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

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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