tough decision

I'm getting close to deciding John has to go into a nursing home, whether he agrees or not.  He would say can't he stay home with more help, but that doesn't seem realistic to me.

A couple of weeks ago he suddenly got much worse, unable to transfer at all (we basically had to lift him between chair or toilet and wheelchair).  We thought that might be a urinary tract infection and with antibiotics he got somewhat better.  But he didn't get back to where he was; he can occasionally use the walker but mostly he is in a wheelchair.  He has a lot of tremor in his hands; food ends up on the floor when he eats.  He spends many hours a day on the toilet: trying to urinate, dealing with constipation or diarrhea  (trying to avoid bowel incontinence), cleaning himself.  Occasionally he has to cath himself.

Unless it is a particularly good day, he can no longer heat up his own leftovers (or frozen prepared food) or make his own smoothie.  He is falling perhaps on average once a day, and fairly often it takes our son and I together to get him up.

If it was likely he only had a few months to live I would keep him home.  But it isn't clear what symptom he will die of.  The most likely one would be swallowing problems leading to pneumonia, but his swallowing isn't noticeably getting worse.

He desperately wants to be home.  We had a conversation with the hospice nurse, who felt he wasn't safe at home because of falls.  He proposed more help in the evening and also agreed to a monitoring camera so I can check on him.  He said "anything is better than what Pam is thinking." But what I am thinking is that I can no longer give him the care he needs.  He is not getting all the help he needs to sleep comfortably because I need to go to bed.  There aren't always going to be 2 of us here to pick him up.  He isn't taking his medicine much of the time unless I put it out for him.

Yesterday I had a bad sore throat and wanted to rest and stay away from him.  When he woke up I did push him into the bathroom and change his briefs and pants for him and get him icewater.  I think he was in the bathroom all afternoon. When I went downstairs to tell him I would bring him down his dinner he said he would fix himself something else to avoid my germs.  But then he sent Paul up for the stew I had made; he realized he couldn't manage getting himself something and he needed food.  He told me he did want me to get him ready for bed, but then he changed his mind when I said it needed to be at 8 pm because I needed to go to bed early. I was woken twice, though I didn't have to get up.  Once was by a phone call that John didn't get to, probably because he was in the bathroom again.  And once was by him calling for Paul, I'm guessing to help him get his pillows so he doesn't fall sideways over the arm of his recliner.

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.

changes

Yesterday I took John to try out a lift recliner, and he liked it. Now I need to find a medical equipment place that is a preferred provider for our health insurance and see if buying one there (with the insurance paying $300 for the mechanism) actually comes out cheaper than buying one from a furniture store. John isn't on Medicare yet, but I did get a message from someone at our insurance that with a letter from the doctor they will cover it.

I assembled a couple of shelf units for Aunt Florence. She is buying specialized things so as to get every possible bit of storage space in her smaller apartment. She wanted John to assemble them for her and he tried the first one and couldn't manage it and asked for my help. I just wanted to get it done today so that I will have as much flexibility as possible tomorrow.

Tomorrow is my birthday and I am trying to think of something special to do for myself. I cooked an early father's day dinner tonight so I can put myself first tomorrow. It is a big change of mindset for me to do something for myself on my birthday instead of expecting my family to do it for me. It feels like going in the right direction, if only I can figure out what I want to do.

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).

Parkinson's specialist

The Movement Disorder Specialist we saw in Charleston has moved to Washington DC to work for the FDA, so John's local neurologist recommended a specialist in Atlanta, which is a lot closer. We saw him yesterday and were not happy with him.

It was an interesting experience for me because the doctor was taking the approach that John's Parkinsonism was mild and he didn't yet show all the signs of Lewy Body Dementia. John's response was to argue with the doctor that he is more impaired than the doctor realized (John had been working on his Social Security Disability appeal so he had been thinking in those terms). For me, having John acknowledge what I'm finding hard outweighed having the doctor ignore it. The doctor just didn't seem to be interested in subjective experience, only in the measurable symptoms. He made a big deal of how smart John was (having read the neuropsych testing report from May) as if he didn't expect to see Parkinson's patients who are smart. I finally said if John was 80 we would think he was doing great but this isn't what we expected at 63.

At the beginning of the appointment a nurse took John's vital signs and medication information and then sent him back to the waiting room. The doctor himself came out to the waiting room to get John and introduced himself to John. But the odd thing was that the doctor didn't acknowledge my existence when I got up and walked with John. Initially when he asked John questions I didn't speak up because I thought it important for him to see where John got confused. But he never did ask me for my perspective, though I did start giving it anyway.

Disability insurance interview

John got disability retirement from his job, and he had private disability insurance, which has come through. He has also applied for Social Security disability, but we don't expect the first word on that until December.

Today a representative of the disability insurance company, Met Life, came to our house to interview John. For two hours! It was a friendly enough interview, but exhaustive about the history of John's illness and the work he used to do. The representative also took pictures of John. The representative seemed to get that the biggest issue is slowness, but I still worry that John doesn't look that disabled. John did have to struggle a little getting in and out of a chair. But he made a big point of how he his thinking is not impaired. He did get confused a few times but nothing that would strike the average person as really odd. I hope that the insurance company doesn't try to kick John out of disability coverage. He only gets two years coverage, until he is 65.

impaired but not demented

I just ran into an old article in the New York Times about the needs of people in the early stages of Alzheimer's disease. It seemed to me applicable to Lewy Body too--what can someone do in the years after they are impaired but before they become incompetent? It stresses support groups and advocacy, which don't interest John. What I wish he would do is go through his stuff, figuring out what is worth keeping and writing down the stories behind family things. I'm working on hiring a student to help him with organizing one or two afternoons a week, but it is hard to get John to tackle the things he has too many of (from clothes to videotapes).

social security disability

Yesterday was actually a productive day. I invited a new colleague to supper and my son got home from Mexico in the evening, so I stayed busy until bedtime.

I want to summarize what I have learned so far about Social Security Disability, because I had trouble finding the information when I needed it.

The biggest mistake we made is that John didn't apply for Social Security right away. He was advised to wait until his disability retirement from his job had a chance to go through. That was a mistake because John is 62 and so eligible for retirement benefits. Disability benefits are based on the date you become disabled, but retirement benefits start with the month after you file. So if John had filed in May he could have received benefits starting with June (received in July) instead of August (received in September). And our kids would have received benefits for those two months as well (under 18 or 18 and not yet finished high school).

John filed for disability at the same time he filed for retirement. He gets retirement right away, and if he is approved for disability, he will then get a check for the difference. The person who took the application said that we should hear whether the disability application is approved in about 4 months. I know that most people are turned down and have to appeal, but the person who we talked to first said that it isn't as hard to get disability when you are close to retirement age so we might be lucky.

The disability form for Social Security was actually simpler than the one for John's job as a state employee. We listed the diagnoses as Parkinson's and Dementia with Lewy Bodies. The person taking John's application was very happy with the list of medications we brought on a separate sheet (which I had prepared for doctors) including not only amount and frequency but also which doctor prescribed and for what problem. I brought the Lewy Body Dementia brochure from the LBD Association and that was also well received--the person taking the application said that would save the people evaluating the claim some research.

I had been advised that filing online could be faster, but we liked going to the office. We did not experience long waits and the person taking the application helped us understand the options and what would happen when. He had actually taken a course from John about about 15 years ago and remembered him. John was having a good day, which I'm not sure was too the good, but I did point out that one of the characteristics of Lewy Body Dementia is that the impairment is variable. The person taking the application didn't ask questions about John's health, just about our financial situation. He had access to an amazing data base in which he could even look up John's military service (they boost the income credit for years in the military).

All the people we dealth with were friendly and seemed to be trying to be helpful, which was quite different from what I had expected.

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.

retirement and disability

I thought John might do better once the semester was over (May 12) and he was no longer working, but it didn't get any better. He was busy moving out of his office and trying to clear out his home study. Now that we are on the first part of our trip he seems to be doing better.

When I first raised the possibility that he had Parkinson's, I asked him if that that was the case whether he would want to retire early so he could enjoy more of his retirement. He said he wasn't ready to think about that. Within a month he was talking about retiring on disability but continuing to teach one or two on-line courses. As we explored what disability payments he might be eligible for it became clear that it was better not to work at least the first year in order to qualify for disability. He also felt he got much worse the first month after diagnosis and then stabilized once he went on Sinement. So now he has given up on the idea of being able to teach on-line, though he does have a research project he wants to continue to try to do. I hope he will be able to enjoy working on that, whether he can complete it or not.

I found it surprisingly hard to find good information about the best tactics to take when applying for disability. John first filed for disability retirement from his job. He was a state employee and the state rules are that you are eligible for disability if you can no longer do your particular job, even if you can still do other kinds of work. He started the process of filing early, though it took a long time before all the paperwork went in. The personnel office told him it was ok to file while he was still working, that they understood that people held on longer than they should. The state disability pays him his retirement as if he had worked until 65, but he has less than 20 years in the system (28 years are needed for full retirement) so it isn't that much.

When he first was hired full time for the state he had signed up for private disability insurance (at that point it was with Traveler's insurance company). We had half forgotten about it but it was a deduction from his pay and was still in effect. We got the paperwork for that sent in just before we left on this trip. If that is approved it will pay him something like $600 a month until he is 65.

The next step will be to file for Social Security Disability, which would particularly help us because we have two kids still in school (one is 15, one turns 18 in June). The standard is stricter for Social Security Disability, you need to not be able to do any job. Our local neurologist said that it is easier to get with Parkinson's than with other disease and that he will support John's case. The Parkinson's specialist said expect to be turned down and have to get a lawyer. I've seen a number of people in on-line Parkinson's group say they got it the first try. Our lawyer recommended a lawyer who specializes in Social Security Disability and I may see if I can pay just to meet with him and get suggestions before we file for the first time. I don't want to hire the lawyer to do it from the start--we can do the first applicaiton and then if John is turned down maybe we give it over to a lawyer.