Sunday, June 27, 2010

New Glasses

Paul Williams in his new glasses, 6/27/10.

Alexander and I picked Paul up from Aviara and brought him home for a few hours today. He played solitaire for a while which seemed to amount to placing the cards in their suits. I changed the batteries in his hearing aids and used nail polish to write his initials on both hearing aids and his new glasses.

I'm concerned about his physical health. He's become considerably weaker and his balance isn't good. He teetered and swayed nearly falling several times before we reached the door to the apartment. I said to him, "If you walk a bit faster it'll easier to keep your balance". But he doesn't seem capable of walking at a normal speed these days.

This week I have it on my list to call his doctor and see if I can get him to prescribe Paul some physical therapy, which will amount to an order to the nursing home staff to walk him around the nursing home once or twice a day and maybe get him on the stationary bike.

Patients that are in the nursing home via Medi Care (usually staying no longer than 2 months) and are rehabilitating, have a room with a therapist putting them through some physical paces. Paul, like many long term patients without "long term health insurance", is there via Medi Cal (or Medicaid).

Medicaid's Skilled Nursing Facilities are what you can expect if you outlive your spouse and your relatives can no longer take care of you. It makes one think twice about those long term health insurance policies. They cover the cost of being in a privately run nursing home. Believe me the difference in the care, from what I've seen, is staggering. One home near us has ponies in the back yard for petting. A lovely walking garden. A pool. Daily exercise classes. The same staff members see you daily and know your particulars. Dogs are in rooms and hallways for petting. Meals for family members are complimentary and pretty good. And they make sure you and your clothes are clean. And this was a place specifically for dementia care.

At any rate, I asked Paul if he'd be up for the physical therapy and he said he thought it would be a good thing for him.


  1. Hi Cindy Lee,
    I'm back from DC and just caught up with your blog. Great stuff here. Physical therapy is pretty important. As you're discovering, it's not always prescribed when someone is in decline. Depending on the situation, some people will tell you that they have to be capable of being "rehabilitated." In my experience, exercise improves the quality of life. I've also found that some therapists charge for 40 or 50 minutes, work the patient for 10 or 20 minutes, run to the next patient, and then send invoices to the appropriate billable agency. As a rule, however, most of them are quite good. The personal chemistry is important, however. As for the loss of walking capabilities, that's the most baffling. It's hard to accept that someone can't remember to put one foot in front of the other. The skill comes and goes, but increasingly goes. Use it or lose it becomes a hard daily lesson. Any distraction while walking causes a freeze and balance problems. Simple tai chi warmups might help. Sometimes counting out the steps for them in a consistent rhythm will help. Or maybe singing a song. Perhaps you need to write a walking song for Paul? Turning it into a dance works even better. The concentration seems easier to maintain.
    All best to you and yours,

  2. Every Saturday morning my husband Bud and I take Paul to the Zen meditation group Paul founded 14 years ago. Paul is a member of the Order of Interbeing (OI)in the tradition of Plum Village (Thich Nhat Hahn). Those who become OI members commit to a level of practice and involvement that is quite amazing. I've only been a member of the Compassionate Heart Sangha (a sangha is a group of brothers and sisters who practice together) for three years and when I joined Paul was already quite impaired. He read beautifully but rarely spoke in the group. I often wish I could have known Paul in prior years and been able to benefit from his wisdom and insight. His books (for example Das Energi) provide a window into that person. Although it's not the same as having him share insights during Sangha, the spark is still there. His hugs are amazing, his smile radiates love, and when he speaks it is with such wonderful energy that for a moment I can see Paul as he was before his injury and subsequent dementia. Jan McClure

  3. Hello Cindy,

    I have been reading your blogsite for the past hour and I just wanted to say that I am a fan of both you and your husband. I have been reading Paul's articles and books for many, many years, and I am deeply saddened to hear of his condition. It's sad to think of someone so intelligent and talented as a writer to be struggling just to remember simple things and physically deteriorating. I am impressed with the way you seem to be handling it. It must be very difficult on you.
    I have a blogsite of my own that is mostly music-related, but also dedicated to literature (mostly Beat) and have posted a few articles of your husband's. I make no money from the site and I hope it is okay with you, and him. I have only posted the articles out of love of his writing style.
    I wish you and Paul all the best in the future, and please tell him Jay Mucci says hello and that I loved his books on Dylan, most of all. God bless...

    PS...are you still taking donations on his site?

  4. Thanks for the great contributions you guys, I love reading your comments.

    Jan I thank you and Bud many times over for taking Paul to sangha on Saturdays. He may not be entirely with it but I believe that each time he gets to go out to a "normal event" he reconnects with the normalcy of life.

    Jay, thank for reading Pauls works and listening to my music over the years. Yes, Pauls still takes donations for his care via either Paypal or the mail. Thanks for asking

    Doug, it's always great to hear from you and I imagine your Buckminster Fuller play is going over gangbusters on the east coast...