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.

Two years

It is about two years now since we realized John had Parkinson's disease. He was diagnosed as soon as we saw his family practitioner and sent to a neurologist and then to the Movement Disorder Specialist who said Lewy Body Dementia.

John is doing better than I had expected. Our son, who isn't very observant, said he thought John hadn't changed significantly in those two years. The changes I see are that John is slower and gets confused more easily. But he is still taking care of himself except for wanting help putting on his socks and he still doesn't have hallucinations. He did a driving evaluation with the occupational therapist at the rehab hospital and passed. I think our new renovated house has improved our lives--he can deal with his sleep issues by watching tv or listening to books on tape in bed or sleep on his back and snore. We have a caregiver/cleaning person twice a week who does her best to keep his chaos under control. I'm happier anyway now that I have my own peaceful space.

He is in somewhat more denial about the cognitive issues, but he admitted recently he can't handle financial matters and the like when he asked for my help with a situation where he has been dropping the ball for years--serving as executor of the estate for some people who were important to him when he was young. I thought he had withdrawn a year or so ago but it turns out he didn't. I will play the illness card on that one--tell them he has early dementia and doesn't like to admit it. We also have arranged for an accountant to help aunt Florence with her finances so she doesn't keep asking John for help.

John and I talked a little about how he is doing better than I expected after two years. He wondered how much of it is due to his taking coconut oil and MCT oil? No way of knowing. He does have impaired glucose tolerance, so if some dementia is a kind of diabetes in the brain he is likely to be in that group. And that is what the oils are supposed to address by providing ketones as an alternative fuel for the brain.

We saw John's neurologist yesterday and the doctor was pleased with John's muscle tone. John is working with a better physical therapist and she has even motivated him to do some exercising on his own. He has even gone out for a walk a couple of times in the last few weeks. I just wish he didn't have such a tendency to decide to go for a walk or to go see his aunt Florence at dinner time.

spring break

This upcoming week is my spring break and I don't have any travel plans except to take our son on a day trip to revisit a college before he makes his decision. I'm trying to use the vacation to do things that have seemed too stressful to face. I've found most of the missing documents for our taxes, except the ones from Social Security (sigh). But when I went to look for one missing tax form I discovered I hadn't paid it. No doubt they sent the bill to the mortgage company for the mortgage we paid off, but I should have thought of that.

I was in a hurry to get this year's taxes done because of college financial aid forms but it has become clear that we won't get any aid, except at one school that offers scholarships for in-state students. I wrote some letters explaining our situation but our son doesn't qualify because of a savings account my father established for him, before considering parents' income. I'm glad our son has the money for college but it makes me feel badly about not helping him much.

The big task for the break is house matters. I was reading about basement refinishing last night and discovered that there is a better approach than what I have been hearing so far--wall and floor products that will not grow mold. I have an appointment with the designer tomorrow but the two contractors I called yesterday haven't called me back yet. We have an appointment Monday with the realtor who will list our current house and I had a good conversation with him on the phone. He used to be our travel agent so John feels comfortable with him. I'm dreading what he is going to say about what we should do to make the house look better, but I've already told him that is going to be a problem for us.

snow day

We had a snow day here, which allowed me to catch up on some tasks I had been avoiding. As the roads were still slushy I drove John to get some lab work done (he grew up in Texas and has never felt comfortable driving on snow). For the second time in his life they had trouble drawing blood. This time he insisted they use the back of his hand after trying his arm once and that worked.

It was quite late in the morning and he hadn't eaten, but he had been drinking water. I asked the technician if it could be a result of low blood pressure and she said yes. But it still seems strange that he has started having problems--his blood pressure isn't that low and he doesn't have small veins.

He called the credit card company and it turns out the credit card I was worried about is actually in both names rather than having him as primary. We lowered the credit limit--not as much as I would have liked but it is some protection.

away

This trip has been somewhat restful, as I'm less involved with this professional society than with the other two (and also because I drove rather than flying). John took my suggestion and took Aunt Florence out to dinner and said that went smoothly. I don't yet worry about John managing while I am away, but I do worry a little about his spending money. He only spends money on audiobooks and wine, but he has very high standards in wine. I've tried a little to get some control, but he hasn't gone along. I suppose I should push the issue more and say what can we set up now so that it isn't a problem later.

good news

We heard today that John was approved for Social Security disability. He applied, was turned down, we filed an appeal ourselves, and now he is approved. That is within six months of when he applied. It is a little more than 6 months from his date of disability (last May) but that is because we waited several months before applying. Someone told us to wait until his disability was approved from his state goverment job, which turned out to be bad advice (particularly because he was 62 years old and thus eligible for early retirement).

The people we have dealt with at Social Security have been wonderful. Today, the person who called explained to us that because we currently have two children drawing benefits, we are getting more from retirement than we would get from disability. When our son is finished high school in May then the total family disability benefit will be higher than the retirement benefit. So they will send us papers for John to sign to stay on retirement until June and then change over to the disability that has already been approved. That then gives him about $300 a month extra for the rest of his life (he is currently getting just over $1,000 a month so that is a significant increase).

glad it is Friday

John's cough is gone today. I'm still not feeling well. I got home early this afternoon and tried to catch up on various things that need to be done. I got very frustrated trying to fill out college financial aid forms, and I'm afraid I took out some of that frustration on John when I asked him to call his retirement office (forgetting they close early on Friday) and then he kept telling me that the information I needed didn't make sense.

I'm pretty financially savvy, but I had no idea that John's retirement benefits have a value, as an asset, equal to the total that he contributed minus what has been paid out to him so far. On the other hand, an annuity with no payout after the person dies does not count as an asset. Thank heaven for kind people, in this case a financial aid person at the college that is probably our son's first choice. The good news is that I got the Profile form submitted.

financial forms

I'm filling out the preliminary college financial aid forms for our son, who will go to college next year. His grandfather gave him a very nice college fund so he isn't going to get any need-based aid but paying for his college isn't a stress on us. But I still have to fill out the form for him to be eligible for merit-based aid. The trouble is that 2008 is a transition year for us--John worked all of 2007, half of 2008, and will work none of 2009. For the next few years his retirement plus social security plus private disability insurance (which only pays until he is 65) won't be that different from what his salary would have been.

But where I am seriously stumped is that I don't know what of John's income is taxable and what is tax free:

• Is social security retirement (or social security disability if he gets it) taxed?
• Is his retirement income from his job as a state employee taxed?
• Is his private disability insurance taxed?
• The one I am pretty sure of is that his annuity income is taxed, as we bought that with untaxed money such as IRAs

I was thinking maybe I could get someone to help me with the form but after going through it once myself the problem is that I am going to have to go to several different people to get answers to different questions. I am grateful at least for a good online form that saves the information I entered and then prints out a list of questions I still need to answer.

financial

I went to the Human Resources department at work to clear up a last financial question. I wanted to change my beneficiary so that if I should die before I retire and John is still alive, my retirement benefits would go to our kids instead of to John (this has to do with getting things out of his name in case he has to go on Medicare). I was worried that because they are young they would get a trivial amount per month. Instead, I was told that if they get the benefit they split a monthly benefit for their lifetimes that is 3/4 of what John would get per month. So they would get a lot more over their lifetimes.

John is safely in Washington DC and I am enjoying the quiet.

quiet weekend

I don't have Monday off--the university where I teach doesn't give Monday holidays (except Martin Luther King Day). But becaused it is a holiday weekend there is less on the calendar, so it feels restful. We were going to go look for a car for John today, but then we got interested in a Scion XD and the dealer will call us when one comes in in a couple of days. John has been driving a Dodge minivan, but it has over 100,000 miles on it (and we haven't found them terribly reliable) and John passed his driving evaluation. I have no guess how much longer he will be able to drive, but we have two kids with learners permits so we are likely to continue to have a use for a second car.

We think he needs a car where he sits up fairly high so it will be easier to get in and out. I like the Scion as the smaller equivalent of a minivan with the lowest cost and best gas mileage (the Honda Element is bigger and only seats two in back). I have a 2008 xB that I like very much. The Scion xB is the car that looks like a toaster, only the 2008 version they made larger and not quite so boxy. We were looking for an older used one for John, until I happened to look at the xD model, which is more of a hatchback and less of a miniature van and costs under $17,000 new with automatic transmission. The next step is to try one out and see if it is as easy to get in and out of as the xB.

I looked for some kind of listing of cars that are easy to get in and out of or are suitable for people with Parkinson's disease, but I can't find anything but reviews of wheelchair conversions.

journal workshop #2

My second writing for the journal workshop, with prompts in red:

Which parts of caring for a loved one give you joy?

At present I don’t feel a whole lot either of joy or of love. At the time when John was diagnosed I was feeling dissatisfied with the relationship even though we have usually worked together well. I had grown and changed and he wasn’t willing to grow with me. I don’t know how much of that was already the disease. My other issue with love is that I always expected love between husband and wife to be some balance of meeting each other’s needs. I haven’t learned how to feel love for him when there isn’t reciprocal care, when he doesn’t respond to my needs. I did that kind of caregiving for my kids when they were small, of course, but I had John to take care of me. It wasn’t easy for me; I felt I was giving what I didn’t have. I depended on John to give me what I was giving my kids so I wouldn’t feel resentful that I was giving what no one had given me. He remembers a day when I was frustrated with our son as a fussy infant and got angry at John. He said “Don’t take it out on me,” and I said “Who else do I have to take it out on?” I don’t have a partner of that sort in this caregiving.

The parts of caregiving that are easiest for me are the planning parts. I’ve gotten our financial situation into shape, from his retirement to my investments to buying long-term care insurance on myself (too late to buy it on him). This week I started work on changing the beneficiary on my retirement accounts, just in case I die before him. I’m also working on probably moving in a little less than a year, planning renovation of another house we own to be handicapped accessible. (It is currently rented to students, so it needs a lot of renovation.) I’m also good at understanding medical information and dealing with doctors; I know John is doing better than he would be on his own because of my attention to getting him the right medical care.

Which parts do you resent?

I try to avoid getting into a place of doing something resentfully—that isn’t good for anyone involved. The place where I am struggling most with resentment these days is when I set something up for John and he doesn’t follow through. He went to an exercise class I found for him and said it was just what he needed, and more than a month later he hasn’t been back. He said he would mail a package so I put what needed to go in it and the address all together, and then over a week later he hadn’t gotten it done.

I’m learning to be better at figuring out what is easier to do myself and what I have the patience to let him do. But there are things I can’t do for him, particularly at this stage when he can still manage activities of daily living on his own. Maybe I should exercise with him, but what works for him isn’t what I want or need.

What do you miss about your old life and what do you love about your new life?

I miss the freedom to train (run, bike, and swim) 12 hours a week as I was doing a year ago. This year I’m averaging 6 or 7 hours a week. I miss time when I can make my own professional writing first priority. I miss having someone to divide tasks with. I miss being taken care of sometimes. I miss being middle-aged, not yet thinking about retirement. I miss all those expectations that life would go on the way it was going. I also miss my kids now that they have gone back to school.

My first reaction was that there wasn’t anything I love about my new life. But I love the support of my daughter and my therapist. I actually think I also love the sense that everything is important. My planning and my decisions matter. We can’t take life for granted so much any more.

simplify, simplify

A couple of years ago I went to the annual gathering of the Thoreau Society when the theme was "Simplify, simplify." They were selling t-shirts that said "What would Thoreau do?" It crystalized my desire to simplify my life, but I haven't made very much progress.

I spent an hour or two today going through boxes of John's mail (a longstanding problem) trying to make sure that we found all of his IRA accounts to roll over into an annuity. I found four old accounts in addition to the current retirement savings account. That all five will be consolidated into one account feels to me like a real achievement in making things simpler. The discouraging thing is seeing how much better our situation would be if he had invested his money differently, but that reflects decisions he made 20 years ago and never revisited, not recent problems. He used to listen to the business news and have strong opinions, but he didn't act on them.

There is one other account that can't be consolidated because it isn't pre-tax money. I asked John what he wanted to do with that account and suggested several options, but he didn't show interest in any of them. It startles me to have him not have an opinion.

disability

John got word today that he has been approved for disability retirement from his job. That gets him a higher benefit than regular retirement would have, though with only 18 years in the job it isn't great. Now that is approved we started the process of applying for Social Security disability. We went down to the Social Security office, and amazingly didn't have to wait at all to do the preliminary steps. We have an appointment Monday to do the final application. And while disability usually takes a long time, since John is 62 he will apply both for regular retirement and for disability. He will get the regular retirement right away and then a lump sum for the difference if/when the disability comes through.

We knew our daughter would get benefits until she is 18 if John got disability, but we got further good news on that. We should get those promptly because Social Security benefits for a dependent child come with regular retirement as well as with disability. I had no idea that children could get benefits when a parent retires; I guess not very many people retire with children under the age of 18. In addition, even though our son just turned 18 he will get a year of benefits because he has one more year of high school.

We also met today with the financial planner we have been working with, and he had found John an annuity based on his diagnosis (called an impaired risk annuity) that pays 10% guaranteed for however long he lives. We will consolidate his tax deferred retirement savings and various small IRA accounts he has accumulated into that annuity.

I was worried about our financial situation this year because I thought things would take longer to kick in. We actually are in surprising good shape for the next three years, as our daughter will get Social Security benefits for three years and John has a private disability insurance policy that will pay until he turns 65. When his expenses go up after that we will be in a more difficult position as he does not have long-term care insurance.