If you’ve ever flown, you’ve probably heard a cabin attendant do the pre-flight commentary and say,

“in the event of rapid cabin depressurization, oxygen masks will descend from the panel above your head”.

Then you’re instructed to put on your own oxygen mask first before assisting your fellow passengers.

Hearing that simple directive always gives me a guilt twinge — I’m a caregiver at heart — even though I understand the reasoning behind it. If I pass out from lack of oxygen, I’ll not be able to care for my fellow passenger.

My wife has Multiple Sclerosis and I know first hand that caring for an MS patient can frequently cause “rapid cabin depressurization”. Grabbing my own oxygen mask first still gives me a twinge of guilt. But I believe the comparison is valid; an MS Caregiver must first don his or her own mask before assisting their fellow passenger. This is the only way to consistently make it through the continuous series of “depressurizations” one experiences when caring for an MS patient.

MS is a difficult disease to experience.  Providing care for an MS patient is stressful and it’s important that you care for yourself, too.

My goal for this blog is that it become a helpful resource for other MS Caregivers.  I hope you can use what I share to improve your own life.  And in making the caregiving lifestyle easier for you, I believe it will be easier for you to be more helpful to the one for whom you care.

I think one of the best places to start reading this blog is the article, Finding Caregiver Support

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398 Comments on I’m an MS Caregiver

  1. Ann says:

    I need some help! My husband was diagnosed with MS 4 years ago. I keep questioning the cognitive impact and changes in his behavior. We are arguing a lot more, 1 or 2 times a day. I don’t want to argue in front of the children, but he interrupts me, won’t listen and try to understand my position. He states that I require too many details when he barely listens to anything. It’s as if he loses his patience, doesn’t want to hear anymore and cuts me off or interrupts me or walks away. He acts frustrated or annoyed. I need his help with the children and I feel as if I can’t count on him and I need to do things myself to make sure they get done. He is forgetful; however I used to blame that on his ADHD but it’s gotten worse. Then he states that it’s me and that I require too many details. I am struggling with his symptoms and their relativity to ADHD or MS and I continue to seek the answer. I just want to know for sure. My patience is wearing thin because my feelings are hurt constantly because of his reactions to our arguments. He doesn’t make sense yet he won’t admit or isn’t aware that he doesn’t make sense. He can also be hurtful one minute and 2 hours later want to hold my hand like nothing happened. Very discouraging and concerning. I just want to know for sure it is the disease causing the issues.

  2. Patty says:

    I am so happy I found this web site!!! Me and my husband have married for 25 great yrs. We found out he had M.S. About 17 years ago, and the last four years have been very hard . It has now turned to-progressive M.S. ! He has become very mean, and says very hurtful things, I am not even sure if he knows he said them, god it hurts … I try to take care of him but he gets mad. I never know what he wants from me, so I cook and clean and work full time and pray he’s ok while I am away ! He will not drive anymore so I should be happy about that . I have kids 21 and 19 , they miss there dad as much as I miss the man I married !! I am soooo tired of crying. I would be lost if it were not for some very great friends ! Thanks for letting me vent .

  3. Linda says:

    Dear Patty,

    3 years ago I could have written the same thing. I probably did. I wish I could reach through cyberland and give you a hug. Welcome to this little group of people, where most of us know exactly what you’re going through.

    hugs, Linda

  4. Pam from Idaho says:

    Ann: Just wanted to let you know that you have found a great site to vent and to get some ideas. My husband was diagnosed with MS 12 yrs ago. We have now been together for 30 years. In the last 2 yrs – his cognitive issues have gotten a lot worse (just like what you have described). LOTS of forgetfulness and short term memory loss, very argumentative, refuses to admit that he has any issues — then turns right around and expects the words “oh well, I must have forgotten” – to be acceptable. Not sure if you need to “blame” the ADHD or the MS. The cognitive issues are still there no matter the reason. You may have to start working on how you react to it. Not sure you will ever get him to see that he has cognitive issues. If you look at the reason he has the cognitive & personality issues —- traumatic injury to his brain — maybe that will help you. I also get very frustrated and have found that lately – I have been emotionally distancing my self. Think it is a survival thing. Mentally and physically – you are thinking for 2 and doing for 2 (cooking, cleaning, shopping, paying the bills, bringing in the money, taking care of the children….). I have NEVER met anyone that has mental issues admit that they have them and understand why. In a way – it is like trying to reason with someone that has dementia, is drunk, on drugs and a brain injury…—- they “don’t get it” anymore. They may understand that something isn’t right – they generally won’t see that it is them. Is always easier to blame others. Which is probably their way of dealing with it.

  5. Pam from Idaho says:

    Patty: Glad you found this site. Are you going this alone? Does your husband have any family members that can help you out — even if it is for you to take a day or 2 for yourself? It is not selfish to want some time for yourself. He truly is a different person than the one you married. Maybe try to emotionally put yourself into the “caregiver” mode during the times when it is most difficult. If you were around a stranger with a mental handicap that acted the way your husband does — how would you react differently? Ask yourself how you would deal with it – if he had been in a vehicle accident and was changed permanently due to a head injury? I had someone mention to me once that we need to grieve for the loss of our spouse that we once knew and then start a new chapter in our life – knowing we will never get that person back. MS truly affects all members of the family – not just the one that has the diagnosis. Please take care of yourself.

  6. Marge Slobodzian says:

    My husband has become even more selfish and self centered since his diagnosis 2 years ago. We fight a lot also. It is always my fault when somrthing isn’t right. I try to tell him how he treats me then he says oh so now it is all his fault. He also doesn’t want to give me details and expects me to read his mind. I have thought about it and realize that he really has always been selfish but has become more so now. I am not allowed to make decisions on my own and when I do according to him I make the wrong ones. I pray a lot and I cry a lot and try to remember why I married him and that I still love him. I have also made plans to get away on my own and will be going to Hawaii in 2 weeks. I have a grown daughter who is able to be available to keep an eye on him while I am gone. Make sure you get time away alone and get couseling if you are depressed.

  7. Charley says:

    Hang in there = it comes with the disease.

  8. Linda says:

    Dear Ann, I’ve been knocking myself out with this same question concerning my husband. You can find studies that say MS can affect people this way, others down play it. I think, perhaps, a scan will show where the lesions are and perhaps they could say that this would affect his behavior, but either way, does it really matter? It doesn’t change the situation. I don’t have any answers for you other than I know from experience what you’re talking about. I’m going to say the “C” word… counselling. If he won’t, you might need it just to help you deal with the situation. There’s no magic pill to make your life easier. :(

    You are not alone,


  9. Shaun mounce says:

    I certainly know the feeling. I have been with my wife for 9 years and she has been diagnosed for more than half of it. There are a lot of times I feel completely helpless. Sometimes I feel like she has just given up. I get grief from family because they see it too. Nothing I say seems to matter. I love her unconditionally and will always be there for her but I never know what that next day is going to be like.

  10. Virginia says:

    I Am so happy I found this site. At least I know there are others in the same boat. I pray every day for all of us.

  11. Kathy says:

    I know how you feel my husband were told on our 15th wedding annivsary we cried a lot and then we looked at each other said almost at the same time Are going to let the MS rule us or are going to rule it,we have been married43yrs it is very diffcult even more so now as the MS is getting worse, he finally decided to go to counseling which helps some and I also go and have been going for sometime it helps when you can talk to someone else,and sometimes they can give you a different idea on how to handel it his moods and yelling at you I still get that where I am wrong and he is right,when I know he is like that I either go on the computer go for a walk or just read, hope this helps some.

  12. Michelle says:

    Dear Ann,
    I was recently diagnosed with MS and my memory issues were the main reason why I went to a neurologist to be tested before I was diagnosed. Perhaps your husband should take a neuropsychology exam. It’s basically a 4-6 hour test that measures all sorts of cognitive functions. I just took one a few weeks ago and it is really amazing to see which areas of your brain are being affected my MS, intellectually and emotionally. I found out that I tend to lose details if given too much information too quickly. It may help your husband to see how his brain is being affected. I was worse than I thought in some areas and not as bad as I thought in others. If you choose to go to a counselor, I was advised to look for one who deals with neurological issues, not only, “talk therapy”. It seems for us MSers, too much talking may make us feel worse. I’m sorry you are going through this.

  13. Lynn says:

    Thank you for all the recent posts — this ongoing conversation helps me a lot. I think you are right, Pam, when you say that individuals with mental challenges often don’t want to admit it.

    I was invited to go to a caregivers’ support group (caregivers broadly defined) and at first I felt that my situation was different from those of other people because they were caring for their elderly parents or grandparents with dementia. But, I really saw some themes across all our situations — people with cognitive challenges tend to feel scared, powerless, and embarrassed. They don’t want to have the cognitive challenges, and it’s probably the case that their mental challenges keep them from understanding sufficiently what is occurring. I am going to keep going to the support group, even if no one else has a loved one with MS, because some of the issues are similar (e.g., making decisions about medical insurance, living arrangements, loss of freedom for the caregiver).

    My sister is going to have a neuropsych assessment at the beginning of June. I am interested in the results but wonder how she will feel about the results. They may increase her depression, or they may help her to understand that she really is having problems with memory and problem-solving.

  14. Bryan says:

    Same at my house. Really gets tough some days.

  15. Jason Cornish says:


    I have been wondering for a while when I will find a pretty new post for something that I deal with daily. I am a care giver to my wife of 11 years who has suffered with m.s for the whole term of our marriage. I am 33 and she is 37, she has secondary progressive m.s but still holds down a full time job. We have 2 children and I am a stay at home dad (she has always earned more money than me!)
    We have been slowly moving apart for the last 3 years as her condition has worsened to the point we are at now. I do love my wife but I am not sure I am in love with her anymore, due to changes in her condition she loses concentration very quickly, does not listen to me when I talk about all the rubbish stuff couples talk about and has serious fatigue meaning she is in bed most evenings by 7pm and I know she works very hard but….
    I get fed up of family and friends telling me I am so lucky and what do I have to moan about but they do not realise that we no longer have an intimate relationship including sex because of the changes in her condition including incontinence and tremors. I hope I can feed from some of you guys and help in return. All the best Jason

  16. Patty says:

    Thanks so much Pam and Linda , sorry it took so long to reply ! I had surgery on my knee may 8 th ! So I have been off work , I have learned a lot these pass few weeks with spending a lot of time together. I am truly blessed to have found this web site …. I have learned just to walk away when he starts yelling about nothing as long as he’s safe! I try to get him to ask when he needs help but I have figured out its makes him feel better if I don’t ask and just do it for him . And yes to your other questions , my husband has pushed most of his family away ! But I have the support of my family thank god …. I will check back more often thanks .

  17. sarala says:

    we may be in a similar situation although my husband is the one who has MS. we are young and have kids and he is either primary or secondary progressive. the loss of dreams is something i grieve everyday and it affects my relationship with him. MANY MANY emotions come up. I am in this for the long haul (and i say this even though i feel like i am in a worse state of mind than i have ever been in) and feel there is a lot of work that we both need to do. All this while his condition worsens. And no one around us understands. Even family and friends, although helpful, still don’t quite get it. Happy to connect by e-mail if you’d like.

  18. Mike says:

    Hey, Jason:

    I wear your shoes. 21 years now. My wife lives full time in an assisted living facility and our kids just left for college. Prog, 2. I avoid moaning to friends and family because folks basically lack empathy unless they’ve walked in your shoes. For 21 years folks always ask how my wife is, but no one ever checks in on me unless I pay them (shrink).

    I live in our house with my 18 year old daughter soon headed to college. My wife lives 20 minutes away.

    A few years ago I met a female friend who has empathy for my situation and spends time with me here and there. She’s a lifesaver because loneliness is my Achilles heal.

    I am surprised your wife has Prog 2 and can still work. Pretty unusual, I would imagine.

    It’s perhaps the toughest job in the world…Caregiving.

    You’re not alone. Be strong.


  19. Ron says:

    Man 52. Wife 46. Married for 28 years. Known each other for 29. She’s had ms for 30 + years. I could vent or tell my story for a long time but no one else could get a post in. I don’t want to say how I feel. I thought unconditional at 23 when marrying too. I’m 52, does anyone want to hear what I’ve been thru?
    I’m broke now. It’s a looooong story, hmm.

  20. Sheila says:


    I’m so sorry you have to go through this. My husband was diagnosed 4 years ago and our arguing has increased exponentially since he’s be diagnosed. When I was reading your message, it felt like I was reading about my own life. Are you in therapy for yourself? I have a therapist, he has a therapist and we’re also in couples therapy….I find that therapy really helps because my therapist can help me identify the truth from reality. Sometimes, I internalize the criticisms that my husband makes about me and I get really angry that he doesn’t see how hurtful, mean and short he’s being. Having a therapist gives me a place to voice my concerns in a safe space and gives me tips so that I know how to effectively address the arguments as they arise. It’s certainly not easy but it has helped me with my sanity…a little bit.

    I’m also trying really hard to lean on my faith, but I’ll be honest and say that I’m not upset with God for dealing the cards to me. I know my husband is the one with MS, but the way that he treats me makes it soooo hard. What’s worse is that he thinks that I’m the one with the problem and he’s justified! Sorry back to you Ann! :) I think this message board is a great place to start. Also, I find that helping other people is very theraputic for all parties involved…so if you see someone else on this message board who is in need of encouragement, drop them a line and provide some insight….helping other people has a way of making you feel a little better because the focus is not on you.

    I hope this helps. I’m praying for you sister.


  21. Rhoda Longmire says:

    I have the same problem. My husband is only a year into his diagnosis and it has been a struggle to say the least. The side affects of the medication keeps him up all night or all hours of the night and keeps his mind racing. This is hard for me as I work full time and I get little to no sleep. We have 3 children and one is only 2. He is very argumentative and wants to discuss everything at inopportune times. This is not the easy going man I married. I feel like I’m living with a meth addict!

  22. Jim says:

    Sarala I agree. No one gets it. Shocked at how no one thinks to call and see how my wife is doing. Friends? Really? You are not a friend if you are so busy promoting how wonderful your life is on FB and not taking the time for a call. One of the biggest fears of my wife is that everyone will just forget her because its too much trouble to keep a relationship going. Do I sound angry? I am.

  23. Jim says:

    One more thing Sarala. Your comment on the loss of dreams being so hard. Once again I agree. My wife’s dreams are gone. My dreams and life goals are mostly lost as I work 4 jobs to keep things going. Dreams for a wonderful retirement together. Gone. Now my daughter has been diagnosed with MS. Dreams for grandchildren? MS very likely ruined that too.

  24. Jason says:

    Hi Sarala,

    I have had to make my own dreams come true with my children and in a very selfish way have had to say I will be spending time away from you to allow me to lead some sort of normal life. I have started going away for weekends with the kids to allow some normal activities to take place. with carers in place. I cannot allow my childrens lives to be put on hold whilst we deal with the situation we are in. Ultimately all of our marriages are on the edge of survival unless we are a little selfish. I personally would love to meet someone who I can share experiences and dreams with whilst still being there for my wife, to love, care for and support her with the knowledge that I have an avenue to escape to when I need to. Does anyone think this is wrong?

  25. Lou says:

    Man 57, Wife 53, Married 32yrs. diagnosed with MS 22yrs ago but has had it all of our married life. I quit long time ago so many times, so I stopped quitting. Yes this is unconditional LOVE. It’s not fair, but FAIR is a place (a place for entertainment) not a state of mind. All of us here are special people. Very few people can do and survive what we do. Do whatever it takes to hang in there. Your survival mode needs to kick in (to keep you strong) then you can care for your love one like no one else.
    If you need company(a real person) to have mental sanity then get it. Becareful though there are kooks out there. But find someone. You can trust and get some peace. The love ones we care for need us.
    So in the famous words of…(I don’t know who) HANG IN THERE!!

  26. Marge Slobodzian says:

    Sara and Jim,
    I too feel that my dreams have been smashed but I am now trying to make new and different dreams for myself and Husband who has PPMS. I plan on taking a couple of trips by myself and a couple with my husband. He watches TV a lot so each day I try to sit and watch his favorite shows or sports with him. This seems to help with some of the arguments we were having. I think he was feeling lonely and I didn’t know how to fill the void but just giving him my time seems to help.

  27. Carol says:

    I am a in my mid 50s and my husband, who has PPMS is nearing 60. He was diagnosed 15 years ago, and is now quite physically limited and beginning to show more serious signs of cognitive issues. My kids, who are young adults and have always been very supportive, are starting to move on with their lives (a good thing), but it is leaving me feeling more alone and isolated. I have very few social contacts, due to the time that I spend between work and caregiving, and my kids, who use to be my main travel companions for much needed vacation respites are now a venturing out with friends (again, a good thing) and mom is no longer their choice of travel companion (understandably so). The few social contacts I have travel with their spouses and so they are not options for any serious get-away plans. I am an active person with an adventurous travel nature and not being able to get away to reenergize is becoming a real problem in terms of being able to keep up my spirits and energy so I can continue being a caregiver. While this blog is very helpful in letting me know I’m not alone out there, I am looking for suggestions on how to find in-person contacts and travel companions who can understand my circumstances and also need a respite companion. Are there any resources or connections that anyone can suggest?

  28. Patty says:

    jason, its not selfish of you! I do the same thing but my kids are in there 20’s .So I seam to spend time with my girl friends, with out them i would go crazy! my husband has pushed most of his friends away. If people do not understand M.S. they will never understand why he is always so mean, but the person before M.S. he was the most caring man around . Its just so sad ! I will stay with him as hard as it is, i just learn to walk away and not take his out burst personal . kinds like being room mates . :(

  29. Lou says:

    Hey, Carol,
    I belong to a organization called “Share the Care” in Central Florida. This organization is. specific for the caregiver. I met a man in this group and he was adamant about me getting time for me. I’ve been married 32yrs and love my wife like nothing else (except God). He died suddenly last July i was reminiscing just the othe night. If you lave and care for your spouse, take care of y i yourself. I know its hard but you must.
    Also know that I struggle with this too.

  30. Marge Slobodzian says:

    I live in Overland Park, KS so my be you can find some people in your area who would like to travel. I would certainly be interested in meeting someone interested in traveling or just getting together for Breakfast or lunch.

  31. Jim says:

    Carol……….I understand. I’m also an adventurous type that is now limited with a spouse who simply cannot travel much. Setting up a group of MS caregivers who are looking for travel partners is not a bad idea. I’m actually leaving for a solo trip to Egypt on Friday. So sad not to be including my wife but she just can’t so it. I’ve negotiated two solo trips per year with her in order to keep my sanity. I do so many things by myself……..the person I married died several years ago.

  32. Linda says:

    Ron, We’re here. What have you been through?


  33. Mike - Dallas says:

    Hey Everyone…Would you begin adding your city of residence beside your name in the required fields?

  34. Martin says:

    I understand the need you are talking about. I have often thought the same way about the need for companionship with a “healthy” person. However, I have come to the realization that this is dangerous. Even with the best of intentions to fill a void, you will not be able to control what the flesh naturally wants. Nor can you expect limitations to work for the “other” person. Being lonely in the way we are is so tough, but the complications you would encounter in doing otherwise would not be worth it.

  35. Carol says:

    Jim …. Thanks for your response. I have considered traveling alone as an option, but it is a little more difficult for a woman to do this, and somehow, traveling alone seems to defeat one of the main reasons for getting away for me, which in part is to get away from some of the isolation and loneliness I feel at home. Back in our past lives, my husband and I went to Egypt and it was a wonderful trip, I know you’ll love it, although you probably need to be a little more careful now than you did back then. I wish there were places to post pictures on this site, I would get such a kick out a seeing again some of the places you will be visiting. Have a wonderful trip!! And be especially adventurous for those of us who just can’t right now. As for the future of travel, maybe there are others too who would like to travel and need companions to travel with. If there is such a group, please share the information on this site, and if not, maybe it’s something that needs to be established. I’m it the DC area and would like to hear from anyone else who might have suggestions.

  36. Carol says:

    Hi Lou, thanks for your words of encouragement. I also have been married for 32 years and we are still best friends, but the change that has taken place over recent years has worn me down, heart and soul. I miss the man I married and there are times when the self absorption that has consumed him is almost more than I can bear. I try to take care of myself, but as you are so well aware of, we all struggle with this, some days are better than others, but all are difficult. Thanks again for your encouraging words.

  37. Marge Slobodzian says:

    Jim, I also take trips a couple of times a year without my husband because he also doesn’t want to travel much. He refuses to fly and since I am the only one driving I won’t drive more than 4-5 hours per day. All care givers need to take time for theirselves doing what they enjoy. At 62 we had planned on retiring and traveling but now that the time has come I told my husband that even though he does want to travel he can not tell me I can’t travel because it was my dream and I wouldn’t have anything to look forward to.

  38. Kathleen says:

    My husband has PPMS and is homebound. I am his full time caregiver. He will not allow anyone to come in so I can get away for a few days. I have been doing this since 2007. I read all the comments and know so well what it is like to have people not understand or care to understand MS. I keep active, have lots of friends and get out as much as I can. I have a male friend who I care deeply for but feel guilty admitting it to myself. I never thought I would ever consider a new love but now it is facing me and I am not sure how I will handle.

  39. jeanne says:

    Wow! Didn’t realize how much I needed a support group. This totally describes my life and it seems to be getting worse.


  40. jeanne says:

    my husband does not have friends because he has never been that social. our family is our social net (daughter, son, myself, and his mom primarily). my daughter and I are getting our master of nursing degree so that is my time to get away. also, I play tennis regularly and this can be helpful, although my husband seems to HAVE to go EVERYWHERE I go! And, yes, he can be caring, but always is complaining the majority of the time we are together. I have to listen but it gets so old.

  41. Mary says:

    I came across this website 3 years ago, and found the information so helpful. Well I am back now, in the same sad shape as before – or worse. My husband and I have been married for over 30 years. He has had MS for 23 years. Secondary Progressive now. He is no longer walking, but has a chair with power wheels, a car with hand controls and electric ramp, and a wife who makes a decent salary and pays all of the bills. He is seen by others (his casual friends) as a great guy – so motivating and friendly and outgoing. But in private he is angry, depressed, resentful and has many of the characteristics I see in published literature about abusive personalities. He has angry outbursts, he is demanding, and yells at me every single day. I believe his meds need adjusting, but cannot do anything about it because he will not allow me to go to the Dr with him. During a recent hospital stay, then subsequent rehab stay (5 weeks total) he must have thrown me out of his room (Get the F*** out of my room!) at least 5 times. He pushes me, rams me with his wheelchair, calls me names. No apology. I am no longer sleeping in our room and have moved into the office of our tiny condo. I am away often for my job, and perhaps that is the only reason we are still together. Even our adult children see how badly he treats me. I am at the end of my rope, and sick with anguish. I loved the man I married, but he has changed so much.

  42. Jill says:

    Ann – I just found this website and when I did, I cried. I am so not alone! Everything that you wrote in your May 2014 post is my life to a tee! I cannot say or do anything correctly. He argues with everything I say and I cannot do a anything right, but he makes no sense to me at all. Yet to him, I am the crazy one! He stops talking to me for days on end because “I just don’t get it.” How exactly am I supposed to get it when I do not have the disease? I try to be sympathetic – I swear I do. My husband, too, can be so hurtful one day, but can be so kind and can’t live without me the next day. I am supposed to just forget everything he just said to me in his hurtful tone and move on. If I said I said just one-tenth of what is on my mind, he would be devasted. I know in my head and my heart that it’s this horrible disease, but I just want my husband back and a normal life. I know that it’s impossible now. One day at a time, I suppose. Thank you all for making me realize that I’m not the crazy one! Jill

  43. Rich says:

    Hello All,
    This site is awesome, but I wish it had a chat room or some way for us to contact each other. The biggest problem I face with MS is the isolation. Everywhere I go I feel like I have to take my wife in the wheel chair. That wouldnt be that bad if she could communicate with myself and others, but the cognitive part of MS has left her in very bad shape mentally too. It mimics Alzhiemers. My wife has had this disease since 1983 and its been secondary progressive for the past 15 yrs or so.

    I know this is tearing me apart but I’m stuck. I got close to putting her in a nursing home a couple of months ago, but I couldn’t pull the trigger.

    This lady saved my life and now I feel its my duty to keep helping her. When we met, I was 23, and my first wife had just been killed on a motorcycle with a good friend of mine, also killed and driving. That coupled with the fact that I’m a vietnam vet from a broken home I was hitting rock bottom and didn’t want to live anymore. Patti was the only person that got through to me and saved me from ending it all. I always told her I was amazed that she was beautiful from her skin right down to the bottom of her sole. She still has that positive attitude even though shes not the same person. She tries to help me every day, but doesn’t realize that its making it much harder for me because she gets up from the couch with her walker and will fall. I let her do the laundry even though I find it all over the house. I know I have to make her feel like shes contributing, so I give her a few dollars for her pocketbook knowing that it will most likely turn up missing in a few days. She rarely gets frustrated but she does call out my name all the time. Sometimes I feel like Johnson on the 3 stooges. Johnson! Johnson! Johnson! You gotta keep your sense of humor

    I’ve tried having people come in to take care of her, but they dont know what to do with her. they try and play games but she cant. Shes just happy watching tv all day. Thats not the woman I married yet I still love her like I did. I’ve thought of dating, but I cant do that either because I feel as though the trust we have for each other will be broken by me. I dont know what to do other than write and hope I find a way out of this mess. I’m not particularly religious so please don’t ask me to have faith. I respect everyone’s right to believe what they want so please respect mine.

    I know all of you guys are going thru similar things but in different ways. I hope we all can figure out a way to solve this hidden killer. For the caregivers that go thru this every day you have my ultimate admiration and the love that you may have lost from your spouses. I just keep hoping that someday people will realize what this insane disease does to wonderful families like all of ours.

  44. Sandro says:

    Brother I feel your pain I don’t believe my wife is in the same state as yours but she slowly changes more an more it kills me inside I frequently go for drives alone so she won’t see me cry as I write this I’m shedding a tear. She’s the most beautiful caring sweetest girl I’ve met she always puts everyone else in front of herself in that sense she’s never changed. I’m 39 goodlooking an kind man I know if I went looking I could find a women with ease the problem is that I want no other I want her my dreams of a perfect life kids white picket fence was with her no one else. No matter how many days go by I look at her an that sweet sexy girl I feel in love with is there she owns my heart so if I die alone at least Ill know I never gave up on her as I know she would’ve never had turned away from me. Brother I feel your pain it’s soo hard it’s why I’m trying to find people going through the same things we are at least we can relate share a story laugh an make new friends just remember were never alone.

  45. Jackie says:

    Ok so, i take care of a friend with MS. We are discussing ways to independently get out of bed onto her electric wheelchair. Are there any suggestions? I really need some help…

    • Debbie says:

      Have you tried a Hoyer Lift? I don’t know if they are for independent use now. But you have a place to start any way. Good luck and what a friend you are to be doing this for a friend not a husband or wife, mother or father, sister or brother.

  46. Carol says:

    Sharing in your sense of isolation. Days are spent working, and evenings and weekends care giving. As my husband’s social skills, physical abilities and cognition decline, and his care needs increase, we spend more and more time confined to the house and we lose greater contact with the outside world. He is wheelchair bound and needs assistance with all his personal care and transferring. It is physically and emotionally exhausting going out with him with all that this entails. We have limited help during the days while I’m at work and besides this long term care giver, I am virtually the only other one he’ll let help him with personal care. While we had a very intimate relationship when his health allowed, it no longer does and I have found that as I help him more with caring for his personal needs and hygiene, I no longer feel the physical attraction I once did because my role has just progressed into such a different place. I still feel very committed to him and care for him greatly, but I get lonely and feel the isolation that seems to be a recurring theme among many of the other spouses on this site. While sharing helps, I wish there was more I could do to combat the loneliness.

    If anyone has success with figuring this out, please share your ideas. Thanks.

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