Housing decisions while living with multiple sclerosis

What do you do when your neurologist suggests that you move to an assisted living facility because your safety is more important at this stage with your multiple sclerosis progression? You don’t want to wind up in the hospital with a broken hip all because you fell and no one was around to help since you live alone.

What do you do when making meals becomes too difficult so you choose a bowl of cereal over making a well balanced meal? How about when taking a shower is more complicated because your hands won’t co-operate when you try to wash your hair or rinse the suds off your body after you lathered the soap. Or when getting dressed in the morning is such a chore that you decide to stay in your PJs the entire day. If you’re in anything else people that see you want to know why you are so dressed up even when wearing jeans and a t-shirt.

I’ve looked into the assisted living facilities where I live and the costs start at about $3,700+ a month which is not affordable for me and my insurance won’t cover the cost. I’m not on a government run program which would make it a little more affordable. I have Medicare and private supplemental insurance which thankfully covers all my medical bills to date but not long-term assisted care. There are limited long-term care housing that they cover.

I spent the weekend contemplating all of my options and of course I don’t want to lose my independence so I decided that I will hold onto my own home until I am no longer able to care for myself. It’s already wheelchair accessible and meets all my current needs. There are still some things that need to be improved on around me but for me it’s home. And besides the people in the assisted care facilities are much older than me so that’s another issue that I don’t think the facilities take into consideration. I’ve heard horror stories of younger people not fitting in and being miserable without people their own age around.

In-home care is much more doable but will still require help in paying the bill, but if I budget it correctly I can at least get someone to help me with bathing, meal preparations and housekeeping a couple of times a week. My current SSDI pays my monthly bills with little left over for anything else.

Thankfully a nurse comes to see me once a month to change my urinary catheter and I have access to the organization for weekly physical therapy and speech therapy in my home. I had put PT on hold but now that the weather is getting colder I am going to ask to start PT for my legs and hands. They always work to keep my muscles moving and help me to stretch my muscles which I need much more in colder weather anyway.

I decided that when my family is gone and I don’t have their support around me, I will sell my house and move to a retirement community. This way I won’t have to do any yard work, home repairs, meal preparations or housekeeping and there will be others around to do things with so I’m not isolated. I will still have my freedom to live the way that I want and hire in-home care to help when needed. That’s still a far away goal but one that I’m comfortable with.

None of those things may happen but I’m prepared mentally if they do. My goal is to live my life enjoying each day that I am given whether I’m weak and frail or full of energy and purpose. You always have a choice in how to live your life. Always expect the best to happen and do your best in every situation.

The constant motion of our lives means looking ahead, thinking through, making plans, and continuously checking off to-do list boxes. It means being one step ahead of something you can’t really know, planning for things without all the details and making decisions based on incomplete information. Each day with MS is an adventure in a world of uncertainties. MS may be taking away my ability to do everyday things but it won’t take my will to live the best life that I have.