Sunday, August 21, 2011

Looking back on home renovations for dementia

Two years ago we were deep in home renovations, and now I am perhaps ready to write about it.  It was an intense process, but it has been worth it.  I had a hard time finding advice on home renovations for dementia, so I will try to pull together what I learned here.

We already owned the house we renovated, but we did not live in it.  When we had our second child and moved to a larger house, we kept our smaller house--living in a college town it rented for more than the mortgage payment (and that was a 15 year mortgage).  It was rented for about 15 years, mostly to college students, so it was in bad shape.  But I wanted to downsize and simplify our lives, and the small house had a lower level that was walk-in from a car port with no step at all.  My husband didn't like the idea at all.  He remembered the lower level of the house as damp and dark, and he didn't want to face moving.  But he said when I got an idea in my head there was no stopping me. The picture below is the house before the work began.
The house we renovated was built in the 1950s and had hardwood floors on the main and attic levels, plaster walls, and three bathrooms, one on each level.  The picture below is a view from the dining room into the living room on the main level, after renovation but before we moved in.
What I want to focus on here is the renovation of the lower level, which became my husband's space. I had been frustrated in our previous house by his tendency to pile his stuff in any area I cleaned up, and because of his REM sleep behavior disorder and odd sleep patterns I was ready for separate bedrooms. So he was to have his own space on the lower level, and his chaos would stay there, sharing the space only with our son who was leaving for college.  This is my husband's sitting room, which also has a desk.
The middle room has a sink and refrigerator, an eating table, and a corner nook with bed and large closet for our son.  All three rooms got drywall over the cinderblock walls and laminate flooring (no rugs).  We added two closets, one in the sitting room as well as the one for our son.  We put in kitchen cabinets and counter and a new sink (the lower level had once been an apartment so there was already plumbing for a sink in the middle room).  With a microwave on the counter my husband can make his own breakfast and lunch.  The view through the door in the background is into his bedroom.
The biggest job downstairs was moving the bathroom, which was in an awkward place at the bottom of the stairs which made it impossible to enlarge in its original location.  To move it, the floor was torn up to put in drain pipes to a new bathroom location in the corner of the middle room, using the cement block foundation for a small porch as the basis for a roll-in shower (that is, one with no lip between the shower and the rest of the bathroom.
The shower has both a permanent showerhead and a hand shower.  The controls are just outside the shower (necessary because of the cement block)--one control adjusts the water temperature and then two separate controls adjust the volume of the shower head and hand shower  so that either one or both can be on.  I made sure to get a hand shower with an on-off switch on the hand unit as well.
Opposite the shower is a bench to sit on while dressing.  The towel racks are actually grab bars so that they won't give way if leaned on.  The door to the bathroom opens out to avoid the problem where someone falls in the bathroom and needs help but is blocking the door.
We ended up designing the bathroom with a toilet area on the other side of a load-bearing wall, so the doorway to the left in the picture above goes through that wall but does not have a door.  A fold-down grab bar makes it possible to have bars on both sides of the toilet and a wall-hung sink would allow a wheelchair underneath.  The lower half of the bathroom walls are painted blue to make it easier to see the white toilet.  The toilet has a Toto Washlet water squirting seat.  My husband was very dubious about the idea, but once he tried it he loved it.  It is quite easy to install on any toilet if you have an electrical outlet next to the toilet.  In selecting a toilet, I was careful to choose one with maximum flush capacity.
The overall renovations were also a big job.  It turned out the house needed to be completely rewired and replumbed and we bought all new light and plumbing fixtures and completely redid the kitchen.

We also went ahead and put on a new roof and all new windows.  The floors were refinished and all rooms were painted.  The one major change we made in the structure of the house besides moving the lower level bathroom was to add a dormer to the attic bedroom, as the stairs came up to the wall in a way that the building inspector was never going to accept.  We figured out the dimensions of the dormer as they cut the hole in the roof.
Below is a view of the finished dormer from the inside:
I don't know how we could have done the renovation if we had not owned two homes free and clear.  I arranged a home equity line of credit on the larger house, and then we were lucky enough to sell it right about the time we moved.  The renovations cost over $200,000, which I had not expected when we started the process.  In other terms, the renovations cost nearly the appraised value of the resulting house.  It makes sense if it keeps my husband out of a nursing home even for a year or two, but it didn't make sense in terms of what it added to the value of the house. The job took seven very stressful months, working with a contractor who usually built new houses. I am happy we did it not only because my husband can take care of himself more with everything arranged for his convenience but also because moving motivated me to declutter and make myself peaceful space in which to live.


Anonymous said...

Hello Pam:
I came across your blog on LB Dementia and it contains much of what my family is dealing with now. My dad is (was) a dynamic, vibrant 82 year old whose recent falling, memory lapses and odd sleeping patterns have been grouped into the diagnosis of LB Dementia. He believes there is nothing wrong... But my 80 year old mom has now taken over the usual housekeeping stuff PLUS the bills etc. I am a single mom of two young children and work full time as a physician. My folks and I each sold our homes and they are living in the master-on-the -main of my new home while we renovate the house they just bought next door!! Needless to say, we are reeling from the very dramatic changes in my dad -- though in looking back we now see this was there 2 and 1/2 years ago. Besides the sense of loss for my mom, my children and me, we are also feeling quite abandoned by the healthcare community: nobody has stepped forward to help navigate us through this. Nor can I find anything practical about what to expect with LB Dementia, and the time frame of these changes. Because my dad believes there is nothing wrong with him and refuses to revisit the neurologist, we are befuddled about where to turn and how to proceed. The concept of Nursing Home does not exist anywhere in our family tree, hence we blindly move forward without appropriate guidance. Sorry to lay this on you, but in this era when the extended family is 'doing their own thing' and the medical system is productivity driven (I call it High Tech and Low Touch) we really can't turn to the doctors for that guidance -- hence my use of the blogosphere to reach out and get ideas. Thank you. PS: estate planning and POAs are already complete.

Pem said...

@MUJERLTINA I recommend the yahoo group for caregivers at There is a separate group for spouses that I belong to. Unfortunately it is hard to find doctors who know much about Lewy Body Dementia, but movement disorder specialists can help. See if your father is willing to be evaluated for Parkinson's disease if you argue there is medicine that could help him with the falling.

The time frame is hard to know. I was told life expectancy 2 to 20 years. My husband is progressing slowly and 2 1/2 years after diagnosis can still mostly take care of himself, though slowly.