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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417 Comments on I’m an MS Caregiver

  1. Nell says:

    My son is 19 and diagnosed 2 years ago. he cant do any of the things he wants to do, he doesn’t have his license yet due to his symptoms, he only got to go to one year of high school so he has no friends. He is going thru depression something awful. It tears me up to see my child go thru this. What can I do to help him?

  2. Marge Slobodzian says:

    Jackie, if you can get a order for occupational therapy and have your friend evaluated for transfer procedures they could come out to her home after an evaluation to assess her needs and help show you and her how to transfer properly. They can also evaluate if she needs a lift, gait belt, transfer board, side rail or any other equipment that might be needed. Medicare will pay for an evaluation but you need a Doctors order. Hope you can get this approved and help your friend gain more independence.

  3. Diane Judd says:

    I am a 54 year old woman who relocated from Florida (resigning from my job) to Ocean City, NJ to help my elderly mother take care of sister who has MS . My sister is in a wheelchair. I do everything for her. Lately it is getting more and more difficult to help her on and off the commode, wheelchair, bed, etc. Her husband dropped her off at my mother’s house over two years ago and I just want to be able to take better care of her. She gives me money weekly for this. Any suggestions on being able to lift my sister better? I have scoliosis so any help would be appreciated without bringing in any outside help. Thank you.

  4. Amy says:

    Hi, I’m just wondering if anyone has advice or just feels this way. My husband is going on year 4 with progressive MS.He also had a stroke 6 months ago and is only 38. Does anyone else as a caregiver feel lost and stuck. I don’t have the ambition that I used to I just feel numb. With the MS came the cognitive challenges and moodiness and then the stroke which brought more cognitive issues along. Does anyone feel like their partner with MS could be doing more. I feel like a jerk but I don’t understand why he doesn’t fight harder. Also and once again I feel like a jerk saying this but sometimes I feel like he can do things when he wants and then uses the illnesses as an excuse to get out of things. I don;t get it and just wondered if anyone else went through these feelings.

  5. Kathy says:

    you are not alone in this feeling this way my husband has had MS Progressive since our 15th wedding Anni.and we have been married 44yrs.now just celebrated, his moodiness is horrible and I don’t drive so there are many times I feel just plain stuck, and yes i feel that there are days he could do more but when he does I have noticed he hurts more and things are worse between us, because I have pushed him to do something The first and most important you both have to learn to rule it the MS and not let it rule it.I have also learned that if I ask him how are you doing today and he tells me o.k. or just slient you have to sometimes listen to how he says it the tone of voice, I take walks do things with my friends You have to do things that you want to but just make sure he is taken care of my husband is in a wheelchair.and isn;t taking anything for his MS they tried giving him something and it did the opposite instead of helping it put him in the wheelchair.

  6. Darryl says:

    Hi all,
    I am the caregiver for my wife. She has had MS for about 20 years, and now is in the last stages of the disease. My experience started with giving her daily injections of Betaserone, then weekly Avonex, then monthly trips to a clinic 2 hours away for Tysabri. She went from using 1 cane, to 2 canes to a walker and then to a wheelchair. She also had a couple of strokes. Her condition has been rapidly deteriorating since last Christmas, and I retired to be with her.
    She lost the use of her legs last winter and the use of her arms this past summer. Now her upper body is like a wet noodle, and her legs are spasmed and can barely be straightened out. Her cognitive abilities are pretty much not there and she sleeps about 20 hours a day.
    We have homecare girls come in every day for an hour, so I can run out and get groceries and stuff. I also found a travelling dental hygienist to clean her teeth, and our dentist and doctor have made home visits. So she is getting the best care I can provide. I will take care of her the best I can until it is too much. But when is it too much? That I don’t know.

  7. kim says:

    Hi Amy, My husband is 48 and has had MS for about 15 years. I have been with him for the last 6 years and I am 37 with 2 kids. Some days are just harder than others for him. some days he is out in the yard doing his thing and others he doesn’t even get out of bed. I get frustrated, I mean just a year a go he was very energetic and happy we had fun. things are getting harder for him. he just stopped working this year and is dealing with feelings of worthlessness. Think of if this way, the life he once knew is being taking away from him. try to be compassionate and when you feel your self feeling resentful. take some time out. get with a girlfriend and vent it out. it’s ok to feel what ever you feel because the life you knew with him has been taken away from you too. Hi body has to deal with this disease but you heart and mind do too.

  8. Rich says:

    Hi Darryl,
    We’re pretty much in the same boat. I think the toughest thing for me to deal with is the loneliness. You’re smart to have someone come in now and then to help out, and it sounds like you’re doing a great job yourself. I wish I had some incredible words of wisdom for you but I don’t, because like you I struggle with when is enough enough?

    People on the outside just tell me to put her in a nursing home. To them its ez, because the emotional tie of losing your best friend and handing over the reigns of care to someone else isn’t anywhere they’ve been or want to go.

    I always tell myself when I do make that decision, I hope there’s enough of me left to go on without her. You sound like a smart guy so I’m sure you’re keeping yourself in shape physically, I know that helps. I also try to do something out of my comfort zone at least once a week to keep life somewhat exciting. Other than that I’m retired to care for Patti just like you. So it can get monotonous .

    I want to wish you the best my friend and please stay in touch. We all need each other, there’s very few people that walk in our shoes, or for that matter want to (LOL). With the holidays coming I hope all of us stay in touch. If anyone deserves good holidays its care givers and their loved ones.

  9. Darryl says:

    Thank You for your comments Rich.

    I am so sad to say, but Amanda passed away on Tuesday. It was very sudden. Her PSW was here from 10 to 11:30, and then the VON nurse was here for her bi-weekly visit. Everything was good other than a bit of upper chest congestion. I lied down beside her for a little bit before I made her lunch. The phone rang, so I got up to answer it, and I put some laundry in the drier. When I went back into the bedroom, she was gone. I was away from her side for less than 5 minutes. She passed without making a sound and had the most peaceful expression on her face.
    Thank you all, and stay strong,

    • Rich says:

      Hi Daryl
      I’m so sorry to hear about Amanda. But I also feel a sense of relief for you both and a happiness that she passed in her sleep. Amanda was lucky to have you through her last days, I think its so awesome that you were together. You take care and take some time to get to know yourself again, that’s Amandas last gift to you.

      Happy Holidays


  10. Denise Rothschild says:

    Hi, i met my husband with MS and he had it since 2006 we met in 2008 got married in 2011 he told me that it would be hard and he has gotten worst.he been in wheelchair since 2006, i am his care giver but i thought it would take a toll on me.sometimes i feel so stress and depress i just want to leave at night i can`t sleep he calls me at least 50 times a day there`s times where i can`t go places because of his condition i have sacrifice a lot to take good care of him but he want help me to help him take care of himself. he don`t drink water he want eat healthy all he want is fry food and eat lots of junk food and im really concern about his health. i love my husband dearly but he has an harden heart towards himself and me any advice im really at my breaking point

  11. David Heller says:


    I have been married to my wife for almost 5 years. While she has always had MS, it was only about a year ago that I really have started to understand the “gravity” of the situation. I am most worried about finances, as I am not a wealthy man. While I care for her deeply, I don’t think I can handle the financial and emotional strain of being a caregiver. I know it sounds awful, but I can’t live in continual fear and anger for the rest of my life.


    • Rich says:

      Hi DH,
      I know the feeling. It took me a while to realize it to. It can be overwhelming at times. Do you have your wife on social security and Medicare? That can help with the finances.

      The other thing you may want to try is to find a group of caregivers in your area to sit down with and let them know what’s going on. They can help you just by listening to their stories and telling yours.

      You may also want to see if her neurologist has a social worker that they work with. If the SW is any good they can tell you ways that may help. Don’t try and fight this on your own!

      You take care of yourself because your no good to her unless you do. I’ll be thinking of you two when I sit down and watch a football game over thanksgiving. I hope you both feel better and relax together over the holiday

      Best regards,


  12. Gloria32 says:

    Hi everyone!
    I’ve been reading all your comments and I feel relieved that what i’m feeling it’s not an exclusive thing. First of all, english it’s not my first language (i’m from Spain) and i would like to apologize for any grammatical or lexical mistake.
    Here goes my experience: i’m 32yo and my mom is 53yo. She was diagnosed with MS back in 2004, so it’s been 11 years of fighting this stupid disease. At home we are 3, mom, dad and me. When she was first diagnosed i was away in college, and everything sounded like, really far from me, i was not at home (i was only there on weekends, and some i didn’t come home)and could not see my mom struggling whit her life. My dad’s a forest firefighter (i don’t know the right word, sorry) so he has a weird schedule. The first 2/3 years were difficult, because we didn’t understand what was happening to her. Nobody explained to us what to expect, what to do to help her or where to go to find any answer. She had relapses every year, but her doctor wouldn’t change her meds. Finally, in 2008 we decided to change doctors, and he was really surprised with how my mom was: she could not walk alone, her cognitive senses were destroyed, she was on diapers…and in only 4 years!!
    He changed her medication and everything seemed to quieten for a while. In 2009 i came home after finishing my studies and decided to stay at home with her, because my dad could not quit working. I’ve been her primary caregiver all these years, but her situation has worsened the last couple of years: she was on Tysabry and they had to change it because it was dangerous to her, so, 3 months without meds to clean her body, and last May she started a new one (Gilenya or Fingolimod). In those 3 months she stopped walking, talking and paying attention to anything around her. The meds are the only ones they can give her, because she is too bad to try any new one. Last August she had an epileptic crisis, so, new meds for her!! And last May they had to put her a feeding tube because she didn’t want to eat, she has swallowing problems and that made her have a respiratory infection.
    Now i feel like i had enough. I feel i’m the only one taking care of her. My dad goes to work and when he’s home he leaves to work in our village house, he says he needs it to not think about the problems all the time. I had my aunt help (we were paying her) but she also said it was too much, that she couldn’t do it anymore because she was not paying attention to her own life. So i’m alone. I had a breakdown last month. I had to go to a counselor and she adviced me to start thinking in me for a while. I’ve never had a job, can not go out with my friends or even thing about having a relationship, i’m seeing my life pass in front of me, and i feel soooo guilty for thinking this that sometimes i spend the day crying. Mom is now in a day care facility. She leaves at 11 in the mornings and comes back at 8.30 in the evenings. The weekends she is at home. But it’s even worse! Because i feel like i’m in jail, with a tight schedule.
    But what is worse is thta she is not my mom anymore, she can’t talk, can’t walk, can’t do anything for her. She sometimes is in her world and don’t even knows that i’m there talking to her. It’s me to help her out of the bed in the mornings, to wash her, feed her, dress her, give her her meds…and at night the same. I feel enough is enough…I’ve been talking to my dad about looking for a nursing home, but he is really reluctant about it, he feels like we are abandoning her…but i can not stay like this for more time, i need to start living my own life!! i’m sooo sorry for my mom, she was a really active person, my best friend, and seen her loosing her battle day after day is making me mad.
    Do you think i’m overreacting? Are nursing homes that bad???
    Thanks everyone for been there, i will have you all in my prayers.G

    • Rich says:

      Hi Gloria
      You’re an amazing daughter and an amazing person. Youre moms decline has been fast. It sounds like your dad has to come to the realization that you have to move on and your mom needs more help than either of you can give her anymore.

      I’m in the same boat and its starting to take me down with her. Like you describe I feel like I’m left alone to take care of my wife. I asked her family years ago for help but they couldnt do it. The way they deal with it is to tell me she looks great! Those words go right through me and each time I hear them a little voice in my head says ” They just let themselves off the hook” I use to try and explain to them how sick she was and the care she needs, but I eventually realized they were hearing what they wanted to hear. Its funny I wrote them all a letter about 15 years ago asking for their help; even if they’d just occasionally would call Patti and ask how shes doing. I never got a response. It did come in handy though; when my daughter was older and couldn’t understand the frustration I had with my extended family I pulled out the letter and showed her what I sent when she was little. She now knows the truth behind the phony smiles and gee your mom looks great.

      My daughter Pam is close to your age she’s 27. I’ve done the opposite of what you guys have done., I’ve kept Pam going through school and eventually left my business to care of my wife Patti. I told myself that I didn’t want MS to destroy 2 lives (Patti and Pam), little did I know that it would get 2 lives either way. Instead of Pam its mine. I’ve become so isolated that I feel socially handicapped. I take care of Patti so much that I get frustrated with the rest of the world. There are so many times that I find myself saying “I hate my life” that it scares me. Like you and your dad I have to find a way to get the courage to put Patti in a place where they can give her what I no longer can. Then and only then do I stand a chance of being a dad to my daughter again. By reading your letter I realized that no matter how the caregiving is done MS is going to take its toll on a family.

      My heart goes out to you and I hope you find the strength to show your dad what you wrote, because its beautiful and he has a great daughter. I hope the two of you will find the strength help yourselves and your mom by placing her in a nursing home. I want to thank you for writing this because you helped me see that I’m not as alone as I think.

      Were all in this together,


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