More Damage

    On Christmas Eve, I broke the universal remote.  We had to run the dvd player manually.  I had a moment asking Carol if I should stop playing dvds.  She said no.
    I forgot to mention another friend Barbara has a standing date taking me to my hair cut, important for my sanity.  Also Kathy is doing pharmacy runs for me.  Very helpful,
    The present moment is cozy.

More Memory Issues

    Since Carol sensitized me to my memory issues, I asked her to start paying my bills, and keep track of things like tax documents I don’t want to lose.  I am lucky to have a partner I trust who is willing to do that.
    Also, another friend Nancy has started having a standing date to go to the gym with me.  She responded to my wish list on the web site Alice set up.  I thought the web site would let me know when I had a message.  It didn’t, but Alice noticed and passed it along.  The combination of the formal and informal process worked.
    The present moment is surprisingly sunny.

Changes

    I have been having some unpleasant side effects with a supplement I was taking, creatine, so I stopped it.  That happens to be the one I have to drink a lot of water for.  It’s a relief not to worry that I will forget to drink enough water with my memory issues.  Nice to just drink when I am thirsty
   The present moment is peppermint flavored.

Memory Problems

Carol tells me she is observing some memory problems, such as leaving the front door unlocked, and the basement door completely open after letting Pearl out.  I had my credit card phished by a phone call that sounded like my company but wasn’t.  I had to cancel that card and get a new one.  I had been paying my bill online.  I am afraid I would pay on the cancelled one.  I asked Carol to do that as well as write out the few checks I still do by hand.  She said she would, which will be more work for her.  I sure am lucky to have her help.

The present moment is cloudy.

Arguments

I forgot to mention on Halloween, I was supposed to keep Pearl in the bedroom, while Carol gave out candy to the kids.  I had trouble operating the TV and had to ask for help several times.  Carol got frustrated because the doorbell would ring and she had to keep going back and forth between me and the kids. She finally realized she was not going to be able to pass out the candy and help me at the same time. She gave up passing out the candy and had me do it instead. She was disappointed because it’s something she enjoys doing and was unhappy that she couldn’t have one night of uninterrupted time to participate in Halloween.

Recently, we were going to see a performance in Kirkland.  It was dark and rainy of course. Carol had come from work in rush hour traffic already and she found the driving to be difficult.  I said we could go home, but we continued.  She said she didn’t like being the driver all the time.  I said I wished I could do it.  My sense of direction isn’t good.  I can’t see the street signs well.  I can’t read maps. I didn’t get directions. Carol ending up feeling like the chauffer.  I responded to her expressions of frustration by saying, “I know” repeatedly.  She told me that wasn’t very helpful.

We had had dinner together before the show.  Carol had been talking about her work.  I thought I had been being supportive.  She said she didn’t feel like I was actually interacting.  I argued back a little, saying I thought I was being present.  She said, “When do I get to say how I feel about my experience and have you accept it?”  I told her I was sad there has been a loss in my listening ability, because that used to be a strength I prided myself on.

The present moment is full.

Carol and Lena Away

Carol and Lena are leaving early in the morning for a week in Orlando.  Carol will be going to a conference.  Lena gets to soak up Disneyworld on her own.  Nice she is old enough to do that since Carol is not a big fan.  I have a mixture of nervousness and enthusiasm about being alone with Pearl for a week.  The positive feelings are supported by the fact I have standing dates with Dick and Liz, dates to see Rickie Lee Jones and Curtis Salgado with Richard, and reminders from Louise and Richard I can call for help.

Carol noticed Pearl’s tail knocking over the remote.  That might explain the damage.

The present moment is relaxed.

Ice Cream Worked

Adding ice cream to my smoothies brought my weight back up.  It took three weeks, so there was a point where I thought I should reduce the number of times I go to the gym.  Carol convinced me not to do that.  She was right.

I spilled an infinitesimal amount of ginger ale across the table, so it touched the computer, fortunately, without doing harm.  I moved the water bottle to the coffee table.  I have to take in a massive amount of fluids because one of my supplements can harm my kidneys.

I found slicing into the chicken breasts for the stuffed recipe we liked challenging, so Carol suggested layering tenders.  Lena finally tasted it since she added chicken back into her diet and enjoyed it a lot.

The universal remote stopped working.  Carol thinks I may have dropped it and loosened the batteries.  That makes more work for her to reprogam it.  I apologized.  Meanwhile I can turn on the TV the old fashioned way.

The present moment is colorful.

More Spills

   Even though I stored my smoothies in travel coffee cups, I have spilled them twice.  So I changed to a water bottle with a built in straw.
   I spilled some ginger ale from the far side of the table and still got a bit on the computer.  That made me nervous.  Fortunately, there was no damage.  I moved the bottles to a coffee table.
    I am back up one of the pounds I had lost the week before.  Using ice cream helps.
    I realized I could watch old movies on demand.  I started with Blues Brothers, which I had somehow missed.  Very entertaining.
    The present moment is cool.

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.

New Web Site

    One of the members of my care team, Mel, had experience with a web site a friend off hers had used coordinating volunteer requests, when she was dealing with cancer. She passed the web site information to another member of the group, Alice, who has the computer experience to adapt it for me. Happily, Alice has just retired, so she had time to do that. If you wants access to the web site, you can contact her at alicebloch@comcast.
    I’ve been having trouble coordinating stuffing the chicken breast recipe we like. Carol pointed out I could get chicken tenders and layer them, instead. Smart woman.
    We are going to see the Storm, our women’s basketball team, who Carol turned me on to.
    The present moment is entertaining.

Feeling Left Out

    Carol sometimes goes to events with her friends without me.  Usually, that doesn’t bother me.  For some reason, a recent one, a barbecue with her friend Kate, had me feeling left out.  I talked to Carol about it.  She said Kate’s house wasn’t very accessible.  She also said including me can be stressful, because she winds up feeling like she has to take care of me.  Knowing that helped.

     We're off to Zoo Tunes to see Brandi Carlisle, another great performer Carol turned me on to.

     The present moment has me laughing with contentment.

Very Generous Offer

I just got this email from my friend Barbara Daniels.  That cheers up my transportation problem.

“I'm glad you qualify for the half-price taxi rate, Marian, but you also have my phone number. I am a night owl so give me a call anytime you want a ride, even at the last minute, daytime, evening, or night.”

The present moment is sunny.

This and That

    The other day, I did a scary goof, forgetting to remove the cardboard under a pizza, before putting it in the oven.   Fortunately the temperature wasn’t over farenheit 451. I thought maybe I should stop using the stove.  Carol said it was a fairly normal mistake and that it was probably safe to continue to use it.  I was relieved, because it would be a pain to have to stop.

    Carol told me she is uneasy about some times I come home by bus alone in the evening.  She would like me to take a taxi sometimes.  I’ve been hesitant about the cost.  My friend, JoAnn, gave me the good news that I qualify for half price taxi rides.  That will help a lot.

Good News

    Office Depot wound up fixing our computer, so no one lost any data, including a slew of tunes.. Lena had a bit of homework go missing, but she had it in email form, too.  So she didn’t have to say, “The computer ate my homework.”
    We all three went to Minneapolis for the HDSA conference. Lena ran around with her friends. Scientists  reported on promising research. We also got to see the sights there.
    At our recent Care Committee, Alice asked me how I am doing about transportation. She nudged me about that I had been shy about accepting a lift from a friend of hers from Ann Patchett’s talk.  She said, “Accept the ride next time.”
    Dick said, “Just be careful not to ride with strangers with candy.”
    Our friend Mel found us a small vacuum cleaner.
    The present moment is sunshine.

Ring Solution

    I have been going to Oregon Shakespeare Festival for 35 years, because I am a big fan.  When Carol and I got together, she saw the charm of the trip.  While we were there, this year, she bought me a band that fits my left ring finger and has the quote “to be or not to be”on it.  She reassured me I don’t look too femmy wearing both rings.
    Carol joked that her daughter Lena, whose birthday was last week, wasn’t going to get a present because Carol spent that money on me.  I reminded her the ring was on my birthday list.  She said, “Your birthday isn’t until the end of August.”
   I said “I will remember.”  And I will, even thought my memory is crappy.
   I had trouble with the brakes on my walker getting loose.  I was going to call my PT to find out who I could ask to fix them.  Carol figured it out.  She is what my friend Mel calls a can-do femme.
    I asked Carol whether she thought I should stop cleaning my glasses, since that is how I broke the last pair.  She agreed.  I asked her whether she would like me to ask my friend Dick to make cleaning my glasses part  of our standing date, so it all doesn’t fall to her.  She said she doesn’t mind doing it.
    I had been doing reading a page of Spanish as not a daily practice, but a regular one.  It became irregular when I didn’t bring those books to Ashland with me.  I’m winding up agreeing with my friend Kit that it is too slow to keep momentum.  Fortunately, Carol also has Dreaming in Spanish in English.
    My vocabulary in Italian is much better.  I’ve switched to a page at a time from Corriere Della Sera, a newspaper in Turin, where I have friends.  That went much more smoothly.  It prepares me for the trip I’d like to make back there with Carol.

Feeling Dopey

    Mondays I usually go to the gym.  I decided to take a holiday, Memorial Day, even though the gym was open.
    My alarm goes off at 9:00 so I will remember to take my medicine.  Wednesday, for some reason, I felt like going back to bed, so I did, after eating a croissant, so I wouldn’t lose weight.  I have a standing date with my friend Dick for lunch Wednesday, so I got out of bed in time to make the bus to meet him. I told him I had been back to bed, and that I was feeling like it might be hard to get to the gym on Thursday, because of that dopiness.  He usually sees me at the gym. Dick had noticed I wasn’t there Monday.  He said it is all right to take a break, but important to get back to my exercise routine.
    Dick also asked me if I was feeling depressed.  I thought I might be and remembered it is a side effect of the tetrabenazine I am taking.  I thought I could ask to increase my antidepressant.  I mentioned the issue to Carol.  She didn’t feel I was depressed.
   On further thought I realized I had skipped my morning dose of creatine Wednesday, because it has a stimulant effect.  I wanted to sleep in.  I also missed my meditation to make it to lunch.  The combination was why I had felt off my game.
    Sure enough, Thursday, when I did both of those things, I only felt my usual resistance to going to the gym. Dick waved to me, through the window,  as I was on the stationary bicycle.  Our friend John stood beside him and applauded me.
    Last night, I had quite a bit of trouble getting to sleep.  I take a bunch of  sleeping medications.  It felt like I had forgotten one.  So, I am sleepy again.  I canceled Interplay, this morning, and a concert I was supposed to go to  with Carol, tonight.  Oh well.
    The present moment is dozey.

I broke the computer

     I cracked the screen on our computer by closing it with my headphones in it.  Fortunately, we bought the service plan, so it will be replaced free.  My documents were protected by Dropbox.  Carol lost a lot.  Particularly important were photos she had taken.  It created more stress for her to have to take it to the store and figure out what happened.  I felt badly and apologized.  I suggested I should stop using our home computers and just use the ones at the library so I do't hurt ours again.  She felt I was overreacting.  I wound up agreeing.
     Because slept in one morning missing breakfast and forgot one meal of Ensure when I was distracted by a day-long medtation, I wound up losing a pound.  That is discouraging.  I decided the interim solution to my wedding ring not fitting is to switch it to my right hand, which is enough larger,
     Today I am off to our wonderful Folklife festival.  Carol warned me I need to allow more time than before to get through the crowds with my walker, so I am off a bit earlier than I had planned.
    The present moment is musical.

Right Direction

Since my wedding two years ago, I’ve lost enough weight I have had to add layers of tape on my ring to make it fit.  I would like to be able to get rid of the tape so I can fiddle with the ring.  In the two weeks since I have been on the new diet, I have gained two pounds.

The present moment is blue sky.

Brainstorming

    We had the Care Committee meeting, last week.  Carol’s daughter Lena said she wanted to join us, because she is involved in my care.  It was cool having her there.  She jumped right in and helped write suggestions on the whiteboard.
    We did some brainstorming about my difficulty chopping things.  Lena said she could help, days that she is with us.  Louise said she could bring veggies to my house on our standing dates.  She also said she could bring me some soups.
    We talked about ways to help our dog get exercise. JoAnn said she was willing to help.  Lena said she could, too.  She pointed out that Louise had only written “L” for Lena, while there was more than one person whose name starts with L.  Louise said, “I might take Pearl for walks, too.”
    I have been having trouble getting the dog back in after putting her on the leash to take her into the back yard.  Joann pointed out we do have a door in to our basement, so I can let Pearl in and out more directly.  Sure enough I did it that way and didn’t lose control.
    Carol joked that she would pay to see someone cut my fingernails and toenails.  So far, I have been able to do that.  I am a bit nervous about getting help for that eventually.