My MS 'Next': Considering Home and 'Re'-Homing Care

By Dianne Scott

2 min read

I've been grappling with thoughts of my MS 'next.' Who knew that a 'pivot' could induce such major changes? I didn't. It's time to really evaluate what specific care I need at this juncture – and who can give it as well as where I can get it.

Needing help with daily activities now

I require help with ADLs or "activities of daily living." In short, this includes meal prep, personal hygiene, and managing household tasks and mobility. I'm now at the place where I can stand (with assistance), but no longer pivot. So I stand while my children pull back my lift chair and put what I need (my commode, shower and regular wheelchair) behind me, and I sit.

My caregivers are unable to move my chair back according to the agency's policy relative to lifting (although it isn't actually lifting, just perhaps an awkward move at most). This means they're unable to help me with toileting or getting into my shower, and many (I find) are inept at proper bed bathing. Presently, my children do what the aides cannot, but they're moving into their 'next,' so I find myself thinking, "When what I have in place is no longer an option, what next?" Toileting and good hygiene is crucial.

Thinking about my future

When hoyer lifts, bedpans, and bed baths become necessary, might I need caregiversand home health aides or nurses to come into my home throughout the day and night? I don't want to have someone around all the time, but if it came to that, availability of aides could be a hindrance. This could result in 're‐homing' or transitioning to a facility where there's always staff to assist you. I don't want that either.

Yet all things must be considered, because my overall well-being is at stake. I started the research of what my 'next' may well look like. Here's some of the information I found.

Different types of care options

There is long-term care, whether in your own home or facility, for those who are unable to live independently. There are different types of long-term care, such as home-care services provided in your home by caregivers or home health care aides when you need help due to serious medical conditions, aging, or impairment. They may also help with ADLs, food preparation, and household management.

There are skilled nursing facilities, which provide inpatient nursing care and are where you may be admitted after a hospital stay to continue recovering or rehabilitating. There's assisted living, which provides residents with daily care but less than what's needed at a nursing home.^1,2

And then there are nursing homes. They fall under extended care and offer the highest level of care for those who don’t require hospitalization, by a staff of nurses. They may cater to those who are wheelchair-bound, spend a considerable amount of time bedridden, or have dementia.^1,2

Moving forward

I watched a show on television, and a character was asked how how she deals with emotional pain. She responded, "Every day I make a choice to put one foot in front of the other – and I make it." That made sense to me. MS is a disease with dastardly effects, always having thoughts of my 'next' lingering about. I'll just continue putting one foot in front of the other (figuratively speaking of course), and I will make it – in my own home or otherwise.

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Therry Neilsen Moderator & Contributor
Dianne, this is brutal. These choices make all the difference, and I always feel like a lot of our agency depends on our resources, our insurance, and our savings and of course on our care community. So much depends on what we can muster. I think of you reading your poetry so effectively, and then I think about your difficulty pivoting and living with the limitations this disease has handed you without so much as a by-your-leave. It's not fair, and my heart turns over for you. Please keep us posted and know we wish you the best.
Kim Dolce Moderator & Contributor
Dianne, what Therry said, every single word! Also, it seems that the system is designed to fall short of covering a disabled person's full complement of needs, in perpetuity. A legacy no one would find calming or reassuring. How many times, and in how many ways, will we be required to prove how poor we are (to get financial assistance), how disabled we are (to get hands-on assistance), and how mentally competent we are (to get help sorting out our particular journey's demands)?
monk Member
Dianne, I feel for you. I had to move from my home to an assisted living. It was hard at first but now I'm happy here. Of course it's very expensive and once I've use up all my money I'll need to transition again
Margie50 Member
The last thing I want is to be in a nursing home or "rest" home. I've worked in those places! But the time will likely come that I will need to go where I don't want to go. I've raised all boys - I don't want to inflict my personal care on my grown sons and certainly not on my lovely daughters in law! So the decision is already made, ahead of time!
1. Erin Rush Community Admin
 <inline-mention username="Margie50" user-id="4196471"/>, I hear you, but, your boys (and their wives) may surprise you. I know you would never ask them to care for you, but they may choose to step up. Heck, my dad has been taking care of his mother-in-law and while it's been hard, they both have learned a lot about love and compassion and patience from each other. Also, as Boomers are aging and retiring, I have hopes that they will continue to reshape aging (and assisted living) the way they have reshaped pretty much every cultural milestone they hit. Frankly, I don't remember such quality graduated assisted living options when my great grandma was in care. And while that care does not come cheap, I have hopes that the model will continue to expand and grow and include more people of lower income levels and not just those with nursing home healthcare insurance. But, like you, I am well aware that many places are incredibly understaffed and the staff is also very underpaid and there are definitely places I would NOT want my loved ones to go to. I hope you do not require that level of care for many, many years to come and that, if the time comes, you have decent options to choose from. Best, Erin, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.