Friday, August 15, 2008


When I got up this morning around 6 the dishwasher was still warm, so John must have finished loading it in the middle of the night, after sleeping in a chair for a while. He went to bed sometime after I got up. I got home from running and took a shower about 8:30 and he asked me what time it was. I thought he was getting up but when I went back to the bedroom an hour later he was asleep with a pillow over his eyes. I went to work then so I don't know when he got up.

In one sense it isn't a sleep problem because he isn't tired during the day. But he is sleeping later and later, which gets in the way of his being able to get things done. The exercise class he liked was at 10 am and I don't think he has gotten back.

The specialist said John shouldn't watch TV late at night because it would draw him away from sleeping. John said he doesn't have any other time to watch TV, since I don't like it on. The specialist said "Surely there is another solution for that."

I'm not sure whether to take the attitude that now he is retired he can follow any schedule he wants or to worry that increasingly disorganized sleep patterns will lead to problems.


Pauline said...


Renata, you said so many things that are so true. I felt so like Daddy was being "difficult"...but it was my impatience and not admitting that Daddy "could not" any more.

With LBD you cannot be more correct; You must make the most of every minute that the LBD patient is not off in Lewyland. Those moments become so scarce so fast.

With Daddy he was in mid stage 6 one day and in mid stage 7 the next day. What had been irritating to me suddenly became precious moments.

Daddy did not want to die. He was afraid and said so as long as he was still able to speak. He never seemed to grasp that the end was near; he was going to beat it...

LBD is so cruel. You said it all. I wish I had you (out)there when I was taking care of my Dad.

Back then I was feeling pretty sorry for myself, gave up my professional life, was chained to the house...I know how Pam feels. It's not a good place.

Now that Daddy is gone, my only regret is that I was petty and selfish; for all the times it was about me, not about him.

Joann said...

I believe that the creativity and self determination you have will take you down a path that is uniquely yours and John's. I have faith that planning, preparing and being the best you can be, will be adequate.

Sometimes adequacy is more important than excelling. Some "tests" are simply pass/fail. In this one, being good, kind, consistent, and supportive over the long haul is more important than trying to be the superhero caregiver. Sometimes striving for adequacy is just right. Each caregiver and each cared for person finds their own "dance" that works for them.

More than anything be kind to both yourself and John. Both of you have big adjustments to make. The balm of kindness makes up for lots of shortcomings or lack of enthusiasm. Kindness is a grace we too often take for granted.

Equality works when those who come to the table have equal treasure/gifts/talent. There is nothing in Feminism that doesn't allow for kindness/gifts/compassion. At least not in my mind.

Life is one big learning experience and many of the lessons are not ones we might have selected if given the chance. I do believe that as you and John walk this journey, you will find the answers and coping skills that work for the two of you. No one else knows what those are. Blessings on you both as you walk this path.

Pam said...

Thank you, Valeria. I delete comments that link to advertisements, but otherwise I try to keep the comments open for people to express their own feelings, so you are very welcome to post comments here. I do think the usual support group rule to talk about your own experience, don't give advice, is a good approach to blog comments too.

It is hard for me because I am young, it is hard for you because your are not as young as you used to be. It is just hard. I hope we can find ways to at least feel not so alone.