Thursday, August 28, 2014

Update on John

John is more unsteady on his feet.  He can still walk from the house to the car, but with two people to keep him upright.  What scared me most though was that he couldn't eat lettuce, had to pull it out of his mouth.  He said it wasn't a swallowing problem but not being able to move it around his mouth to chew it.  But if his tongue muscles are going, the swallowing muscles are too.

Elizabeth and I and John's wine friend David and Deborah King sat around after his birthday dinner (after he went back to the nursing home) and talked about what he soon wasn't going to be able to do.  I encouraged David to move towards having the wine dinners in the small dining room at the Downs; he said sometimes he has been scared John would fall when he was helping him in and out of the car. Elizabeth found a thermostatic control that will work for John's wine refrigerators, instead of his system of adjusting timers as the temperature of the basement changes.  We also talked about the swallowing problems, which David has seen, and that John's drinking fine wine would be over at the point where he has to have thickened liquids.

I brought the first two points up with John over the next several days.  He said that he didn't think a new control system for the refrigerators was needed this year, though he accepted my saying it would make me feel better.  He said David hadn't said anything to him about being uncomfortable about helping him in and out of the car. I didn't discuss thickening liquids--he would just say he isn't having swallowing problems.

Elizabeth and I talked about what might happen while she is away at school. We agreed that he is getting close to the point of losing quality of life and would not go to the hospital and probably not get further antibiotics if the first ones used don't work (no therapeutic escalation). She wants to come home when something happens, and we will try to have the funeral within a week.

It hurt to feel her pain facing such difficult things.  I also feel so torn between my own instinct to come to terms with and plan for the end and John's denial that he is losing quality of life. I find it hard to feel my feelings when I know he would tell me that they aren't accurate.

Thursday, April 03, 2014

two sorrel recipes

Beef Shanks with Sorrel

about 2 lbs of sliced beef shank
scant 1 tblsp of the fat of your choice (I used bacon fat)
1 medium onion, halved and sliced medium thick
salt and pepper
1 tblsp ras el hanout seasoning
1/2 a preserved lemon (more or less as you prefer)
dried figs--either 8 small whole or fewer cut up
1 1/2 cups beef broth (if using canned you may want to use half broth, half water)
4-8 ounces sorrel leaves

Preheat oven to 325.  Sprinkle the beef shank with salt and brown in the fat in a dutch oven or oven-proof skillet.  Add the onion before removing from the heat so the onion has a chance to brown a little.  Remove from heat and sprinkle with pepper and ras el hanout seasoning.  Add the preserved lemon, diced, and the figs if you want to leave them whole.  Add the broth or liquid, which should come at least half way up the shanks, and bring to a boil.  Transfer to the oven, covered, and cook for two hours at 325.  Remove carefully from the oven, remove the shanks from the liquid, and immediately stir the sorrel into the liquid.  Sorrel will wilt down to almost nothing the way spinach does--it may work better to stir it in a large handful at a time.  Stir in figs if you are using them cut up.  Shred or cut up the meat from the beef shanks and add it and the marrow back to the liquid.  Reheat if needed and serve.

And for the leftover sorrel:

Sorrel and Celery Root Soup

1 quart chicken stock
2 small or 1 medium celery roots
4-8 oz sorrel leaves, cut up if large
some leftover chicken, diced
salt to taste

Peel and chop the celery root, then cook it in the chicken stock until soft.  Put the celery root pieces and some of the chicken stock in a blender or food processor and puree.  Return to the pot with the rest of the stock and heat to simmering.  Remove from heat and stir in the sorrel leaves and chicken meat.  Adjust seasoning and serve

Thursday, February 27, 2014

Lactofermented Cranberry Relish

I love this in my smoothies.

4 cups organic cranberries, picked over
1 apple, peeled and cut up
6 dates, diced
1 knob of ginger, diced
1/2 cup whey or liquid from live culture sauerkraut

Process all dry ingredients in a food processor until chopped fairly fine.  Add whey and process until well blended.  Pack tightly in a quart jar, leaving at least an inch of head space, and hold the solids under the liquid with a weight if you have one.  Store in a cool place for a week or more to ferment, then refrigerate.

Sunday, February 09, 2014

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.

Sunday, January 19, 2014

letting go of control

I haven't written here about personal struggles in a long time, but I have a feeling that this current one is going to be complicated enough that it will be useful to have a record and perhaps find people who want to talk about these issues.  The challenge I face is letting go of some control, but control makes me feel safe.  This is a challenge where I do want to learn to do it differently.

The immediate situation is that John has started on palliative care/hospice.  From the beginning six years ago his disease has been one that has no cure, nothing but treatment for symptoms.  But we settled into trying to maintain his quality of life.  I researched the disease and made suggestions.  Sometimes he refused, sometimes he resisted but then when he tried it told me I was right.  In the last year his decline has been faster and he has also been much more resistant.  When I asked the doctor about palliative care, I didn't expect that John would qualify for care funded by hospice, but he did.  What hospice means to me is a transition from him living with the disease to dying of the disease, though I say that with the expectation that he has 6 months to a year to live.  But I also realize that their job is to lead us through this process.

Today in church the sermon was about John 1:29-42 and the preacher noted that the first words Jesus says in John's gospel are "What are you looking for?" (John 1:38).  The sermon called for us to listen deeply to the answer to that question inside us and trust the journey.  I felt that fit with my thoughts about letting go of control. But where I got struck is that my first answer to what is my deepest yearning is “safety.” That comes from childhood experiences of abuse and my first father’s death in a car accident, which also makes me feel that God doesn’t protect us. So I had settled into an approach that the closest I can come to safety is trying to see what is coming down the road and figure out how to manage it as best as is possible. That kind of control has worked fairly well for me, so it is very hard to think about letting go of it even partially.

The letting go of control I imagine is letting go (though not completely) of my role as researcher and advocate.  I initially pushed hospice to arrange for John to continue physical therapy, though it turns out that his physical therapist was already thinking it was time to give up.  One motivation for pushing that was that it was important to John, but it was also a way of maintaining my role as the one who fights for what John needs.  I realized I need to some extent to let Hospice be the ones who know what John needs.  But then I have to face my own powerlessness instead of hiding it behind a front.

John is clearly continuing to decline--today he called me to put on his briefs for him, which he has been stubborn about doing himself.  He leans on my arm heavily when we go out, but he does still get out.  He doesn't seem like someone who is dying at this point, but he is increasingly vulnerable as his autonomic nervous system fails.  And he has been clear all along that he would like to die of something else before his quality of life is gone.

Saturday, November 23, 2013

Lamb Kofta

leaves from two sprigs of sage
1/4 cup pistachios
1/4 cup golden raisins
1 teasp ras el hanout seasoning
2 teasp zaatar seasoning (or 1 teasp sumac)
1/2 teasp sea salt
1 1/2 lbs ground lamb

Chop all ingredients except the lamb in a food processor.  Add lamb and process until combined and shape into elongated burgers.  Grill until medium rare (on skewers if you want, but they work fine without).  Serve with yogurt.

Saturday, September 14, 2013

Paleo Chutney

2 lbs apples, peeled and chopped
1.5 lbs pears, peeled and chopped
1 cup cider (I used frozen cooked fresh figs in their liquid instead)
1 cup golden raisins
6 prunes, chopped (because that was how many I had)
1 cup cider vinegar
1 inch square of ginger root, or more, chopped fine
1 teasp salt

Cook apples, pears and cider until they soften some.  Add raisins, prunes, vinegar and ginger and cook until thick, stirring occasionally at first and more often as the water boils away.  This should be safe for boiling water bath canning because the vinegar provides enough acidity even though it doesn't have sugar.