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.

letting go of control

Today instead of a sermon, a member of my church gave a message on stewardship. Only he is a real estate developer who in the current economic situation may be facing bankrupcy, so it wasn't about giving money to the church. Instead, it was about his trying to learn from his experiences this year to stop trying to be God, stop trying to be in control of what happens. He said he hasn't had a transforming moment, a moment of surrender and then everything is different. Instead, it is more like Jacob wrestling with the angel all night. But he knows that being in community helps. And while he didn't talk about this I know he has re-invented himself several times before.

Today I got done two tasks that I had put off for months--revising a professional article and buying air tickets for a Christmas trip. In both cases I was afraid that there would be problems because I had put the task off so long, but they went smoothly. So I got away with being gentle with myself, not forcing myself to deal with those things earlier. I felt "I do what I can do."

I really don't know how much is reasonable to expect myself to be able to do. John can still take care of himself, though I have had to take over a lot of family organizing. My time isn't terribly full (particularly if I count the work time I could use for writing projects). But knowing the situation we are in is such a drain on my emotional energy. I think I have let go somewhat of trying to plan too much for the future, but I tend still to be braced for something bad to happen. How can I let go more of wanting to be able to predict my days and be more flexible to take advantage of what opportunities I have?

Reclaiming myself

For the last week of the journaling workshop, we are supposed to write about reclaiming ourselves.

Reclaiming myself:

How much of me is going to be left, after what I am guessing will be 10 years of caregiving? I’m hoping not to have to give up my job, but I worry whether that will work. Right now John is pretty functional, and yet I already feel my freedom to follow my own path has been taken away from me.

A priest suggested that I ask myself where I would have hoped to be in 10 years if John hadn’t become ill, and then see if there was any small part of that dream I can hold on to. I would hope to have written a more important scholarly book and to have served a term as president of one of my professional societies. I would hope to have done an Ironman triathlon. I would hope to have built the program I run into a major. I would hope to live a simpler life, to have reduced chaos in my house and made my life more peaceful.

I guess I need to take that last one more seriously, because it is the one I can have. And in fact we are making plans to move in a year to a smaller house. As the appraiser commented today, the problem with a house with lots of storage space is that one accumulates lots of stuff. I keep clothes because they are classics or because I might wear that size again. I keep books because isn’t that what one does with books? I stock up on food and office supplies so I will have on hand anything I might need. I keep bills and bank statements and the like because it is too much trouble to sort out what should be kept. I keep china and decorative objects because my kids might want them. I need to change my thinking.

A friend’s mother used to tell her: “Someone else could be enjoying that right now.” Instead of holding onto things because I might need them in the future, I would like to learn to let go of anything that I haven’t used in years. I imagine that doing so is a step on the road towards becoming a person who radiates peace.

secrets

We had lunch with John's aunt today, as we do most Sundays. She is 96 and gets around with a walker, but is fairly sharp. She moved here from Oregon about 15 years ago because John is her closest relative--she never married. She lives in an apartment in a nearby retirement community which does have different levels of care. Lunch is provided in the dining hall but she hires a driver to take her out to buy food and still makes her own breakfast and supper. Occasionally she comes to our house for supper but more often John picks her up and we have lunch together at a restaurant.

What worries me is that John doesn't want to tell her even that he has Parkinson's disease. She tends to be obsessive about health and he doesn't like it when she criticizes his food choices (she carefully eats a very low fat diet). He has been good about helping her himself when she occasionally needs help, not putting it on me. But it worries me that she is counting on him to continue to be available.

I told John that at least he should get her to change her durable power of attorney document so that it would name me as backup. He said he could do that, but I don't think he has raised the subject. I can't imagine doing it myself because I am so uncomfortable with keeping secrets that the only way I know to respect his wishes is to avoid any related subject.

house renovations

I sent out 5 or six emails the end of last week looking for leads about house renovation. So far one call, and it is an interesting one from a designer. The man doesn't have particular experience with home design for disabled persons (though he said he had worked with such issues in institutions) but he said he has 50 years experience in design, contracting, architecture, and engineering (he is now semi-retired). I asked him to define what he would do for us and he said he would want to examine the house carefully and take measurements, discuss with us in detail what we wanted, including explaining our alternatives for different cost and quality, and then produce a design for us. Once we have the design, if we wanted his help with finding contractors, etc., he would give us a proposal and we could choose whether we wanted to contract with him for that. I asked him how much having him do a design would cost, and he said $500 to $800. That's worth it just for what we will learn, whether we use his design or not.

John liked my description--he felt that because this man wouldn't be trying to sell us something he would be able to tell us whether the house is really suitable for what I'm thinking we could do with it. So finally I'm making progress. Though meanwhile the roof of the house we live in how is leaking, when I thought I had solved that problem.

Worry

Barbara Crafton writes:

Planning and worrying aren't synonyms. Planning is developing strategies, which is a good idea. Worrying is experiencing pain in advance of its actual arrival in your life, which is not a very good deal.

Read the rest (Christian).

should we move?

Pearose makes an excellent point in the comments to the last post that it would be better to move while John still can learn the space.

We would move to another house in the same town, where I work, so it wouldn't get us better services. I would like to move back to the house we used to live in, which we kept when we bought a bigger house. It is rented to students so we probably couldn't start renovations until next summer. It has a finished basement that is ground level on two sides so you can walk in from a carport with no steps. That would be John's space. We lived there for four years when we were first married but John doesn't seem to have the good feelings about it I have. He doesn't want to move and have to get rid of stuff, while I want to move while he can still be of some help. I would like to move to a smaller house because it would force us to simplify, and I want a house where his disorganization doesn't take over the public parts of the house. Or would moving just be too stressful?

I need to find an expert to advise us on whether the lower level of that house could be made into a nice safe space for John. A friend recommended a pamphlet on such issues and then finding a Certified Aging-in-Place Specialist. The only person who comes up on that search in this area is a builder, so I'm not very hopeful. Another question for the Alzheimer's Association.

That thought finally motivated me to make the contact. I have so many negative feelings from my grandmother's dying from Alzheimers that it is particularly hard for me to identify with the Alzheimer's Association. But I got an email back almost immediately from the program director of the state chapter, who lives in the same town we live in. And she said that someone in the next town over is starting a support group specifically for Lewy Body Dementia! I was feeling no one in this area had heard of it. I am much relieved that I have found people who know what is available locally.

If the Alzheimer's Association has on-the-ground support here in rural South Carolina it should be helpful almost anywhere in the US. I recommend searching by state (click on the map to get to the web page for your state chapter)--their zip code search did not give the office closest to me.

focusing on the future

In a group I was in yesterday, someone said: "Don't be anxious, God has a plan." Or from Exodus 14:14: "The Lord will fight for you, and you have only to keep still." (New Revised Standard Version)

I am anxious about the future. One of my reactions to the diagnosis was that I want to spend six months getting things in order, before focusing just on living in the present and taking advantage of the time we have. I've actually made some progress. I met with our lawyer and found the only thing I needed to do was to change my power of attorney from John to my sister. I haven't started working on the question of whether we should stay in this house or move, but I've got some idea of what the next steps are. We are making progress in getting our financial affairs in better order. The financial planner is looking into an impaired risk annuity for John's retirement savings. I just heard that I was approved for long-term care insurance at the preferred rate--too late to get it for John but I now have it for me.

But I can't imagine what I will do when John needs full time care. I thought I could do some research and at least understand the options, but I'm not finding decent options. I don't want to retire. There is adult day care in the area, but I wouldn't be able to get him up and there and still get to work at a decent hour--I'm an early riser and he isn't. If he needs more than a sitter, full time care at home is likely to be too expensive. The local nursing homes don't have separate dementia units. I hear the closest nursing home with a good dementia unit is in a city 40 miles away. I guess it is time to call the Alzheimer's Association, as the most relevant organization that is actually on the ground here.