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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409 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:

    Amy
    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.

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