This and That

    As Dick and I were coming from the gym, I said I was down two pounds, which isn’t good.  He said he was down two pounds, too, which IS good.  Perspective is everything.  I said I wasn’t sure how to get mine back up, since I feel like I eat constantly, as it is.  It dawns on me I could add ice cream to my smoothies.
    Carol helped me figure out how to request a ride on the web site.
    I had stored a glass of smoothie in the refrigerator.  I spilled it, when I was getting it out, which made a mess.  I told Carol I thought I should stop making them and use Ensure instead.  She thought I was overreacting, and could solve the problem by putting a lid on it.  I wound up agreeing.
    Carol gets to hear, “You were right.”  She managed to program the universal remote so I can play our dvds on the nice relatively big TV.  It is easy to get discs in and out.  I am unafraid of using water bottles in that chair.
    The present moment is cloudy.

Lunches

1. My care committee did some brainstorming about my transportation issues.  They mentioned I could change my lunch dates with Mary to dinner dates.  That didn’t work out, because we have conflicting commitments.  Mary said she was willing to pick me up and take me some place at lunch time.  We just went to Burgermaster.    The web site Alice set up allows me to request rides.  Alice sent around a letter letting people know about my general need.  I haven’t tried out the system yet, but will soon.     Carol said my blog missed the fact she was going to try to figure out whether she could make the universal remote work with our dvd player.  I think she was unsuccessful, this week. The present moment is mimosa blossom sweet.

Enable screen re

Spills

    Last night I spilled a bottle of zoloft with 14 pills in it.  Fortunately I got them up off the floor, so Pearl the dog isn’t having any unexpected mood changes.  I feel apologetic about having to ask Carol to add counting out my pills to her tasks.  She is a good sport about it.

    Since I’m not able to get to the bus, I am home a lot more than I had been.  Carol had picked up a dvd series of Helen Miren at the BBC.  They go back to 1974 and include some amazing range.  

    Carol thought it would work for me to watch them on our computer.  I had spilled some water on the machine, fortunately without doing any damage.  She suggested I keep the bottle on the other side of the table.  I have an irrational fear I am going to forget and bring the bottles to the computer side.  More rational is that I might hurt the drive getting disks in and out.

    We have a dvd player someone gave us along with our TV.  I hired our friend Michelle to hook it up, since neither Carol nor I knew how to do it.  Michelle had trouble getting the dvd remote to work.  Carol looked at the instructions and they indicated we should be able to use the TV remote to operate the dvd, but it didn’t work.  She also bought a universal remote, and programmed it, but it won’t make the dvd work either.  Carol has an individual dvd player that should work once she finds the cord.  She has put a lot of effort into this problem.  Meanwhile, I am watching Law and Order on Netflix.

    Carol also turned me on to The Hour, a TV program about the beginning of the BBC.  It is great.  I’m caught up on it.

    The present moment is cloudy.

Falls

In the past week, I have had three falls, which is concerning.  One was as I was getting off the bus, when I turned around to say goodbye to the bus driver and forgot to pay attention to my hands on my walker.  Another one was at a Storm game between where the usher took my walker and my seats.  The third one was on my way to Group Health to pick up some medication.  I overshot the bus stop where I was supposed to change buses.  I was in a rush, trying to make the connection.  Carol reminded me I can always wait for another bus.

I had been thinking, when I got to the point that I couldn’t use my walker, I would switch to a scooter.  My social worker told me the controls can be made less sensitive, so my movements wouldn’t be a problem.

Carol pointed out that I have a bit of disorientation that would get me into trouble faster, if I was moving faster.   She also said scooters require curb cuts, which aren’t universally out there.

I have stopped using the bus, since I can’t walk to the stops.  I am going to miss that independence.  Carol told my I qualify for the Access van, because I can’t use the regular bus.  I requested the paperwork, and it turns out to require two forms.  It is another bueurocracy that is going to take some time to navigate.  I understand the vans sometimes take a long time to arrive, since they pick up other people first.

My friend Dick is on an enviable trip to Italy, where he is in touch by email.  When I emailed him about stopping taking the bus, he responded that he is willing to negotiate rides to the gym together.  That is great, because I love getting my endorphins up.

I had to cancel my standing lunch with my friend Mary, because I’m not sure the Access van will be able to get me there close enough to her work schedule.  Fortunately, we also see each other at our monthly writing days.

The present moment is cool.

Dancing

Good news is that I heard from MaryLee Lykes, a fun dance teacher, that she can accommodate me with my walker in a line dance class at a senior center near our house.  I tried it out and found I could indeed adapt the steps so I can do the dances with my walker. Line dancing is one of my favorite kinds of dance.  It is nice to be back to it.

The present moment is celebrating.

An Issue

Carol has started going to a support group for caregivers, which is great.  She came home and told me an issue had come up that if the caregiver needs to be taken care of for a period of time (for instance because of a medical issue), the person with Huntington's, depending on how late in the disease he or she is, might not be able to take care of the caregiver.  When you look at the issue long term, it’s hard knowing that the HD person can’t be there for the caregiver in those respects. The lopsidedness of it is difficult. The caregiver spends all this time taking care of someone knowing it likely will not be reciprocated.  I said I was sorry about that.

She later told me she was frustrated that my only response was “sorry.” She did not see that as a conversation about what happens long term, how do we deal with the issue as a couple, how does she deal with the issue in order to take care of herself, because clearly that responsibility will fall on her? And how does she get me to communicate, i.e. have an actual discussion?

In the later conversation I said I was sad about not being able to take care of Carol.  She pointed out she is going to have to have another hip replacement at some point, and will need her friends to take care of her.  This makes it very important she keep up with her friends.

The present moment is sunny.

Good Suggestion

Good Suggestion

As part of the brainstorming at my Care Team, Louise suggested hiring a housekeeper.  Carol and I figured out we could afford to have someone come every two weeks.  Our friend Mary recommended Silly Sisters.  I was remembering there was a Supreme Court nominee who got in trouble for hiring a housekeeper under the table.  This way, Carol can serve.

I gave Carol a steam cleaning of our carpets as a Christmas present.  It took this long to get things organized enough for us to have everything up off the floor.  I hired a guy from the gay business association.  He gave me a discount for that reason.  I said, “Is that the ten percent for the ten percent?”

The house looks nice.

We saw KD Lang at Zoo Tunes.  A fabulous show on a perfect evening.

The present moment is soothing.