Orange Marmalade Cranberry Sauce

I only have one oven and I'm doing Thanksgiving (just for four) single-handed, so I'm cooking up a storm the day before Thanksgiving.  I got inspired and made a cranberry orange marmalade, starting from this recipe but with more cranberry.  I wanted something relatively low sugar--this is not a recipe intended for canning--but with fairly long cooking it did set.

Orange Marmalade Cranberry Sauce

2 good sized navel oranges
enough cider or apple juice to cover
2 cups sugar
1 bag cranberries

I removed the central pith and seeds from the oranges and cut peel and flesh together into thin slices.  I packed them down and poured cider over them to barely cover.  I put the bowl in the refrigerator overnight, as is recommended for marmalades.  The next day I measured the fruit and juice (I had 4 cups) and added half as much sugar.  I brought it to a simmer, added the cranberries, and simmered for perhaps an hour and a half. 

I thought it was going to have the bitterness that some marmalade has (which I like ok), but even the orange pieces that include the white part of the peel are not bitter.   It made about 3 cups.

child sexual abuse at Penn State

I'm very caught up in the Penn State story, though not to the point of having the stomach to read the indictment.  It seems to me very clear that children could have been saved from harm, and instead the program was protected.

To me, the legal issues are important because I think those of us at colleges and universities should know a lot more about our legal responsibilities.  I have seen contradictory information, but it looks to me like this article is based on actual research into the details.  Pennsylvania law mandates that school personnel report evidence of child abuse, but that reporting can be up the chain of command.  School administrators are mandated to report to the police, and they are the ones who have been indicted for failing to report.  That is not the case in most states, where school personnel are mandated to report directly to the police or child welfare workers.

So Paterno technically did fulfill his legal responsibility to report up the chain of command.  What is left is the ethical responsibility--harm was still being done, and he didn't act to stop it.  There is a really good article here that focuses on the comparison with the Catholic Church.  And an interesting story about the reporter who has been reporting the story for 6 months.

But the best thing I have read addresses the victims: Rick Reilly on the Penn State Scandal.

update 11/12.  A good story about our ability to act.

caregiving and having a life

What I find hard is becoming a little clearer to me as I recover from the stress of Friday's trip to the emergency room.  I don't have the energy or attention to do much this weekend and I feel low.  Part of it is that I'm now worried about my plans to go to a professional conference next weekend.  But looking at my feelings more closely, I realize that nothing seems important to me.  And yet this isn't a short-term emergency where I can put other things aside, this may be the next 10 years of my life.

Emergency room visit

Friday morning a few minutes before I headed into class I got a phone call from John.  He was crying so that I couldn't understand what he said, beyond that he had fallen.  I grabbed a film for my teaching assistants to show and headed home.  Luckily I had gone in very early so my car was right in front of the building.

I found John sitting on the bench in the bathroom, with a mess on the floor and in his clothes.  Trying to take his clothes off he fell and hit the side of his face against magazine table.  He had a lump and a small scrape, but he wasn't in pain any more. I helped him get the rest of his clothes off and get in the shower and I cleaned up the floor.  I left the clothes to deal with later and went back and taught the second half of my class.

When I got home again I ate my own lunch and then cleaned up the floor and helped him get dressed.  I made him some lunch and then he discovered he couldn't eat it because it hurt so much to chew even something soft.  We decided that had better be looked at, particularly since it was Friday afternoon, so we went to the local urgent care center.  The wait there is usually very long--this wasn't too bad in comparison.  The nurse-practitioner said he needed an xray.

I explained that he couldn't lay flat on the table because his neck is bent forward too much.  It turned out they planned to do the xray sitting up and the problem was he couldn't turn his head to the side very far.  Eventually the technician had him sit on a stool and put his head forward on the table.  He wasn't very stable that way.  I suggested I could robe and hold his shoulders and to my surprise the technician went for that.  The technician said the xrays didn't show anything obvious.

We waited a while for the xrays to be read at the hospital.  The nurse-practitioner came in and said John would need to go to the hospital for a cat scan but it looked like his jawbone was shattered and he would need surgery.  We were surprised given what the technician had said and John's lack of pain, but we headed for the hospital, with a brief stop to get me some food and John a milkshake.

They took John back right away, though then we waited a while for the doctor.  The nurse said the radiologist hadn't seen much, and we began to realize that the nurse-practitioner might have misunderstood the report.  But they did want to do the cat scan.  After another wait they took us back and again they included me in the process of positioning John.  This time he was stable by himself and the technicians just asked me to go to the booth with them each time they took an exposure.

Eventually the doctor came and reported they didn't see any break at all, it must be just a bruise that made it hurt so much.  He gave John a  prescription for pain medicine and we got home about 8 pm.

I have had the principle "avoid the emergency room at all costs," but this was actually a good experience.  We weren't there much over two hours, and that on a Friday evening.  They were much more willing to let me accompany John for everything than I had expected.  I don't know if it was just because they saw he was on Aricept.

When we got home I made him some carrot soup, but told him he would have to ask Paul to help him get in his pyjamas.  Today he has not dared try eating anything that requries chewing.  I'm discouraged by the strain.  Can I really go away next weekend?

I had a useful meeting with an Elder Law attorney yesterday, so let me sum up what I know.

If you don't want to spend all your savings on your spouse's care, it is worth seeing an elder law attorney who specializes in Medicaid at least 5 years before your spouse needs nursing home care, particularly if your spouse does not have long term care insurance (or might run out).  The rules are very complex and vary a lot from state to state.

Medicare does not pay for nursing homes beyond a few months of rehab.  Medicaid will help with the cost of a nursing home, but only after most of the savings of both spouses have been spent, which is easy to do when a nursing home costs $5,000 to $10,000 a month and some people with dementia live in a nursing home for many years.  My husband's 100 year old aunt has been in a nursing home for two years and is doing well--in a wheelchair but still mostly competent and enjoying going out to a restaurant for lunch.  Her long term care insurance lasts 4 years, of which she has used close to two.  When that gets close to running out she will have to move to a nursing home that takes Medicaid, but spending down her savings and applying for Medicaid should be fairly straightforward.

It isn't so straightforward if you are married.  Medicare treats the two spouses as a unit--it doesn't matter if assets are in one name only (even a prenuptial agreement won't allow one spouse to keep separate funds).  The well spouse is allowed to keep the house and its contents, one car, and half of the couples savings up to around $100,000.  All the rest of the couples's savings must be spent on nursing home costs, including in many states the well spouse's retirement savings.  I have a lot more than $100,000 in my IRA and 403b retirement savings accounts.  If I didn't live in South Carolina, I would have to pay the early withdrawal penalty (I'm only 56 so I could easily be under retirement age when I needed the money) and spend down those funds on my husband's care before we could get Medicaid help with the cost of a nursing home. 

What about my retirement years after he is gone or money I had hoped to pass on to my children?  About the only way to keep more than the allowed amount for myself is divorce.  I do have some options for my children if I do it now.  Medicaid looks back and counts any money given away up to 5 years before the person applies for Medicaid.  I can give money to my children or set up an irrevocable trust for them, because I am at least 5 years away from needing help, but if I did that within 5 years, Medicaid would not pay for a number of months equivalent to what was given away.

Be careful also if you expect to inherit any money.  If my mother dies before my husband, the inheritance I get from her must be spent on his care before he would be eligible for Medicaid.  There may be a way to fill out legal forms to refuse the inheritance now, so it goes to my kids instead.  But I have to do that before the five year look-back or Medicaid would count it as a gift.

Reflections for my 35th Reunion

Here's what I wrote for my 35th college reunion (which I don't plan to go to):

My kids are in college—it isn’t yet clear what their life choices will be. I’m still in the same job (over 25 years now). I built a program, Science and Technology in Society, that is holding fairly steady, but at a state university in this economy, holding steady is the best I can hope for. I spent 7 happy years doing triathlons, my longest one a half-ironman, but I’m not finding room in my life for the training any more.

The big change in my life is that my husband (now 66 years old) was diagnosed with Parkinson’s disease and the beginnings of dementia in 2008. His disease is progressing slowly and he can still mostly take care of himself, but I take care of almost everything else. It is far from the equal partnership marriage I signed on for. I managed renovating a house for his future needs and we moved--that was my major focus for a year and a half. The past year and a half has focused on my daughter’s college search process. I still enjoy my job, but I haven’t figured out how to focus on my own research the way I had hoped to when I reached empty nest.

I haven’t made peace with the lack of control yet. I understand that there is nothing we can do to stop my husband’s slow decline, but it is hard to wrap my mind around that and stop researching the disease. On a day-to-day basis the difficulty is how often I have to drop what I might have planned to do and instead help my husband with something or take him to a doctor’s appointment or do something for his 100 year old aunt, who lives in our town. And this could easily go on another 10 years. It is the task I have been given and I’m good at some of it. But I mourn my hopes for in this stage of life.

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.