‘Til Disability do We Part

 

Pam writes, “My husband told me last night that he feels like he has lost his wife. And since I am the one married to him, of course, I was devastated.“ I recognized this is only the latest version of an old, sad story.

“He no longer sees the me he fell in love with and married 15 years ago. Nope, he views me more as a roommate/friend and himself as a caregiver. I used to feel cherished by him; now I am just another obligation, like feeding the cat or cleaning the garage.”

I have heard this refrain too many times. It is a pathetic paradigm and hardly unusual. Husband feels put upon by wife’s disabling disease. It never seems to work the other way around. I have no business getting into other peoples’ business, but it hardly makes me proud to be of the male persuasion.

‘Til disability do we part? Isn’t that how it goes? I hear these kinds of stories about couples living in close quarters with MS. I am sure it apples to serious sickness of all kinds. I am neither a moralist nor a perfect person. I do know what dependence feels like. I relate to the discomfort of relying on others.

And I do know and acknowledge what my wife does for me every day, not out of obligation, I hope, but because she wants to. All of us are different. I, for one, try not to complain or criticize when things are done her way, not mine. I may have a tough life, but in many ways, hers is tougher because she is stuck with duel realities, living with the problems of two. And there are no complaints aimed at me.

We are privileged without question. I never lose sight of that.  Maybe this is as simple as the stereotype of Baby Boomers at their self-absorbed worst. I don’t know. I do think that those of us who need the help of others have to be careful not to take others for granted or treat our partners as employees. Responsibility cuts both ways.

38 Responses to ‘Til Disability do We Part

  1. Ann November 22, 2015 at 6:13 pm #

    For every man who drops the ball there are two who carry it. We rarely hear about them because they are too busy. Otherwise “Amen” to your post.

  2. Christopher November 23, 2015 at 1:00 pm #

    I see this kind of situation played out everywhere, including in my own family. When my mom was sick with terminal cancer I wasn’t really there; my brother was there for her though. I was researching ways to help her, but I wasn’t really there and sometimes rationalized my absence using my MS as an excuse. She even helped me when she was really sick. I didn’t even realize how self-absorbed I was being until it was too late. I was definitely in denial, and selfish with my time. I didn’t understand how strong it corrupts reality until much later. I don’t think it’s just males that act this way, but I do think it’s a cultural issue here in the U.S. mostly. To be there for another person means being there for that person. My mom tried hard to instill that in me and my brothers. Like going to visit my grandmother in a nursing facility–which ironically is where I am right now. She would say, “no matter what’s going on we show up for other people in our family. You need to get over yourselves.” She was right. It may take a certain type of person to deal with sickness, but I have to say that the women in my life have been much more available and selfless than the men.

    That IS pathetic.

    • Richard M. Cohen November 24, 2015 at 7:41 am #

      It is aad. I have no statistics on the gender question. It is anecdotal. Every such story I hear is about men fleeing. Maybe we make lousy caregivers because that does not fit our cultural take on ourselves.

      R.

      • Christopher November 26, 2015 at 5:59 am #

        I tried replying here but the reply got pushed to the bottom of the reply feed.

        Also, Happy Thanksgiving to you and your family.

      • Pam I Am December 1, 2015 at 3:57 pm #

        I’m just now getting back to the blog and saw that you mentioned my comments. I was once told by a neuropsychiatrist that no one tells men how to cope with the effects of a partner’s serious illness. Denial and emotional estrangement may be stages of grief that men–in particular–use to deal with a situation in which they feel they have no control. It doesn’t always mean that men don’t care or are looking for a way out. It may just mean they’re trying to process the many losses that affect them as well.

        Right now, we are recommitting ourselves to working through this. I received a ton of insight from all of the comments and have used them in our dialogues. We continue to be a work in progress.

        Thank you, Richard, for giving us a forum to discuss weighty topics that matter.

  3. Jan1 November 23, 2015 at 8:51 pm #

    Yes, Christoper, I can see that–though timing and maturity can enter in, too. When my sister had breast cancer, was I there, really there for her? Likely not, because of a few factors–my age/maturity/understanding at that point, perhaps.

    And then there’s today–I am an example of “failure in doing too much.” By that, I mean that I did WAY too much, esp. in feeling rather poorly to start. I am not walking well, my vision is off, eyes more dry, dizzy when looking peripherally, much ankle pain that I am basically ignoring (not too smart). But today was the only day to do what I wanted to do, and, by golly, did it I was determined to do.

    I won’t say how many errands. I will say that at the last one, I had to slump onto a bench 10 feet from my car, as even the cane wouldn’t have helped at that point. But then I grabbed my phone an read Richard’s most recent post here. Have to admit that I accomplished what I had set out to do. You bet. I could disguise my walking enough to barely plow through making dinner… but also that I am i a boatload of pain, wiped out and far from responsible in managing most of my day. (And I wonder why my husband looks somewhat frustrated with me?)

  4. Christopher November 24, 2015 at 1:33 am #

    I completely understand that. I’ve ended up with bad exacerbations by pushing too hard. In my post I was trying to make a point with a story about myself, albeit probably not well. You are right that maturity was a big part of it in my case, and probably in the case of a lot of people. But beyond maturity, how do you teach people to be selfless? Or more rightly, how does anyone LEARN to be selfless? In caring for someone with a significant illness or disability, you have to forget about a considerable part of yourself or you won’t be very effective in improving the other person’s health. That’s because emotional state is a big influence on physiological state. Both for the person being cared for as well as the caregiver.

  5. JoanZ November 24, 2015 at 7:05 am #

    This is one of those sad but true realities of disability. I’m sure my husband misses the old able me. Heck, I miss her too! But through the challenges, we’ve learned a new kind of intimacy, greater reliance on humor, and I never cease to be floored by the depth of his character. There is no choice but to stay in the moment and practice some serious gratitude.

    • Richard M. Cohen November 24, 2015 at 7:44 am #

      Both of you are fortunate to have each other, perhaps a somewhat rare partnership.

      R.

    • Ann November 24, 2015 at 9:54 am #

      Joan
      How nice to hear about another team that is weathering the storm with humor, gratitude and love. I am fortunate to have supportive spouse who can laugh with me rather than at me. His experiences with polio as a child and post-polio as an adult have forged a persevering, kind soul. He learned his care giving skills at a very young age from his mother who cared for him with her eye on his independence and abilities for life. He learned to celebrate the small gains early in life.

      • Jan1 November 24, 2015 at 10:19 am #

        An excellent Q–How does one really teach empathy amidst today’s generation? Can it be taught? It is in the DNA? How is “perspective” obtained? Hmm.

        Christopher, I think you put it rather well–my comments likely stemmed from my own personal issues yesterday, have to say.

        Joan, re “weathering the storm with humor, gratitude and love” I think does describe my husband many times. Not sure it fully describes me, likely because of my not fully accepting reality, a reality I seem to try so hard to ignore (even though it is rather obvious). I likely weather much, but not so much with a perspective of true reality.

        This Thanksgiving, I aim to get a better grip on gratefulness amidst reality. Thanks, all.

        • r. cohen November 25, 2015 at 12:20 pm #

          I believe empathy cannot be taught. It is a human quality one does or does not have. I wish it were otherwise.

          R.

  6. Jan1 November 24, 2015 at 10:21 am #

    oops–that was really directed toward Ann’s reply. I should likely first write in Word to avoid other errors too 🙂

  7. Louisa November 24, 2015 at 1:14 pm #

    I thought of so many things I want to say in response to Pam’s post, but I am not sure that most of it adds much so I will just make two quick points. The first is that our spouses only get one life too, and they are not only affected by the changes in us but the changes to their plans and hopes. The second is that, to me, the absolute worst part of MS is worrying that my children will get it too. And I know that that means my husband also “has” the worst part of MS.

  8. Kat November 24, 2015 at 4:15 pm #

    Joan Z, you hit the mark! I think about it every day how my husband and my kids must miss the able bodied me. The mental challenge is often times more difficult then the physical challenge. The guilt I feel can be overwhelming. I try to remind myself and he does as well that If the situation was reversed I would take care of him. But what is the breaking point. He’s been going through MS with me since I was 22. I have had MS for 24 years. Using a wheelchair for 10 of them. Humor is huge in our relationship. His attitude is better than mine, but I feel that I deserve to be negative when I feel like it. He lets me and then makes a joke or encourages me. I tell him that no matter how hard I try I just can’t bring him down and we laugh. I know he must keep inside his sadness for me and him and what we were and what we could have been.
    Louisa, I too worry that my girls might get MS as well. Every time I see them drop something on the ground my heart skips a beat. I try my best to live in the moment and not to worry about the future, but some days it’s so freaking hard!

  9. Yvonne November 24, 2015 at 5:42 pm #

    All of you that are married with supportive spouses are part of that lucky group whose spouse took those wedding vows seriously. It would be interesting to know how living longer effects the divorce rate. Til death do us part had an invisible asterisk for many facing a debilitating disease. Worse is when it strikes during your prime-retired’ grown kids, and suddenly the disbility you.ve lived with for 30 years suddenly truly disabled you and you’re own your own and thinking now what? Married with disability is hard. Try dating with disabilities. All that “someone for everyone just be patient” is as annoying as “you look great you must be reel ng better” BS. We all say it. We miss who we were. I am still flirtatious. Problem now I eventually have to get up and grab my walker. Snappy comebacks me feel better but doesn’t change the look I get and the inevitable question “what happened?”. Life freak in’ happen and like Karma it can be a bitch. So sometimes they leave spouses, lovers and friends. So, is the emotional loss worse than the physical one? I don’t know if I will ever find another emotional partner but I know I’ll never regain my physical abilities no matter what. I mourn the physical and miss the emotional. At least you have partners who are there trying to help as much as they can with something they really don’t understand.

  10. Yvonne November 24, 2015 at 5:44 pm #

    PS-this was NOT a cry for companionship just an observation of one more loss we potentially face.

    • Sue in Tx November 27, 2015 at 4:01 pm #

      Richard, thank you for repeating Pam’s words. Everyone here has given words to the cruelest part of MS– losing identity and changing relationships with those around us. I am glad to hear how yours and Ann’s experience with spouse has championed on. But I agree with commentator that stated spouse has life too. What is an ambitious full of life partner to do when the love of their life gets sick in their 20s or 30s and now needs to drop out of school or stop pursuing a career? What is an adventurous healthy wanderlust partner to do when the MS partner can no longer race down a mountain skiing or hike up a beautiful trail or kayak on a coastal area.? I’ve sat in lodge milking a hot cocco, or at mountain base lodge, and waved from the beach. It’s not the same. How about in ones 40s? I should be helping to save for retirement and saving for my children to go to college. But I’m not working right now. This was not part of either my or my spouse’s plan. We both worked our butts off to scratch out of a blue collar upbringing to middle class. But my medicine, and PT and drs and lack of income to pay off our loans leaves us short. How can my husband feel positive about this situation.? How can I? Yes, like Pam , my husband does not see me as the strong, bright, pretty, ambitious woman he married. I know it pains him to see me less than or different. So we love one another and struggle on. But I can not see our roles further degrading. I think there are limits no matter how much you love someone. We are both victims of this disease. So I hear Yvonne loud and clear. I know that if MS becomes too much for my relationship with my husband, no one is to blame. And, god forbid we reach that point, I have no real beliefs that MS would allow me to enter into another loving relationship. Who would willingly take that on?

  11. Louisa November 25, 2015 at 9:04 am #

    Again, I find myself with nothing helpful to say, Yvonne. So I’ll just say I heard you.

  12. Ann November 25, 2015 at 5:19 pm #

    Request for experiences. I am starting the use of Baclofen 10 mg / daily this weekend. I know this is a very small amount but I have been avoiding using this for many years. I would love to hear everyone’s experience, good, bad indifferent. My doctor says if it doesn’t help he can just increase the dose. My attitude is if it doesn’t help I can stop taking it.
    Comments please.

    • Sue in Tx November 27, 2015 at 3:24 pm #

      Ann, I’ve tried a number of anti spasticity meds. I hated them all With re to baclofen, I think a dr needs to work very closely with you to find the frequency and and amt that’s beneficial. My very good drs, didn’t give me a lot of guidance, seeing it as a trial and error problem
      I needed to figure out myself I think. I discovered that I use my increased tone to hold myself up and walk. Although baclofen gave me relief, if took away pain and spasms, I was too weak to walk. I also found there is a strong rebound affect after dose begins to wear off. I suffered almost a yr trying to find med that worked. Now I and only use magnesium calcium zinc tablets to maintain or encourage normal muscle tone. But I think my joints and bones are starting to show the damage of years of increased tone. Tred lightly with these powerful meds and keep your dr on speed dial to discuss whether it’s benefiting your quality of life.

  13. Betty November 25, 2015 at 7:10 pm #

    Ann, I’ll preface by saying I’m a veteran @ 20 years, and SPMS as defined for the past 3 years. I’m still upright using trekking poles and recently a walker to get around. In general, I stay pretty active (in slow motion, most of most days). I started taking Baclofen for spasticity about 1.5 years ago when at an annual check up my Neuro saw the rigidity and said, “You are working way too hard to move… try this and if it doesn’t help you can drop it”. She gave me a prescription for 10 mg 4 X d. I started w/ 2 X and it helped immediately. I have increased over time to 3 X d, and I wouldn’t want to be without it, 1. to keep me moving on my own, and 2. keeps leg spasticity at bay during the night allowing me to rest comfortably. Currently I take one about an hour before I get out of bed, say 5-6 am, then another mid day, and the last at bedtime 9-10 pm. 10 mg 3 X d is my magic formula for now, and does not cause me drowsiness, etc. I have on occasion experimented, and taken more, (up to 2 extra in 24 hours) and experienced dramatic muscle weakness, e.g. moving at all was dangerous. I’ve read that the maximum dosage for is 80-100 mg, and a Dr. once told me 120 isn’t unusual. For me, for now 3 is just right. Good luck.

  14. Christopher November 26, 2015 at 4:41 am #

    Ann,

    Baclofen like any other drug will affect different people in different amounts based on many variables. I say this first because I see this question a lot in the virtual world, and as far as it is related to physiology and medicine it is a fairly useless question. For a Yelp or Uber review it’s okay to get an idea of what you can expect. But with medicine, it’s really not a very helpful question except for a very general picture of side effects. It isn’t good for guaging whether a drug will work for you. I can tell you that Baclofen is basically a CNS depressant, and as such its greatest effect will be as a depressant/sedative. The effect of Baclofen will also depend on the location of your MS lesions, amount of nervous system damage and type of damage (transient or permanent). My experience has been that Baclofen just causes me to be really sedated and actually had a paradoxical effect on my spasticity–it makes it worse. I am hesitant to increase the dosage as I don’t think being more sedated will help. Also, referencing what I wrote above, writing about dosages won’t help anyone else because we are all affected differently by drugs based on so many different biological dynamics that what happens with the dosages becomes like comparing fingerprints. I will say that I tried decreasing the dosage, and trying different schedules, but it didn’t help the drug’s efficacy. I may just be a bad candidate for the drug based on a lot of stuff I’m unaware of; many people have similar experiences as me. But like I wrote above, it doesn’t help you in figuring out whether it may help you or not. The only way to know is to have a really good doctor go over the medical fact sheet (that little insert that unfolds like a roadmap) and explain all the positives and negatives to you, and then try it for yourself based on that. There is a caveat too. If you do look up personal experiences, and see almost all negative feedback about a drug, then it’s a really good idea to stay away from it. Decades of medical research shows that a majority of subjective opinions can’t all be accepted as purely anecdotal if it’s hundreds or thousands of people saying the same thing. I hope Baclofen works for you because spasticity sucks, big time.

    Lastly, have a Happy Thanksgiving… you, your family and everyone else here and their families too. Anything to get away from thinking too much about MS is good for emotional health and the soul.

  15. Christopher November 26, 2015 at 5:54 am #

    I think you hit on something universally similar with men, Richard. There is most likely a big cultural element to it, but there is something more that is actually observable in people; men and women alike, but mostly men. I don’t have a good enough vocabulary to describe it, unfortunately. It is observable though. I actually think empathy can be taught, but not in a didactic way. It has to be experiential, and the person has to be receptive to the lesson.

  16. Yvonne November 26, 2015 at 9:35 am #

    I am a women and I have always known that I am not a natural caregiver. That is why I decided to have just 1 child, who by the way was not planned. She appreciates her independent spirit but honestly it was developed because I loved my daughter but hated caregiving so she was encouraged to do a lot for herself early by both her father and I. She is a very compassionate child but like her father and I, she is not a caregiver by nature. I agree with Christopher. It can be learned but if not innate, other feelings will bubble up-frustration,resentment,impatience are just a few. Progressive diseases present new pop up challenges at any time during a relationship. My daughter will be there for me if I ask. I work hard to try not to ask but as thhe disease progresses my struggles are more obvious. Since we live in 2 different states it is easy to “hide”. You can’t do that in a marriage or partnership of any kind. The ugliness of disease is always there. So, don’t interpret reaction to your changes as you progress as a sign that they don’t love you. They may love you with all their heart but may not be cut out t be a caregiver and as a result are caught off guard emotionally and aren’t prepared. I am not mad with my ex for choosing to exit because it probably have bitter if he stayed…

  17. Christopher November 26, 2015 at 1:35 pm #

    I apologize for writing so much here. I’m not trying to be a conversation hog. But besides having little to do stuck in a hospital bed, I keep seeing issues that are really important to splay open and look at the guts.

    You brought up something very important, Yvonne, that I wanted to post here as a reply moths ago. Somebody touched on it above too. In the recent years of my MS experience of progression getting worse, I have really wrestled with this issue. I have seriously contemplated moving to a ‘right to die’ state a few times. It’s been a real struggle between competing parts of my core. As much as I value life, the preciousness of life and my own life… I also value the lives of the people around me. It’s a weird beast that terrorizes the world of the seriously disabled, the infirmed and those close to them. I have agonized, selfishly, over what I should do if I don’t get better and return to the same able-bodied Chris I was 13 years ago. I don’t want to live this way for the rest of my life I can’t get back to my normal. Mostly because I vacillate too much between wanting to do things myself and not imposing on others, and being frustrated because I can’t do things myself and having to rely on others who can be inconsistent and unreliable at times. It brings a whole new meaning to learning patience that is really painful. I also know that there is little chance of me ever getting that much better–it’s a cruel reality that few neurologists ever reveal to their patients, and that is if your MS progresses it can’t go back. That’s why they try so hard to arrest it or at least slow it down. Knowing all this just makes everything more difficult because I know I will always need a lot of help, and I don’t want to be a burden on anyone else. If I go quickly, then it would just be temporarily painful for those close to me. But if my disease lasts for years, then it not only heavily impacts the lives of those closest to me–no matter what they say–but it also restricts their freedom to live fully, as well as mine. This all weighs on me almost every single day, and it’s hard to reconcile which path is best for me with this daily emotional, and value centered, guerilla war in my mind. I understand the last part you wrote pretty closely, Yvonne. Because I too wouldn’t have been angry with my last girlfriend for leaving. But unlike you I held on too long and made things worse, and we both ultimately parted ways equally quite bitter. I can’t do that to someone again, and I still regret that ending. I also personally experienced what happens to a person who puts others’ needs before his or her own, to his or her detriment. That was my mother. She put others’ needs before her own mostly, I believe, because of her upbringing by her grandparents and her deep understanding of what family as a strong foundation in life. But she didn’t really have a braking system in place, and she put others’ needs before her own constantly. It cost her many years of putting her own life on hold, and ultimately cost her her life.

    So every day is really difficult emotionally besides physically, and I don’t think many people understand that about the person with the disability. I am very grateful for the sacrifice and help of those closest to me. But at the same time I hate the burden I am many times to these people I care very much for. I want to keep living the best I can, being as independent as I can. But I also don’t want to live this way being an incomplete person and continually getting worse and more dependent on others. And the weird part, though my psychologist told me it’s a part of the grieving process, is that I think about ending this and I’m not even that disabled yet. Though I am pretty much bed bound right now. It’s hard to get past all the competing thoughts. But I keep trying really hard to learn from all of it, and hopefully develop something new that can help me and others get past it.

    Because life IS very precious. Ironic that I’ve considered moving to a ‘right to die’ state, but I refuse to sign a DNR. I think that speaks volumes about what ultimately informs my decisions.

    Happy Thanksgiving, everyone. I am so very thankful for all of your kindness and wisdom every time I visit here.

  18. Christopher November 26, 2015 at 1:41 pm #

    I wasn’t implying that you consider death as an alternative, Yvonne. But that I totally understand being a burden on those closest that we love and who love us, and how much it affects everyone.

  19. Yvonne November 26, 2015 at 6:00 pm #

    Christopher although I have never contemplated suicide I am constantly worried about being a burden. I often think about nursing homes and the horror stories one hears on the news about abuse. I don’t know what I will do if I completely lose the ability to care for myself. It’s a scary thought for many of us I am sure whether you are married or single. You being in the physical state you are in right now gives you more awareness of the fickle finger of fate and therefore it can preoccupy your thoughts. As my mobility wanes I contemplate all the what ifs whether it’s tomorrow, next month or next year I know my fate and all the prayers and talks of cures or suggestions to “stay busy and keep your mind active” doesn’t help calm my fears. We have to face our fears and make decisions. Our decisions may be different Christopher but our fears are the same whether we want to admit it or not. Dependency isn’t attractive to anyone. Talking about it honestly in this forum helps work through some of it so I appreciate your frankness of expressing yourself. Straight no chaser. Hope you had something wonderful happen today to quiet the chatter…if only for a little while 🙂 My legs aren’t working well right now so I stayed home and zoned out on no brainer TV shows:-)

  20. Anne November 28, 2015 at 1:20 pm #

    In canada the MS society puts ads (?) throughout different sections of the newspaper that states “MS Lives here”. That is the reality, MS impacts the entire household, the patient, the spouse and the children. most of us here have MS in common but each of us have our individual journey.
    I used to be the person that did everything in my household, my husband travelled in his business so I just did everything myself. Now I am unable to do any of the physical work around the house. My husband took early retirement and has stepped in and now he is the one that does most things around the house. I know I am fortunate that this is how it played out. I, as Richard previously stated, have to remember to be thankful for this and to keep criticisms of how and when the work is done to myself.
    Christopher, I also believe in the “right to die”, when and if the time comes. I may not be physically the person I once was, but I still feel like me. I am still the person my adult children call first, with good or bad news, so I know they also still see me as me. I think the reason that you will not sign a DNR is because the time is not now. You still have a lot to give and I appreciate reading your comments and your contribution to this blog. You are right, life is precious and we must remember that.

    I

  21. Kat November 29, 2015 at 11:36 am #

    Many people with MS are emotionally strong. Some more than others. I wonder what gives the brilliant scientist Stephen Hawking his emotional strength being that he is so incredibly disabled and reliant upon others. Christopher Reeve is another person that lived with being incredibly disabled until he died from I believe, an infection caused by a bedsore. Yes they are two very accomplished people who not only have family that care/cared about and love them, but also have/had the financial means to have a lot of hired help. Even though they can/could rely on people they hire to help them with their physical needs, they still must feel or have felt like a burden at times to their loved ones. Do we just have to get over the guilt we feel in being a burden to our loved ones? There are also millions of non famous people more disabled than ourselves living with incredible challenges and relying on family members to help them with every possible physical need. Should we stop feeling the guilt of being a burden and just choose to live the best we can emotionally and physically? If we have to rely on others, so be it. If they leave us are they weak people or only human?

  22. Yvonne November 29, 2015 at 10:27 pm #

    Kat well put. I do not think they are weak. Like us they are struggling to cope with the changes. Unlike us…they have a choice.

  23. michael December 1, 2015 at 3:02 pm #

    Every time somebody tells me how lucky my wife is to have me take care of her as if she were a burden it’s all I can do to not start throwing haymakers. Yeah its tough, yeah she can be difficult, but so can I and I’m just a simple alcoholic.

  24. Pam I Am December 1, 2015 at 3:58 pm #

    I’m just now getting back to the blog and saw that you mentioned my comments. I was once told by a neuropsychiatrist that no one tells men how to cope with the effects of a partner’s serious illness. Denial and emotional estrangement may be stages of grief that men–in particular–use to deal with a situation in which they feel they have no control. It doesn’t always mean that men don’t care or are looking for a way out. It may just mean they’re trying to process the many losses that affect them as well.

    Right now, we are recommitting ourselves to working through this. I received a ton of insight from all of the comments and have used them in our dialogues. We continue to be a work in progress.

    Thank you, Richard, for giving us a forum to discuss weighty topics that matter.

  25. Ann December 3, 2015 at 11:24 am #

    I haven’t written recently but have some thoughts to share. First off, to Betty and Christopher, thank you for your comments on using baclofen. Betty your experiences were so encouraging and it was calming to have your insight. Christopher you remind me of my father and brother rolled up into one. I miss their reality checks and how to approach making decisions in this MS world.
    My brother had primary progressive MS. He frequently attempted to take control of his life by attempting suicide. Every time I hear someone wanting to leave this world early due to their dependence on others, I want to say “How dare you!”. The loss of someone is difficult enough but the loss due to suicide is worse. No your loved ones do not get over it and move on. The pain never ends and the guilt that maybe you (the caregiver, spouse, child, mom,dad…..) missed something, should have seen it coming never leaves. It also removes your presence from their lives when just maybe there are some future events you should experience (The birth of your grandchild, the graduation of your children).
    In addition maybe there are some lessons you still have to share with others. We never know who is listening to our thoughts, experiences ….
    My final thanks is for Michael. My husband loved your comment and seconds it.
    PS The baclofen has enabled me to feel my legs again for the first time in years:)

  26. Christopher December 3, 2015 at 8:52 pm #

    Ann,

    That is awesome that Baclofen helped you so well. I am really heartened to hear that. Unfortunately this stupid disease affects everyone differently, and the drug’s do too. It just didn’t work for me, even though I was really hoping it would give me some relief. It actually has a paradoxical effect on me and makes the spasticity worse. Same with Ampyra. I would love to not have to take ANY drugs. But my situation makes it nearly impossible to go a more organic route. I just want to clarify something quickly… I use the words “drug” and “drugs” a lot, and that’s on purpose. The distinction between a drug and medicine is that ‘medicine’ actually provides a cure. Drugs just help ameliorate symptoms from a disease or condition. I hope that helps.

    As far as the wanting to end my pain, there’s a little more there than could fit on this thread. But in a short explanation, basically I was putting up (again) a mirror and describing what I saw–warts and all. I’m honestly not capable of ending my life, even if it becomes extremely unbearable. I will keep fighting, hard. I was right there at the end for each of my parents, holding their hands (at different times), and I learned that part doesn’t have to be a struggle or painful. I just won’t hasten that for myself. Somebody brought up grieving, and that’s what I was struggling with. I was saying goodbye to all these things and couldn’t handle it well. The thoughts of suicide were… are, an escape. I play it all out in my mind until I reach the end, and beyond. Even the parts about how it might affect others. I do that until I wear myself out and the psychological pain subsides. It’s an imperfect way to cope. It’s really scary as hell to have to face losing control and having to rely on others. There has to be a release. I have also had serious thoughts regarding how this all affects the other people in my life, and how they may give up things to take care of me. That hurts me deeply because I have experienced someone close giving up everything for others, to her own detriment. I’m not saying that there are only extremes as choices, but I do think deeply about others based on my own personal experience. The point is I think about it and that’s as far as it goes. Which is actually a relief as much to my family as it is my psychologist. Hopefully that clarifies what I posted before.

  27. Ann December 4, 2015 at 8:01 am #

    Thanks for your clarifications Christopher. One small thing popped into my head as I read your post. Just as we (those with extreme health issues) do not wish for someone to handle our health without our input, we also do not have the authority to dictate to others how much they should give up in their lives caring for us. Both should be a communication. We can not demand of others same respect we would like in our lives if we are not willing to give it.
    I am happy to hear you plan to stay in this world much longer. I believe you have much to share with it (especially because it is honest and provokes thought). Someone mentioned previously you should consider writing – I second that thought.
    Have a good day:)

    • Jan1 December 5, 2015 at 4:01 pm #

      Ann, I will briefly say that I appreciated reading your insight re trying to control the level of help extended by another. Will admit that I too often try with all of my strength to carry on “business as usual” when my husband knows it isn’t a wise thing and willingly will try to take up some slack. A good reminder to me that it’s just his caring spirit (and not necessarily all about my own push to operate as I’d like).

      Happy Holidays.

  28. Claudine December 4, 2015 at 2:37 pm #

    How great to read Ann’s query about Baclofen, read Betty and Christopher’s considered advice, and then see a successful trial of it all in one blog entry’s comments!