Adjusting – it’s not really the right word

So here we are in our apartment, which as everyone says (everyone being family thus far) is ‘us’.  We’ve always liked bright open spaces, and we like being downtown, although I haven’t really figured out what constitutes downtown in Durham.

We’ve had a week of Duke hospice services, which included admissions nurses, our nurse, Beth, a social worker, Jan, and suggestions for using a CNA (certified nursing assistant, I think), which we’ll do next week.   All are wonderful, caring, thoughtful, and professional folks.    They’ve all asked Peter’s goals, which remain the same – to regain as much strength as possible in order to move back into curative drug regimes.   We both know this is hard, but we’ll give it our best shot.

How are we?   Peter and I were talking the other night, and Peter said he was happy.   Now that seems an odd term to use right now, but Peter’s always had the ability to live now, and other than the continuing (but lessening) stomach issues and fatigue, he’s generally all right, and in a good frame of mind.    Jason comes over every day, and he and Peter have great talks, ranging from deeply philosophical to the mundane.  They’ve always been close, and these times are very important for both of them.

Kristina arrived late Thursday night, and is staying with Jason and Nina.   She spent all day with us yesterday, and will do so every day until she returns to San Francisco on Tuesday.   She’s a wonderful support for both of us, and she too is very close to Peter, and is a loving daughter full of ideas and actions and plans which Peter loves hearing and making suggestions and comments.    Kristina is a very centered person, as is Peter, and it’s a joy to see them interact.

Me, my days involve helping Peter, dealing with all the various mundane issues that arise in any life, and planning for excursions, small and large.  Small meaning a 6 block ‘wheel’ to the farmers market, large meaning a trip to England (which we both consider home) should that be possible.   Even smaller – making sure that Peter eats enough, and trying to cater to his changing tastes, which do vary within a day as his stomach settles or makes waves.   And larger – testing Peter’s walking ability which is a bit better.

More me, I’m happy to be with Peter and to help him in every way I can, and yes, I now count myself officially as a caretaker, because that’s what I do, and will continue to do.   And I cherish all the many activities and tasks involved in caretaking, because it helps Peter, or gives him comfort, or relieves him of stress.   I’m much less good at taking care of myself, and I know I need to do that if for no other reason than to ensure I’m available for Peter.

Friends and colleagues have been emailing and calling us, since the word has spread about Peter.   It’s heartening to hear from so many people.    In this situation, life is pretty much reduced to an extremely ill person and the small, but vital world of medical and personal care.   Not much else really exists, but having family around, and visits and messages from friends and colleagues makes one think of the wider world and makes one realize that there are a lot of folks out there who think of us, or Peter especially, and who care in many different ways.

And we appreciate each and every thought and prayer and wish and message.


MeIt’s a hard time for everyone, but sharing the burden helps enormously.


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