LEWY BODY DAILY JOURNAL

This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.

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Monday, June 9, 2008

Moving slowly

Today was somewhat more difficult. I had hoped to find a place where we could drop off our laundry and pick it up the next day, but when I found such a place and succeeded in communicating mostly by pointing I learned that if we dropped off our laundry on Saturday it would be ready on Wednesday. That wouldn’t do, so I got directions at a hotel near our apartment to a laundromat a short subway ride away. That was my first priority this morning. Four people make a lot of laundry—we had a full rolling carryon suitcase and another bag. John offered to help but I didn’t want to wait for him to get ready. My son went with me to the laundromat and my daughter came an hour later to help me carry the laundry back. It took a long time to do—it was around 11 am when we got back.

John wasn’t ready to head out to a museum, though he had gone out to do one errand while we were doing laundry. Once it got to 11:30, I suggested we eat lunch at our apartment before going out. We finally headed out for a museum around 12:30. As we were walking I said to John that I wished that just occasionally when I was late getting back he would be impatiently waiting for me instead of not getting ready until I was there to push him. He said should he not have washed the breakfast dishes? I said that he had lots of time. He said he didn’t get distracted, I wasn’t accepting that things take him longer now.

The German history museum was very well done, though I found the 20th century part too painful. We went back to our apartment with the idea that we would rest for an hour and then go to Checkpoint Charlie, but then John said he didn’t want to go. He was frustrated he hadn’t gotten to check his email (something my daughter and I have been doing at a nearby coffee shop while waiting for him to get ready in the morning).

I’m willing to work around his needs the way I have been doing. But I do get frustrated sometimes and easily get so resentful when I don’t get any appreciation or even acknowledgement for doing the laundry or when John is huffy that it isn’t his turn to do the dishes. I’m not very good at this. At the emotional part, I mean, at having empathy for him.

The picture is a view from our apartment, looking towards the Gendarmenmarkt and the Franzosischer Dom.

When John changed plans on us I suggested that we have a quick dinner at the apartment before the kids and I went to Checkpoint Charlie. I went to the supermarket and got sausages and the local currywurst sauce for them. And then the kids and I walked to Checkpoint Charlie and spent a long time in the museum there. It is a little disappointing not to be able to see anything of the wall, but the stories and pictures of escapes (and actual cars and boxes used) are moving, particularly seeing so many stories at once. I was also taken by the story of an American named John Runnings who made a statement by climbing up onto the wall and walking on top of it for nearly 500 meters in 1986.

4 comments:

Pauline said...

"I’m not very good at this. At the emotional part, I mean, at having empathy for him."

I do so understand, and that is where most of my guilt feelings originate. I remember not having any patience with Daddy. It was so hard to grasp that he was not just being stubborn, that he was trying. I don't think it all sunk in until he was unable to walk anymore.

Getting frustrated will only make you feel bad. You've got to learn to chill a bit and go at his pace. It's only going to get slower and slower...

Spouse said...

It is a difficult path you are walking !!! Trying to balance your expectations with John's abilities, without stressing either of you. The fact that no one can change what is happening to him, means that those around him will have to make adjustments. If he is like my Lewy, he will feel your anxiety, and react by giving it back to you doubled, and therefore cease to function at all. And if I try to rush him- because we are short of time, he will be slower than ever, because he is concentrating on doing it right but the Lewy makes him do it upsidedown and backwords.
I'm impressed that John did the dishes and can use the computer !!!
Do encourage all those helpfull abilities as long as possible, even if they are not done to your standards- because to criticize any part of the help may cause the incentive to do so to vanish.
Yes, "patience" guilt feelings hurt too much !!!!
Di

Pam said...

What is so confusing to me is that these are not new things. I have always (not just the past 10 years) been frustrated with John for being slow to get ready and disorganized. I realize intellectually it has gotten worse, but it is so hard to change my intellectual responses. I am somewhat better at not complaining about how he does things--I never complained that he didn't do a very good job of washing the dishes.

Stella said...

A new fact sheet has just been published by Family Caregiver Alliance. I'm sending the url for you to see AFTER YOU RETURN from your wonderful vacation. For others I want you to see it now. I have been "on duty" for over ten years but this fact sheet has given me new insight to my role.

http://www.caregiver.org/caregiver/jsp/home.jsp