What type of care should I research for my wife with progressive multiple sclerosis?

4 answers | Last updated: Sep 14, 2017
A fellow caregiver asked...

My wife is 58 and has Progrssive M. S. I am 66 and supplying all of her care. For the past year and a half she has lost the ability to get in or out of bed or up from her wheel chair to use the bathroom. I am lifting her 8 to ten times a day. I know that I won't be able to do this forever, and worry about a back problem that cutails this ability with out a back up plan! Also how can I learn what to expect as this continues to progress. I do not know what to plan for 1- year 2 years or 5 years from now. Assisted living , nursing home or what? What is the life expectancy of someone with this disease?

Expert Answers

Jennifer Serafin, N.P. is a registered nurse and geriatric nurse practitioner at the Jewish Homes for the Aged in San Francisco.

Reading through your question, it sounds like you are working pretty hard to take care of your wife right now, and this is not going to get easier with a disease like multiple sclerosis. The amount of lifting and other physical care you do certainly takes a toll on you, physically as well as mentally.

You should not expect yourself to care for your wife alone forever. One of these days, you are going to get burned out or hurt yourself, as caregiving is a tough job! What I would recommend is getting in touch with a social worker from the Department of Aging in your area. They can help get you in touch with services that are available in your area that can help. Furthermore, they can help assess your current situation and offer you guidance about the next steps in taking care of your wife. They will let you know if a nursing home or home care is appropriate for you.

Your last question was about the life expectancy of someone with MS (multiple sclerosis). Unfortunately, it really depends on the person, so I cannot really give you facts or figures. The disease will progress, so soon, she may not be able to tolerate getting up out of bed at all. This will open her up to other problems, like pneumonia, skin issues, and urinary tract infections.

Sometimes, joining a MS support group, where you can share experiences and feelings with other people who have similar situations, can be very helpful. Ask your wife's neurologist if any MS support groups are available in your area.

Community Answers

Jeneration answered...

Hello dear man, how very lucky your wife is to have you to care and support her during this huge challenge. I would encourage you to research some alternative therapies as I know there are many who have had wonderful results. I am not speaking of 'cure' here as much as opportunities to increase her quality of life. Diet is the number ONE thing to research, because frankly the mainstream medical community is not always in tune to the importance and connection between diet and the ability for it's impact on the physical as well as mental components of our overall well being. I would caution to do some pretty extensive research before using some of the other 'treatment' ideas you are likely to run across in your research. Other than that, loving her, and showering her with that divine love that is within all of us is an excellent way to cope and move forward. Bless you and she -- it is my belief that we are all in this life to learn, and sometimes simply staying in the moment and asking the simple to complex questions in a meditative way will lead us to answers sought. ♥((✿◠"¿â— ))♥â€

Oldtimer3 answered...

Wife is suffering from PPMS and I have been her caregiver for the last 11 years. She is bedridden, unable to speak, peg tube fed, supra pubic catheter. Have noticed over the years, not much research is done for the progressive types of MS. I just try and keep her somewhat happy and loved. Last neurologist we had tried everything in her arsenal to no avail. We been married for 15 yrs and it a heartbreaking ordeal to watch this. Our daughter never seen her Mom walk. Good luck on your research.

A fellow caregiver answered...

I have progressive MS and am 50. I am on the other side, the one receiving care. On a good day, do ask your wife what her wishes are. It sounds like you are a caring and loving man. We, the MS'rs don't want to burden our loved ones. For us, having someone come two afternoons a week so my husband can spend time with his guy friends, made a huge difference. Also found a college student who does the housekeeping, laundry and food prep in exchange for the spare bedroom. She is quiet as a mouse, and very kind. Sometimes you have to get creative. And yes, the support group is not a bunch of people do a pity party, alot of very good and practical suggestions for the caregiver and the MS'r. I send you hope and joy.