The Diagnosis

When getting labeled with a medical diagnosis, most people don't think of calling an Interior Designer for help.  Let me tell you why you should consider this with a story that hits close to home.  Back in 2016, my Dad was diagnosed with Amyotrophic Lateral Sclerosis, known as "ALS" or "Lou Gehrig's disease".  If you aren't sure what that is, it's a nervous system disease where you slowly lose motor function, your ability to speak and swallow, then your ability to breathe.  It's what took my Dad from us way too early... at the ripe age of 62.


In the beginning he could still do a lot of the normal things like go to work, help me with remodel projects, spend time doing his yard work, etc. Then it progressed.  It progressed into speech difficulty and problems swallowing.  You could see his focus when we would sit down for a meal.  Things got worse, to the point where he needed a walker and then a wheelchair. That's when things got scary. It's when it started to feel real.  The house needed some major modifications. How could he get into the house?  They lived in a ranch, but there are still a couple steps up into the house.  They built a ramp in the garage which took up a complete parking spot.  They needed a special van to get the special motorized chair to and from any outings.  Bathing/using the restroom was the next hard thing.  The master suite was large enough for the chair, but the bathroom only allowed for him to pull straight in and then back straight out, no turning allowed.  What happened when he fell? Imagine having to crawl over the counters, etc. to help a loved one who had fallen on the floor trying to do a simple task like using the restroom or brushing their teeth. Instead of using the master bathroom, he mostly used the bathroom off of my old bedroom. It really wasn't all that bad in terms of accessibility but there were a few problems: his power chair wouldn't fit through the doorway easily, there was a curb into the shower, the sink was hard to pull up to. Take a peek at the BEFORE:

This is where I pushed my expertise.  I could fix the problem. We had to make some modifications, but we could do it.  It would be perfect.  Imagine telling this to someone who is already upset about the diagnosis.... pissed at the diagnosis. Imagine being told, "you can't use the things the way you used to (or one day won't be able to) so we need to make some major modifications".   I was excited to exert my expertise where I had someone who "got" the design stuff. He always supported my ideas.  One time, I mentioned about how I wanted to paint the ceiling in my living room a light turquoise color; I was met with a raised eyebrow.  He later mentioned how pleasantly surprised he was at the outcome. When I wasn't met with excitement this time, I knew I had to do some things to make it feel not so "hospital-like".   Before doing anything, I called and spoke with a representative from the ALS Association, Northern Ohio Chapter.  I had to ask questions I didn't want to know the answers to.  Things like, "What happens when they can't use the toilet themselves?", "What about a seat in the shower?".  I got some answers that upped my anxiety about the future. She mentioned some things I didn't even think about such as adding an extra exhaust fan because for someone who has a hard time breathing the added humidity is not good.  

Next, I started out with measuring and drawing the existing floor plan. I came up with a great option.  There was a way to connect the closet in my old bedroom to the master bedroom so that with privacy, he could be taken from the master bedroom, through my old closet, into my old bedroom and into the new accessible bathroom when he could no longer get himself out of bed. He nixed that idea and decided to keep it more simple.... and by nixing the idea, he did so through his eyes and shaking his head "no". Sometimes I was even met with him throwing his one hand out at me like "no way". Ugh!  We proceeded with the rest of the plan as I drew it up.  Take a look below at the before/after floor plan.  We took some space from the closet to recess the vanity to allow for more floor space and create a nice niche.  

BEFORE:


NEW FLOOR PLAN:

After I had a solid floor plan, I headed to The Tile Shop and Active Plumbing to start sourcing materials.  I fell in love with an accent tile at The Tile Shop that was $49/sf retail.  Okay, this didn't need to be $1/sf tile, but $49 was breaking the bank. I got creative and we used the tile for an accent in the shower.  It's important to have a curbless shower with someone in a wheelchair, in fact, this made it more modern.  I really wanted the bathroom to be modern and a touch more masculine so it was appealing to him.  I wanted it to be a place that seemed "fun" despite the negative feelings that may arise when needing to use the space.  It was a true goal of mine to make it as less stressful as possible.  You know how I mentioned that conversation with the ALS Association representative?  She mentioned that sometimes you need a hoyer lift to get you from the bed or wheelchair to the PVC chair.  This made me sick.  How humiliating.  We wanted to make the bathroom as user-friendly for him as possible so we could prolong that for as long as possible (he NEVER had to do this).  She told me that there's a period of time in which they could use a PVC chair that they're strapped into for showering and using the toilet (they're wheeled over the toilet, then into the shower in the same chair).  I did learn that when you're using a PVC chair, specifically if you're a male, it's helpful to have a tankless toilet (we used a TOTO toilet with the tank actually inside the wall).  The TOTO brand is awesome. There are so many accessible features, not just "fun" features for the everyday person.  The wall plate helps for flushing when his fingers we're losing their ability to do the "pinching" action.  The bidet feature helps for wiping when you're unable to physically do that yourself.  Some people need grab bars by the toilet to help with standing but we decided not to add them in because he was using a walker until close to the end and that served well to help him on and off the toilet.  Then, we chose a linear drain in the shower, trendy, yes, but also practical! This allowed us to use the same flooring throughout the whole bathroom (and we we're able to use larger tiles which is a huge no-no if you have a center drain)!  This is a neat feature I thought.  Then in addition to the horizontal grab bar, we added a hand-held shower head control.  We did NOT put in a hard built-in seat.  With people who are losing weight due to illness or just old age, the hard surface makes it uncomfortable to use.  The standard plastic shower seat you can purchase at Drug Mart worked well for him.  It was padded enough and had arms.  The next thing to tackle was the sink.  With a wheelchair, you can't pull "under" the sink unless you have a sloped apron front or an open counter with a thermal pipe cover.  To save on costs, I designed a custom vanity in hardwood that was stained and sealed to accommodate a fun vessel sink.  There's more that goes into this with verifying the correct heights of things (typically vessel sinks don't work well for accessible uses but I wanted this bathroom to be fun!).  The faucet I selected had a touch sensor.  If you tapped the side of the faucet it would turn on.  This made it easier for him to use when his fingers started to not work as well.  Lastly, there used to be a pocket door into this bathroom. When you have someone in a wheelchair going in and out of a doorway, it's nice to give them a full 3'-0" doorway.  To accomplish this, we installed a custom 6-panel (hard to find a 6-panel door in a barn-door style, but it was important for me that the door went well with the others in the house and that room.  The door has a large handle and was pretty lightweight to make for easy operation.  

All in all, I think he liked the bathroom though he was still was frustrated with the idea that he needed something special for him to function.  He was able to use the bathroom up until close to the end when it became too hard to get up, so I call it a success. July 2nd 2020 will be the 1 year anniversary of his passing. Dad, Cheers to one year of being guided by you from your new home on the Other Side! 


Check out the rest of the photos on my website www.heartfelthomespace.com and don't hesitate to reach out for help when faced with disability or negative diagnosis.  As a human being, I'll meet you with compassion and as a designer, I'll meet you with creative solutions to help you make the right decisions in regards to function in addition to making the space feel cozy, comfortable and not hospital-like.  To start the conversation, schedule a free discovery call here: https://app.acuityscheduling.com/schedule.php?owner=19254865


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