Friday, February 18, 2011


For awhile, I was doing the household cooking.  I enjoyed meeting the challenge of finding things all three of us would eat.  It was good to bond over food.  I started to burn out on cooking (no pun intended) about the same time I started eating Ensure for three of my meals.  That sounds funny if you don’t realize I eat six meals a day, to maintain my weight. Carol is a good sport about doing the cooking.  It helps that Lena will occasionally cook pasta or something, if she is the only one hungry, especially since she has decided to be vegetarian.

Carol was doing the Costco runs, and I was going to the grocery store on the bus pulling the food in a small suitcase on wheels.  I can’t do that any more because of my walker.  Carol remembered we could order food online from Safeway, so we are doing that now.

I was doing the laundry.  The washer and dryer are in the basement.  I can get down the stairs but not carrying a bin.  The compromise is Carol doing her and Lena’s laundry, and me changing clothes downstairs and keeping the dirty ones there and washing them there.

I can still vacuum except our vacuum is on the fritz.  It is taking us awhile to find one at the thrift store, because Carol prefers the canister style being more manageable.  I can also clean the bathroom.

The latest about my sister is that she plans to take the train from San Francisco to Boulder.  She convinced me briefly that she would be all right traveling by herself, even though she wanders mentally, because her foot hurts so she can’t get far from the station.  Then I remembered if she had an anger outburst she might wind up being put off the train in the middle of nowhere. 

My dad asked if I could go with her.  I huddled with Carol and my support group, torn between the facts that I love train trips and that being with my sister is stressful.  I said I handled her pretty well on the way home from Nicaragua.  Carol reminded me the only reason that worked was because there were three of us.  I decided my compromise would be I would go if my brother Tom also went, and Joan agreed to take something for the anxiety of travel.  My dad, who is paying for the trip, said he thought that was overkill, and that my brother agreed to go thinking he could handle it.

The present moment is cold sunshine.

Friday, February 11, 2011

No One Pities me This

One part of having HD is that I have to eat constantly to keep from losing weight.  I found cramming it in too much can cause me to lose it, which doesn’t help the problem.  I am using Ensure for three meals a day.  My friend Rose, who is a social worker, told me I could request that my doctor prescribe that so Group Health would cover it.  I did, but heard GHC has to decide whether it is medically necessary to see if they will cover it.  Through the magic of bureaucracy I am still waiting for an answer a month later.

I had to give up popcorn because it is hard to swallow, which  was a loss for me, because it was one of my favorite foods.  I have been choking less, which Carol thinks is because I lowered the level of the tetrabenazine.  The constant choking had me thinking I should move into an assisted living place.  Then I remembered some advice my brother had about keeping my cell phone close to me.  Now I know I can call 911 I I have a problem.  I still can eat everything from bagels to taquitos.

Last week I forgot to thank the people who helped me move:  Carol, Rose, Beth, Dick and Mary.  My friend Richard provided the truck, wanting to thank me for taking him to some concerts on my comps.

I think I also forgot to say the Nursing Home my sister is interested in has a HD ward.  The update is that she contacted them and found out they have an opening.  She is taking medication that is supposed to help with the irritability.  My father, who is a psychiatrist, thinks it would help better at a higher dose.  Joan says the higher dose makes her too sleepy.  Rose also suggested she see a doctor who could suggest a different medication.

Some good news is that Carol’s daughter Lena wants to be part of my care committee and lists Huntington’s disease and volunteering when I asked her what her current interests are.

In my care committee we had a discussion about naming my walker, since I said it is my best friend.  I suggested Red, which is its color.   Carol asked, how about Slick, because it is cool.  But I countered  Slick sounded pretty scary when you have trouble keeping your balance.  So we agreed on Speedy.  Apparently I speed along pretty well with it.

The present moment is entertaining.

Friday, February 4, 2011

My sister threw a phone

In my last post I was talking about my sister’s anger issues.  A few days ago she threw a phone at her caregiver, Pamela, and spit on her.  Pamela called the police who took her to an emergency room.  A social worker calmed her down.  When Joan got back to her house she threatened Pamela.  The next day, Pamela had Joan evicted.  My dad called me asking if I knew of any place available here.

A few months ago, my sister  had said she was bored in Novato and wanted to move to Seattle to be close to me.  I had always thought I wanted Joan close, especially since I feel I owe her something because she visited my mom in the nursing home every day for five years.  Carol pointed out that having Joan here would be stressful for me and stress affects my health.  My friends Alice and Dinah agreed with Carol.  At that point my father confronted Joan’s plan to move telling her nothing would be different in Seattle.

This time when my father asked about Joan moving here I told him no and explained why.  Carol said if Joan moved here, she, Carol, would wind up having responsibilities for my sister.  She reminded me we should make a decision as a couple.

I asked my father if Joan could go to a psych hospital there.  He says the local county one doesn’t admit people with HD.  That seemed ironic since we often need mental health care.  My friend Dick pointed out that psych hospitals are oriented toward curing people, whereas HD has no cure.

I knew of someone with HD who had done well at Western State Hospital, which admits PHD’s and has experience with us.  I asked Carol if she would be all right with me suggesting that since it is at quite a distance, so I would visit more like once a week.  So I passed that along to my stepmother.

Meanwhile, Joan decided she would rather be in Boulder, which has a nursing home that specializes in HD.  My brother lives there and wants her there.  She has to find out whether that place has space and what the process of being admitted would be.  I talked with my brother about needing to have boundaries my sister.

The present moment is playful.