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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342 Comments on I’m an MS Caregiver

  1. Donna says:

    It is so important for each of us (caregivers) to have a safe place to voice how we are feeling. It helps so much to know we are not the only one feeling these emotions. Loneliness is one of the hardest things to handle. This is a tough time of year for all of us.

  2. Kathy says:

    I know how hard it is my husband has MS and this time of the year is very hard on him both of his parents are gone and both of mine are gone now, And I really like Christmas not for the gifts but the true meaning of Christmas .

  3. Jody Shimpach says:

    My husband of 39 years finally ended up in a nursing home last year. He has PPMS and it finally got to the point that he needed more care than could be provided at home. It took a while to adjust but we both know it was the only choice. I was sooooo angry or so many years, exhausted and frustrated being the sole caregiver. Thank God things have gotten better. All of you who are doing this with limited help, please please take care of yourselves. Mty stress contributed to a heart condition and I had open heart surgery and died on the table. Your loved ones need you, see a therapist, talk to a friend, pray, live yourself too, I did all the wrong things thinking I was doing the best for us, now I do the best for us and try to create a life where we live apart, thankful for life and love.

  4. Lou says:

    I haven’t written in quite some time, because it’s hard. As I have said before I love my precious wife so much. We’ve been married for 31 years, wonderful years. However lately it’s become a real drain with no relief in sight. My wife is only 52 yrs old. She has all of her mental facilities, and this wicked disease keeps taking more and more from her. She now can hardly do anything for herself. I know that it pains her not to be able to do things. I have become a fultime caregiver, and fultime worker and dad and grandpa. Where does it end. I’m up at least three to four times a night to adjust her because she can do nothing for herself. We can get no assistance because of my income. I’ve been told that I should look at a divorce to see if that would give some assistance. She does not like that idea, I’m not going anywhere but I need the help. If she did not have her mental facilities yes I would put her in a home to get the attention that she needs and deserves. I’m just getting tired and know that a year from now I will be completely worn out. As of this date Dec 14,2013 I’ve had a total of 7 days away from her. 4 of the 7 were for business. 3 were me being desperate and had to get away. I’ve got to do something.

    Lou

  5. Robin says:

    My wife was diagnosed in 2001. She went from relapsing remitting to secondary progressive in 3 years. At the time her 3 children, my step children, were 13, 12 and 11. I raised them without any help from their mom.
    She never did anything to try to make herself feel better. She refused to exercise, eat better and maintain some kind of social life.
    I have at times worked three jobs to maintain the household and feel very used at times.
    I feel like she didn’t care about herself, her children, or our relationship to try and do something that might have staved off mobility issues. She is not in a wc but does use a walker.
    The MS never bothered me, in fact I know that I know much more about it than she does. It is her attitude that I find harder and harder to live with.

  6. Charley says:

    Your caregiving activities are very similar to mine. I retired early to take care of her. I do have 20hrs. Of caregivers per week which gives me (and my wife) a break. Hang in there.

  7. Joann says:

    My husband was diagnosed in 1983. One year to the date of our wedding anniversary. I was only 22 years old and he was 28. The first 10 years were relapsing remitting. He then went to progressive. He went from a cane to a walker now in a wheel chair. I am the only caregiver so everything is on my shoulders. I always put the disease in the back of my mind for 31 years.
    Trying to pretend it was not really happening. The disease is progressing at faster rate and I am scared. I gave up having children because his father had M.S.. He did not want to give it to his children. He did ask me to leave but I refused. I have no family close by and no help. My whole life has been working 2 jobs and taking care of him. I guess I am having a pity party for myself today. I do not know why at his juncture of my life why I am feeling this way. I never complained or asked for help. My whole life revolved around him and his disease.
    Now I feel like I want to go out and enjoy life. I love my husband very much and hate this disease.

  8. Lynn says:

    This website is exactly what I needed. My sister who has had MS for the 12 years just moved to live by me as she cannot care entirely for herself. Her husband divorced her about a month ago. She has her own apartment in the same town as me, but my husband and I provide transportation, cook for her, and provide some medical care. I don’t mind helping her with things for a few hours each day — I am not a full-time caregiver as many of you are here. I need to realize that for her, everything is in the moment — she doesn’t see that I spend lots of time helping her with things each day. I also need to realize that she has social skills deficits now related to the MS. She can be very demanding, asking me, for example, why I didn’t do a particular thing for her when she didn’t even ask me to do it. She thinks perhaps that she asked me when she didn’t. For this new year, I have planned to see a social worker to help me cope with these changes in my life. I am also looking into an MS support group for caregivers. I work full time and have a teenage son that I want to spend time with too. I think it’s hard too because my sister was abusive to me when we were children; she’s one year older than me. When we were children and teenagers, we hated each other. For the next 25 years, we were estranged from one another, talking to each other 1-2 times/year. Now I am her primary caregiver, with no other family members willing to help, and all living at least 800 miles away in other states. So, this is a big change for me. The other thing that I am finding hard is that my sister doesn’t realize that she has serious cognitive deficits. She realizes that she has memory issues but doesn’t see that she has poor comprehension, poor judgment and decision-making, and poor abstract thinking skills. She is trying to date people now that she’s moved here (she’s 46) and is distressed because they are all only 1 date. No one calls again after meeting her. So, this is a challenge for us too. She sees herself as only impaired in terms of mobility. She doesn’t realize how much she has lost in terms of cognitive skills. I’m not saying it’s not possible for her to meet someone for a romantic relationship but she presents herself to others in terms of her previous cognitive skills (e.g., college graduate, attended law school). So, I’d love to hear from anyone who has gone through a similar situation of becoming a caregiver for a family member who you hardly know and don’t have much affection for, and/or people who have helped an individual with MS come to develop insight into their disability. Thanks!!

  9. Charley says:

    Mine is a similar story. The main difference is that I was able to take early retirement to take care of my wife. She is wheelchair bound and can only use her left hand.

  10. Pam from Idaho says:

    Lynn, I am so glad that you were able to find this site. My husband was diagnosed with MS in 2001. Up until about 2 years ago – he was doing fairly well cognitively. That is not the case anymore. He now not only has ALOT of memory issues – he also does not realize that he has some major problems with reasoning, executive decision making, personality changes…..I love him dearly and am in this for the long haul. I am mostly adding my comment so that you would know others are dealing with these issues and will be able to understand how you are feeling. His comments don’t make much sense anymore. He has to much free time on his hands during the day at home while I run a business I started 2 years ago (allows me a little bit more flexibility to get to his appointments and deal with daily issues–like 5-10 phone calls a day). He now rummages thru things in boxes and then sets them out (more dust collectors – and he doesn’t dust). He will try to do laundry and leave the clothes in the dryer to wrinkle or hangs them up wrinkled–then does not seem to comprehend why I wish he wouldn’t do the laundry…What helps me is that I learned as much about MS as I possibly could and then became a group leader for a local MS Self-Help group. This helps me stay a little more understanding about what is going on. I have determined that I “need to pick my battles” and for the most part – that works. His driving is not that great and scares me — so, I have decided not to ride with him. We either take 2 vehicles or I drive. I don’t expect him to cook – so, I do a lot of week-end cooking and freeze things to be re-heated after I get home…Remember – being her caregiver does not give her a license to abuse you. There are many different agencies and groups that can assist her to allow her keep as much independence as she can and allow you to not over extend yourself. Take a deep breath and take care of yourself, your husband and son also.

  11. Lynn says:

    HI, Pam,
    Thank you very much for your comments. You are right in talking about the need to “pick one’s battles.” I think I’m particularly overwhelmed right now because so much is new. We are arranging for her to get medical coverage, trying to get an order to vacate the dissolution of her marriage (so that she can receive some maintenance from her ex-husband rather than the no maintenance that the judge granted her), and also just working on setting up things for her in the community (e.g., some volunteer activity, library card, meeting new people). She’s only been here a month so there’s just a lot of things and a lot of stress right now. Having the holidays didn’t help much as there were days when offices were closed and also the holidays brought her a lot of sadness due to the rejection from her husband. I have ordered a book about cognitive challenges in individuals with MS that I hope will help me learn more both how to help her and also how to not get frustrated with things that occur. Thanks for your support. I wish you moments of peace for this coming year.
    Regards, Lynn

  12. Charley says:

    I can relate to the negative attitude as my wife of 45 years reacts similarly. I do now attribute it to the disease and try to bite my tongue as much as possible. It is hard to do and we still argue a lot; caregivers have rights and feelings too. I let her know when she crosses the line. It mostly happens when she is being “anal” in my view and criticizes every thing I do.

  13. Marchelle says:

    Pam, I found comfort in your post. My husband of 22 years was diagnosed in 2004. The hardest part for me has been the loss of some cognitive functioning. We are both in our late 40′s and it sometimes feel like I am dealing with an elderly person. I love him very much and will always be by his side. It’s just hard not being able to have a meaningful, engaging, intellectual conversations. In order for me not to become frustrated, or saddened, I have to keep most conversations light, generic and about routine mundane things. I know it’s not his fault, and I have to remind myself of that and just pray for strength and guidance on how to handle it. I miss the old him so much. Every now and then, I see a spark of his former self in a witty comment or joke, and I thank God for those times. I have just resigned myself to the fact that I have to make all the important decisions, choose what we do, handle the finances, meals, and running of the household…Everything. Sometimes it’s so overwhelming. He can walk unassisted and still drive, but I worry when he does. I drive if we go somewhere together, and he’s okay with that. He wants to work but hasn’t accepted his physical and mental limitations. It really helps to have a place like this to vent, where other people understand what I’m going through. I wish we were all in the same location :-) I meant it when I said in sickness and in health, so I’ll continue to do what I vowed to do.

  14. Kathy says:

    Charley
    I have the same problem with my husband he criticizes things I do that he never did before he had MS, after so many times of biting my tongue I have to let go and when we argue it seems unfair I can’t get through to him what I am saying ,and again I am wrong and he is right so I give up.

  15. Lynn says:

    Charley,
    I think that my sister criticizes me because she’s often feeling powerless — she feels like she can’t do a lot of things and I can, so when I make a mistake in her view, she wants me to know it so that we are on more of an equal basis again. Of course, knowing this rationally doesn’t always help me to not get upset when she criticizes me! Understanding where the behavior comes from helps some — I guess I need to try to get enough sleep so that I’m able to be more patient and “bite my tongue” as you say. Thanks for helping me see that what I am going through is common.

  16. Charley says:

    I guess that we are the ones that have to adapt since we are the ones without the disease. Misery does enjoy company so thanks for sharing and good luck.

  17. Charley says:

    Good luck. It is a terrible disease that brings out the worst (and sometimes the best) in all of us.

  18. Marchelle says:

    Hi Lynn,
    What is the title/author of the book that your ordered about cognitive challenges in individuals with MS?

  19. Charley says:

    Lou – ditto on your experience. My wife went to being an active woman (working, church, sewing, music, family) in 2004 to being wheelchair confined with only the use of her left hand. I, like you, have to get up several times a night to adjust her in her hospital bed. Some of the saving graces for me is (1) an overhead lift in 4 key areas of the house; (2) 20 hours of caregivers per week; (3) she still has her mental capacities and can see and hear normal; and (4) I was able to retire early to care for her. It’s been an experience learning how to cook and clean after 45 years of marriage; especially to her “standards”. We did find a portable lift that we can use on vacations which has been a godsend (we went to Branson, MS this year). Good luck and keep the faith. It’s a terrible disease.

  20. Lynn says:

    Hi, Marchelle,
    I just got it yesterday — it’s called: Facing the Cognitive Challenges of Multiple Sclerosis (2nd ed.). It’s by Jeffrey Gingold, published by Demos Medical Publishing, 2011. I just ordered it from Amazon. Haven’t started it yet but it looks informative.

  21. Kathy says:

    This site has been very helpful. I married a man with MS 2 years ago. First marriage at 48 years old and I did not know what I was getting into. I hate getting angry at him when he forgets things or just doesn’t think right. He has a great sense of humor and he walks without a can. He was diagnosed when he was 27 and is now 54. He is a tough guy and continues to do what he can. Not able to drive due to color blindness and other things, but does very well compared to what I am hearing or reading others describe what their spouses can or can not do. It makes me feel grateful. The forgetfulness and cognitive stuff is a struggle for me. I am going to check on the book you ordered. My husband does soduko to help with his memory and seems to enjoy it, but I do wish he would get out and volunteer and be around other people and socialize. I work as a clinical therapist part time right now ( took care of my father until he died in October of 2013). Hoping to continue to build clientele to full-time, but we are good for now. Looking for a support group, but I may need to start as I do not see one in this area. Thankyou for listening.

  22. Charley says:

    Good luck. You may want to go to one of the dinners offered via tha MS Society. We’ve met a lot of other people in our shoes (plus a free dinner and program by one of the drug companies).

  23. Carol says:

    I am in a similar situation, and have also not written for a good while, but your entry hit home and made me feel so not alone at the start of a new year. My husband of 31 years has had PPMS for 15 years. I have raised 2 kids, who are now young adults, and supported the family for most of this time. Exhausted doesn’t begin to touch on where I am at this point in my life. It’s a sad irony that as I get older and have less energy, my husband’s care needs get greater and almost require a younger wife. Also we have become more isolated as his condition progresses, and have lost many of our friends over time, just as I need more help and support than ever. I am in such need of time away, even a day or two…. also feel like I’ve got to do something, just can’t figure out what, when, or how.
    Carol

  24. Charley says:

    20 hours a week of caregivers have been a godsend to my wife and I. We did learn to stay away from the kids though – they don’t want to work.

  25. Kathy says:

    We did go to one of those drug company dinner’s and that was very helpful and comforting to be with others who are dealing with some of the same issues. Again I am feeling grateful today because my husband is outside in this below 0 temperature, clearing the driveway off and putting salt down, taking the garbage out and walking down the hill without a cane or walker to get the mail. I know his condition will worsen over time. He takes 30 pills a day and gives himself a shot 3x a week. He is a tough guy and we have had to go to the ER for pain management and BP issues. Sometimes I think that his memory problem is a combination of the MS and all the pain medicine he is on. I will check and see if the MS Society is having a dinner anytime soon in out area. Take care everyone!

  26. petra bowers says:

    my husband has had been diagnosed with ms since 2000.
    he was doing most things normal, had fatigue – yelly like legs at times and numbness in his hands.
    later on got dizzy and walked like a drunken sailor.
    he had to walk a lot at work and had trouble doing so.
    -when he fell at work he went to a neurologist and got diagnosed. that was in 2000.
    now 14 years later he is in a powerchair…..he can walk some steps to the powerchair with the aid of his rollator or walker.he has a catheter and has to sit to take a shower… .we have grab bars in the shower and I have to help him dry himself and dress. actually I do everything for him.he sits in his liftchair all day every day. we do not have any friends or family come visit us….my son married and moved away a few years ago..my husbands sister moved last year after she retires…they are too far away to come and help me if there is an emergency…..over the last few years as my husband got worse I had to deal with him falling and helping him to get up….one toxic bladder infection and kidney failure (he has a bladder infection every month because of the indwelling catheter),having to deal with every decision myself and doing everything in my household and yard by myself…he almost died from acute kidney failure ,frequent E.R. visits with high fewers because of the toxic bladder infections..no one to go to the hospital with me ….it goes on and on …there is never a getting better but he gets worse and worse. skin problems..hygiene problems….he was recently diagnosed with sleep apnea…now he has to wear a mask to bed which is a pain ,because it leaks air all the time and has to be adjusted..the doctors do not understand what we go through at home nor does family…he spills and drops and breaks things all the time and I clean up the messes…I can not have a normal conversation with him anymore…he does not understand me..or repeats again what I just said ,or argues about not understanding right …it is a chore to have a conversation….I feel, that i’am living with a child and not a 64 year old man…..i’am getting on in age i’am 48 now and have possible fibromalgia,i’am in contant pain ..my muscles hurt in my whole body and I also have joint pain from arthritis….i’am so exhausted all the time physically and mentally…I probably need an antidepressant so I can cope…I just got off Zoloft and now I can hardly cope with my husband, household chores and making decisions….he is hard to deal with will not exercise and do what the doctos and nurses tell him…which is so frustrating to me ..I keep nagging him and yelling at him and telling him that if he does not exercise he will end up in a nursing home ..but nothing helps ..he does not change..this is so hard to deal with his total lack of drive and motivation …he is not even throing the ball for our dog because he says bending down to pick it up from the floor hurts his catheter…we have no marriage really in no sense of the word…what a life…I almost quit and put him in a nursing home …but I just can not do it…I worked in some homes as a housekeeper and they are terrible…but every time something new crops up with his health I panic…this disease is licking me….we stay up all night and sleep some till noon ….everything is turned upside down…

  27. Carol says:

    Petra, my heart goes out to you. The situation with my husband almost parallel’s yours and actually is identical in so many ways. I keep waiting for a major life change, but each day is slow and progressive, and the episodic health crisis only lead to a worse baseline but not a major change in situation. I have begun to try and focus more on quality of life rather than length. My husband also was diagnosed with apnea a few year ago, but the mask is so disruptive to his comfort sleeping, that he doesn’t use it and we have accepted that it is a quality of life trade-off. He sleeps in a hospital bed and the incline helps with the apnea, but he sleeps so much more peacefully without the mask limiting his movement and making him “feel more confined”, since the MS does confines his movement already so much. His diabetes and b/p are also health issues we try to manage, but not at the sake of any pleasure he gets from day to day activities. It is difficult, if not impossible to figure out what to do to make things better, I just hope some magical answer will appear. My prayers are with you and all my fellow caregivers who are so challenged.

  28. Lou says:

    To the both of you My hat is off. I know what you are going through. Im digging the same with my wife. The marriage is managed care. As i said before. Her mind is still strong but her body is gone. I do it all for her. A nursing home is still out if the question. Im sitting in my car writing because as soon as i entrr the house my next job starts.
    Hang in there. Im a man handling a woman. You are women handling a man. Thats got to be hard. Im a Law Enforcement Officer and in decent shape but i still hurt from the daily lifting (and we all know therr is no day off). I was at the doctors office the other day and he flippedly asked how are you doing? I knew it was just routine. Unless you are real ‘ll y where we are you really dont have a clue.
    Again my best ti you both.

    Lou

  29. petra says:

    thank you carol…it seams,that you also have to deal with diabetes and high blood pressure.
    it is so hard to deal with MS ,but if other major illnesses get added to it it is overwhelming.my husband has kidney and bladder control issues.he has problems with itching at times that makes him scratch until it bleeds with a rash that sometimes lasts months.sometimes he develops a hacking cough from medications for days on end till we finally figure out that it is the meds and take him of.
    he also gets edema in his feet mostly and at times it goes up his legs. now we have an issue with his feet sliding and trouble standing when putting his sox on by himself.i end up doing it for him….he tried to go sit on the toilet without using his rollator and fell and broke the toilet tank…he did not ask my help…..I must always be on the ball and alert to catch every little change in his behavior and health..because if I wait too long things could creep up suddenly and become life threatening in no time …to go to the E.R. or not that is the question…thank God that I know a lot of the symptoms he has and what they mean…i’am just happy when all is well at the moment because it could be worse…thank you for your prayers…will pray for you also.

  30. petra says:

    lou
    thanks for your reply….my home looks a lot like a nursing home …we got a lot of handicapped equipment some from the VA because my husband was in the military he is a disabled vet….some I bought on line…I purchased a hoyer lift on amazon to my surprise it was very affordable…also got his lift chair on line…got a credit card and make payments….after his falls I could not lift him and hurt myself trying to do so..so i got this hoyer lift it is a God send ….works great for us..i knew how to work it, because I used to use it in a home for the handicapped, where I worked in activities for a short time…I put it together which if I can do it, anyone can….he has not fallen since he has his catheter in (holding urine used to turn his legs into stiff unbendable pieces of wood )he sits and he also uses his powerchair in the house now to go to the bathroom to empty his bag….the doctors never have a clue what we deal with…sometimes I do not think that they listen too well. they do not have any answers either to most of our problems..they just call them chronic problems and suggest a nursing home if I can not deal with him…but that is not an option for me right now ..I keep him with God’s help as long as humanly possible…

  31. Nikki says:

    I am so glad to have found this site! My Dad was diagnosed with progressive MS in 2007 at the age of 57. Being a proud and stubborn man he lived in denial. He worked for as long as he could, but ultimately had to go on disability due to fatigue and mobility issues. By 2010 he needed a motorized wheelchair to stay mobile.
    However, he always insisted on using his legs whenever he could which resulted in numerous falls. In the beginning he lived at home and had a friend staying with him. He has never fully accepted his condition and is angry most times. The mood swings became unbearable. He rejected any form of help and eventually his friend moved out. This left me in a bind as I’m an only child and my parents are divorced. I also lived out of state so when his friend decided to move out I had just closed on a house! Knowing that my dad shouldn’t live alone I hired caregivers, but that situation didn’t work out as he kept firing them. A few months later he moved into an Independent living facility and we had caregivers coming in. We let the house go into foreclosure. The living arrangement was expensive as I had to keep adding on services and my dad was steadily progressing and needed help with everything. I didn’t know how bad he was getting. He was only in Independent living for a little over a year, before he got worse. So bad in fact, that he developed a stage 4 bedsore and it became infected. He is alive thankfully and doing well, although the doctor has already told me that the womb will never heal 100% so it will require constant monitoring. This has not been an easy time for me. I took 2 months off of work to make arrangements for him to go into a long term care facility and organize his affairs. I have no support, work everyday and his needs have become too great for me to take on single handedly: his dressings need changing daily, he needs to be rotated every 2 hours, the catheter needs to be emptied out, can eat solid foods, but is on an IV and feeding tube to help w/ the extra nutritional needs to heal the bedsore from “inside out”. Honestly, the rate of his progression has taken me by surprise and it’s a lil scary. His mind is still intact aside from memory issues. He calls me everyday from the prepaid phone I bought from him. Living out of state I have less anxiety knowing hat he is now in a facility where his medical needs can be attended to. He has friends and family visiting him frequently. Dealing with a loved one who has MS I have learned to take one day at a time. It’s really all you can do. I am grateful for everyday that my Father is still here with us.

  32. Charley says:

    Nikki,
    How do you find the care that he is receiving? I have heard nightmares about this and my wife is deadset against going into a facility. For now that is O.K. but, if she gets much worse, we may need to rethink it.

  33. Roberta says:

    Hello evertone,

    You cant believe how happy I am to have found this site.
    at least now, I know I am not allone.
    I’ll post as soon as I find my way around here. I am still trying to figure our how to start a new thread,

  34. Kathy says:

    It’s been a while since I responded on this website. My heart goes out to everyone. I think the one day at a time does help and appreciating what goes good or right during the day with your loved one or spouse. My husband was diagnosed with MS at age 27 and he is 54 now and doing well compared to what I am hearing from everyone else. He had to go on disability 7 years ago and is not able to drive now, but otherwise he is fairly independent. The pain effects his left side and some days it is worse than others. We are really having a difficult time with high blood pressure. Doctors do not know what to do and he has been in and out of the ER/hospital a couple times this year. I am working part-time, but need to find a full-time job, but have concerns about working full-time and being their for him. We will be moving in with his dad which could be good and bad. He will be with someone during the day, but his dad has health issues as well. His wife died a year ago and my father died in October, 2013. My mom has health issues and is currently living in an assisted living facility. I try to be there for her as well. I have no right to feel I am sinking or stressed or depressed when I read what some of you are going through. This is a good sight, but I do wish there was a support group for MS or just caregivers that people could meet on a monthly basis. It is so important to take care of yourself. Thanks for listening. kathy

  35. Debbie Krebs says:

    I need to make money and take care of my husband who has relapsing MS. Help?

  36. Debbie Krebs says:

    Hi, My name is Debbie and I was wondering if any one has figured out a way for us to make money caring for our loved one. I am sure that if I were to go out and get a job
    doing the same thing I would get paid but being here 24/7 provided me with no out let, and no money. Help

  37. Charley says:

    My wife had severe pain (level 10) in her right arm up to 6 times a day and up to an hour in length for 2 years with little help from traditional pain meds. She too had high blood pressure issues caused by this pain. Her doctor suggested that she go on Tegretol (both chewables (100 mg – 1 or 2 as needed) and regular (200 mg – 1 in the AM and 2 at night). She no longer has the pain nor the high blood pressure. She did recently have a hospital stay where they failed to give her this med and the pain returned until she started taking the Tegretol again. Good luck.

  38. Ann says:

    I have just found this Site after a very frustrating day/evening. My husband of 33 years has secondary progressive MS. I can barely manage him particularily in the evening as he is unable to do much of anything. He is unable to eat himself, cannot walk, cannot easily transfer and has huge cognitive impairment. I continue to try to maintain him at home but am reaching the end of my rope. He cannot be left alone anymore. I am 70 and he is 67. We have discussed placement but am unsure what he really grasps. This is such a monumental decision and one that I will have to make myself. There is very little family support. If someone has any insight I would be grateful.

  39. Virginia says:

    Thanks for this site and God bless all of you. I know now that I’m not alone..

  40. Virginia says:

    I’ve read all of the posts and I noticed several mentioning loneliness and isolation. My husband tries but can’t understand how I’ m feeling. He was diagnosed a little over a year ago but we know now he’s had MS for some time. At this time he is walking with a cane but his legs won’ t cooperate after 10 to 15 minutes. Very little effort to do something fatigues him and he has to sit and rest before trying again. I’m reading about this disease when I can but you are all right when you say most don’t have a clue.

  41. Chris says:

    I have a question, and this seems to be where I might get an answer… Its about the mental, and personality changes… My wife of 20 years started changing and acting out in near teenage ways about 5 years ago. I thought it was midlife crisis, booze, drugs, etc… But now, as we have been separated for a year, she has just had an abnormal MRI, and the Dr says its probably MS … Could the disease account for some of her mental changes? She’s 39, and I have been incredibly confused about how she could change so much, and how it seems to be cyclic in nature. Like episodes, and she has complained of numb hands, feet, arm, leg at nearly the same time that she would have the urges to act out, irrational behavior, anger and violence, remembering things that didn’t happen. Saying things she didn’t remember, and remembering saying things she never had……. I love her, and thought I was saving myself from a sociopath. If its the disease, and there’s treatment, I don’t want to divorce her, I want to help her… So, does this sound familiar?

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