am now being treated by a pulmonary specialist as well as my neurologist. The scariest part of having both lung and swallowing issues is knowing what is likely to happen, and knowing that all the available scenarios for end of life care are awful. I was diagnosed in 2008, and have had no remission of any type. I appreciate the reference materials in particular.
  • Darcie   Jul 30, 2013 12:29 PM
    Brave soul, thank you. I have always wondered, but have never seen the possibilities listed out like this. Thank you.
  • Edna   Jul 30, 2013 12:36 PM
    Do you have a blog on relationship issues and MS?
  • Sally   Jul 30, 2013 12:51 PM
    Travis-Thank you so much for this blog. It not only informs us, but forewarns us. We now know what specific complications we should watch for. I have swallowing problems and always worried about choking on food, but never gave much thought to aspiration of liquids.

    Thanks too for your always positive posts on the different MS sites. Many of us look at you as not only an authority on living with MS, but also an advocate for all of us.
  • Thelma   Jul 30, 2013 12:55 PM
    You inspire me, Trevis. Many of these thoughts have been on the cusp of my scattered mind. I appreciate the resources and always need something new to feast upon.
    God Speed.
  • Margie   Jul 30, 2013 12:57 PM
    Great info, even if we don't like to hear it. I've seen my MS progress and know its a reality that I must face. Its such a hidden disease, "But you look fine" that I even forget what's happening inside, till I feel (or don't) it! I need to prepare everyone for what's possible to come. Thanks for sharing!
  • Pam M   Jul 30, 2013 1:51 PM
    Thank you so much for this article. I had wondered what the term "complications from MS" entailed, but could find no real information online. As devastating as it is, I feel better knowing more definitive information. Just like I felt when I was diagnosed with MS...sadness but also relief that my symptoms had a name and I could plan a strategy for dealing with it.
  • Teacher With MS   Jul 30, 2013 2:24 PM
    My cousin Charles died from "complications" of advanced MS. He had Primary Progressive MS and lived for 8 years (I think) after diagnosis, but was a quadriplegic for the last few years of his life. He could move one finger on one hand, and could summon emergency services when needed. He repeatedly contracted aspiration pneumonia toward the end. One day his little 8 year old girl had come home from school and was with him, no other adult home, when she suffered a major first seizure. He could do nothing to help except summon help, which he immediately did. I can't imagine, being stuck in my bed while my child was seizing right on the floor next to be, and no being able to help. Eventually, with medication, she's fine. But what a mess it became. Even Child Protective Services got involved The girl was no longer allowed to be at home alone with her dad. That ended up a great deal of money that the family didn't have. (debt creation) (Mom had gone back to work so they could survive). So yes, death from MS can be not the way any of us want to go. And, the years leading up to that death can be incredibly challenging (in many, many areas) and devastating to the MS patient and their family and friends.

    And then, what do we see on TV? "This person has MS, but MS doesn't have him!" ~sigh~ No wonder people say "You look so good!"
  • Rena   Jul 30, 2013 2:54 PM
    Thank you for the information. It helps to know what to watch out for. Diagnoses in 2007.
  • Michelle   Jul 30, 2013 3:19 PM
    Thanks for putting this in black & white. Ive had MS for 12 yrs & now have swollowing problems, often to scared to eat or drink infront of people. I live for now & try to escape when my mind thinks to hard. Crying in the shower seems to be my place, but i think im a strong person & will keep on keeping on. We all have to stay strong, one day this disease will be gone!
  • Susana Alvarado   Jul 30, 2013 3:21 PM
    Thanks for sharing this information, for so long I wanted to know about this topic (I was diagnosed in 2010) but hadn´t the courage to do it. Blessings foru you.
  • Leslie Fridman   Jul 30, 2013 4:14 PM
    Insightful, thought provoking and informative summary of an important subject...answering questions I and I'm sure, all my fellow MSers have asked.
  • sallyeaux   Jul 30, 2013 4:20 PM
    Watching that You Tube video you attached showing Annette's advanced stage of MS was probably the most frightening thing I've ever seen. But I thank you so much for posting it. I was diagnosed in 2005 (PPMS) and have so wanted Facts and all I seem to find are cliches and platitudes about "connections" and living fully and stuff like that. I really, really, REALLY appreciate the straightforward truth. Thank You
  • Rebecca   Jul 30, 2013 5:21 PM
    Thank you Trevis. I enjoyed your blog in reguards to MS.
  • Suzanne Soper   Jul 30, 2013 6:05 PM
    Trevis, Thank you for addressing "Death from MS Complications". I am 63, Dx'd with RRMS 27 years ago, and moved into "Chronic Progressive MS" status about 9 years ago. I have no feeling or use of my legs and feet, can't lift more than a pound, can't turn over in bed, suffer from bedsores, depression, vision problems are worsening, also have swallowing difficulty,and so on. My doctors always said "no one ever gets every possible MS symptom", but I often think I am the only person who is dealing with everything MS can throw at me. I have a wonderful husband who takes care of me totally, but I do worry what will happen if he passes away before me. I fear being stuck in a bed in a nursing home. So thank you for addressing progressive MS, as it seems like all I ever find is info on RRMS and for the newly Dx'd. No one ever wants to even mention that there are people with MS that DO have symptoms and problems that can and do contribute to death. I have every symptom you mentioned as something that can lead to death from MS complications. I have just found your blog but will be reading all you write, from now on. I so appreciate you talking about something other than RRMS.
  • Darlene Dodd   Jul 30, 2013 6:09 PM
    I have Primary Progressive MS. I live in pain every single day. It's been 6 years now. My whole world stopped at a snap of your finger. I started falling, and the pain, had to have help getting in the shower. I have always been a strong person. I have a family that loves me, & would do anything for me. But they will never know how much pain I live in. I know that I will fight this disease till I tack my last breath. I cannot remember from one minute to another. I play games to help keep my brain working. You can't give in to this creature that comes inside of your body.
  • Darlene Dodd   Jul 30, 2013 6:09 PM
    I have Primary Progressive MS. I live in pain every single day. It's been 6 years now. My whole world stopped at a snap of your finger. I started falling, and the pain, had to have help getting in the shower. I have always been a strong person. I have a family that loves me, & would do anything for me. But they will never know how much pain I live in. I know that I will fight this disease till I tack my last breath. I cannot remember from one minute to another. I play games to help keep my brain working. You can't give in to this creature that comes inside of your body.
  • rose   Jul 30, 2013 6:13 PM
    thanks for the honesty
    my daughter died from complications from MS but no one says MS is the reason the immunity declines, swallowing can declining,
  • charles   Jul 30, 2013 6:31 PM
    I just wanted to thank you for this article. I've always (since diagnosis) wanted to know of the MS complications which may lead to an unfortunate end but have been afraid to ask. I always say "don't ask a
  • Charles   Jul 30, 2013 6:40 PM
    I want to thank you for taking the time to write this. I've always wondered about the complications that may lead to an unfortunate end but have been afraid to ask. I always say "don't ask the question if you don't want the answer". So, although I didn't ask, you have helped to enlighten me and I thank you.
  • klaudie   Jul 30, 2013 6:53 PM
    the comments mention the youtube of the video that explain the end where is it ???
  • Arlene   Jul 30, 2013 7:02 PM
    Frightening but necessary topic. Thank you.
  • Mike Russell   Jul 30, 2013 7:20 PM
    Very well though out and insightful article Trevis. Thanks again for teaching us all the important MS facts to beware of.

    I truly appreciate your work and look forward to your articles. Thanks again and be safe
  • Mike Russell   Jul 30, 2013 7:23 PM
    Very well thought out and insightful article Trevis. Thanks again for teaching us all the important MS facts to be aware of.

    I truly appreciate your work and look forward to your articles. Thanks again and be safe
  • Angesexton   Jul 30, 2013 7:42 PM
    I lost a very close friend in Apr of this year. She had placed in the nursing home because she could no longer take care of herself. She went in Jan10. She got a UTI and had to go to the hospital. She passed 3 days later. I have MS as well. It's scary. It's just the unknown. I have my faith in God and I try to always lean on that for peace of mind.
  • Angesexton   Jul 30, 2013 7:42 PM
    I lost a very close friend in Apr of this year. She had placed in the nursing home because she could no longer take care of herself. She went in Jan10. She got a UTI and had to go to the hospital. She passed 3 days later. I have MS as well. It's scary. It's just the unknown. I have my faith in God and I try to always lean on that for peace of mind.
  • Marsha & John Baumann   Jul 30, 2013 8:37 PM
    Death is unknown, yet faith traditions hold that death is only a transition. Those of us who have MS (& our companions) live with the MS unknown on a daily basis. We believe the strength & courage that we have gained already, shall help guide us through end-life issues. The key thing that we read in Trevis' piece was his open communication with his wife. Finding someone - spouse, partner, friends, family who will be a willing companion on the journey of life & death is key in our minds. Our experience is that when we treat life as a series of problems to solve - more problems will emerge. It seems that there are only two choices - we can problem solve our way into misery OR step out and live into the mystery that life (and death) truly is.

    Blessings on your journey,
    Marsha - MS 15 years & John - My companion on the journey
  • Stacy Buzzell   Jul 30, 2013 8:40 PM
    Thank you for writing this, I, like many others have always wondered what the complications were that caused death.
    My father and I both had MS but sadly my dad just recently passed away due to complications and I have really been wondering what this really meant for my future. Thank you again for the info.
  • Patricia   Jul 30, 2013 9:33 PM
    You know being a nurse I understand a lot about neurological disorders. I have the pleasure of having MS. Found out in 2006 that I must have had it for at least 17 years then. So just as the myelin sheet can uncover areas of the CNS related to life, I choose not to be too afraid. Yet these last days are getting rough. Much pain and sleepiness. I at times say good bye to everything earthly before I go to sleep in the event MS snaps something that is vital to my life...like breathing/pulmonary functioning.
  • Cecilia Rich   Jul 30, 2013 10:18 PM
    Thanks so much for this piece! I also feel better facing the truth!
  • Grace   Jul 30, 2013 10:31 PM
    Hello,

    Thank you for answering this persistent question I have had for a long time. I had first bout in 1989, but not diagnosed for sure until 1992. I am still walking and talking but not able to work a 40 hour week, so living on disability. I frequently have the feeling of ineptitude, but i try to focus on what I do well. I'm trying to figure out a way to pay for one of these new drugs. If I go through the donut hole this year, I won't be able to go through it again next year. I want to try one of the new pills and see if I can go back to work. Then, I can get off Medicare and back on "real" insurance. That way, i can afford the co-pay for meds, and put more away for soon-to-come retirement. I truly believe attitude is everything, so I try really hard to find bright spots in my life. I also truly believe that we MS'ers are on the cusp of a cure. I expect it any day on the front page. I have plans and goals that are not as grand as they once were, but they are still there, and I'm going to try my hardest to make them happen!
  • Cathy   Jul 31, 2013 6:42 AM
    My grandmother died before I ever met her at 51 of complications of MS - congestive heart failure. She also though was stumbling a lot and had double vision from time to time. This was back in the early 60s.
  • Paula Wright   Jul 31, 2013 7:53 AM
    Just left the hospital two weeks ago after treatment for UTI. Had 106.5 F while in hospital. Still on Cipro until the end of this week. Running a low fever at night 99.7 F last night. 99.2 this AM. Don't know if I'm better or worse? But when it's time I'm ready, but not yet!! I'm 56 7 I'd like my grandsons to know me a bit better first. & I'd like to see them grow up, too!!
  • Linda De Maria Schierberg   Jul 31, 2013 9:22 AM
    I have been told by my dear freind's husband said "she doesn't have MS". Sometimes I feel guilty parking in a handicap when feeling pretty good considering. I know that by the time I come out of the stores likely carrying stuff I will be very sore and achy and happy the car is close. I walk very slowly. I am lucky with my mild symptoms it is said but sometimes I wish my Neuro had MS too to understand the acute pains exhaustion and so forth. I also did see the video of poor dear Annette F. and it horrified me. I am 50 had it diagnosed over 10 years ago although likely had it longer. Sleep is hard, meds, many tried, along with fibromyalgia some days I push through but others I have to drop. I was a very active sports gal, married srill over 23 years but no sex anymore but great love between us anyway. Why not, pain, and believe me my tolerance level is high. I shall eead what others say. I normally never do this or read MS books too deeply since I can still walk with or without a cane, just slowly and drive. Yes I am scared but I am here for a reason what's left of the old me. Depression always chases me but so far I am ahead of it. I can't ride horses anymore which really hurts. Heck I couldn't run or skip either. Stairs, curbs and hills are exhausting.
    ! am over weight from lack of exercise because of what else pain! I am careful not to talk about it because even friends should not have to hear boo hood for I am not ever going to be told I am also a hypochondriac. No pain management will concern themselves I and drug seeking for I am seeking relief from pains ! only. Will somebody maybe a woman like me tell me how they think and feel?
  • Martha Levy   Jul 31, 2013 10:20 AM
    Trevis, this scares me a lot, basically since it is just my Husband and I we don't have family around, and my Husband has his own health problems, I can see this is going to have to be something we are going to have to start making some kind of decision about.
  • Avatar
    msbendy  Aug 2, 2013 1:58 PM
    thank you so much for sharing this I will be following you on facebook as well I really need this info to ease my mind!
  • Sharon Korte   Aug 10, 2013 3:55 PM
    I think if someone has an advanced stage of any dehabilitaiting disease or condition they should be approved to be quietly put to rest.
  • Tommy V   Aug 10, 2013 11:06 PM
    My wife died from "Respritory Failure" due to MS in 2004. This video brought back many sad and desperate memories of helplessness I felt as it depicted her condition so closley. MaryAnn was diagnosed in 1975. Chronic Progressive MS, always worse, no remissions. Painfully slow, downward spiral. Impossible to describe. Heartbreaking...
  • Carolyn   Aug 14, 2013 1:23 PM
    I hope this is the beginning of opening discussion about this topic that makes us (me) uncomfortable .
  • Karen   Aug 22, 2013 10:30 AM
    Lyme disease and multiple sclerosis may have <something> in common
    The link below is an interview that discussed Lyme disease. Interesting!

    http://youtu.be/gW8CqR8PGWw
  • Karen Walker   Aug 22, 2013 3:51 PM
    Thank you for this. I was able to piece together the end after years of reading but no one, not even two neurologists I had an open communication with, would even respond to my emails of I'm at EDSS 8.5, what can I expect here on out.
  • leavingsoon2013  Aug 31, 2013 10:29 PM
    PLEASE LET THIS BE HEARD. I HAVE TONS OF STORIES TO TELL. BUT DON'T WANT TO RE-LIVE THEM. PLEASE LET PEOPLE KNOW WHEN THE TIME COMES, THEY WILL KNOW. BUY THE BOOKS 'FINAL EXIT' OR THE "LAST FIVE ACTS". SO THESE PEOPLE WONT HURT THEMSELVES! PEACE CAN HAPPEN
  • jude1234  Sep 18, 2013 11:49 AM
    I understand how you feel being in pain daily. I have had MS for 5 years. I do not work anymore , on disability, I cannot run , or jump. I sometimes have difficulty swallowing. Weird!! numbness in toes and fingers, painful knee and limp on my leg. vision is not good at times . Mouth pain jaw is bad daily . MS is a killer . It will get you . I got thru many trials but MS got me . MS you cannot beat , no matter what kind of sugar you place on it . M S is bad news .
  • Victor Bernal   Oct 9, 2013 10:57 PM
    Dear Trevis

    My wife passed away at 24th June of this year. She suffered from SPMS from 10 years ago. Some of the dangers that you mentioned can be prevented and avoided other. My wife had bedsores. The doctor recommended a mattress that had tubes alternately inflated and deflated with an electric air pump, and this way avoid pressure in a single part of the body.

    We do not buy it because we though the noise would not let her sleep.
    Instead we made her mobilization exercises, her muscles redeveloped. When she returned to have buttocks, sores disappeared.

    Also exercises prevented abnormal articulation bends and that saved him a lot of pain. My wife’s muscles was so similar to that of a normal person, especially in the legs to the extent that the doctor thought she could walk again. It unfortunately did not happen.
  • Becky   Oct 11, 2013 6:07 AM
    My dad passed away yesterday he had Secondary progressive MS. He developed a chest infection and my mum spoke to him in the night and he said he was ok and a few hours later he was gone. Regardless of the medical cause of death I genuinely believe my dad just wanted to be at peace. He really struggled with all the things MS robbed him of, he started losing his ability to walk a few years ago and then he started getting weakness in his arms. I think the final straw was when his sight deteriorated and he was finding it hard to swallow. My thoughts are with all those who have MS and I hope that the research that is on going leads to a cure/treatment to rid the world of this horrible disease.
  • casey   Oct 14, 2013 8:51 PM
    My mom had MS. She was diagnosed in 07 I think. She lived very well with it, until this past year when she began having trouble walking without a walker. About three months ago, she passed away. It started with pneumonia, then the doctor told me that her MS caused it to become ARDS. This ultimately deprived her body of oxygen, even on a ventilator. I had no idea that something as simple as pneumonia would end up being... The end. I guess knowing wouldn't have helped me, maybe just prepared me a little bit more. Her death certificate said "complications of MS". Guess I know it's real now.... For the record, I don't believe I have MS, but I'm only 25. She died at 52.
  • Bob   Oct 24, 2013 10:19 AM
    thanks for this blog
    my wife has been bedridden with progressive MS for almost six years, I have worked part-time for those years but now I find I have just had enough. I know I can get respite but, a few days away doesn't help in fact it makes it worse. I just want to lead a normal life, I am 55 and feel I need to do things for ME now I've cared for her for almost 20 years. Now I don't know if I even love her anymore and feel resentful. Extra care in the house wouldn't help me either because it's just the everyday living, and caring, feeding, toileting, tea making, boredom .... etc etc. If I bring up the subject of a carehome it is totally ruled out by her. I can't go on like this for much longer