Tag Archives: caregivers

Ann’s Update: 8 Mar 2011

Dear All,

Okay, I’m B-A-A-A-CK.  And never mind asking where I’ve been, because I wouldn’t tell you even if I knew.

Sasha is not only doing well, he’s doing remarkably well on the physical front, and even a little bit on the mental front.  Our two Tibetan ladies, who usually take over during days, have been responsible for the improvements in Sasha’s body.  They exercise him almost continuously, sometimes gentle upper-body stretching, which strengthens his arms, sometimes standing at the kitchen sink, lifting feet and legs (one at a time for now), and once a day, walking all the way to and from the lab.  Gradually, they’ve weaned him off the walker and back to a walking stick (with one of the women next to him at all times), and as of today, he can walk all by himself with his stick — not fast, but steadily — although, again, with a capable, strong woman right behind him (they are really strong, these gals — all three of them).

No more shuffling steps, thank you very much, and no more moments of dizziness.  With the increased strength in his legs — and arms — he’s beginning to hold himself differently now.  A bit straighter, a bit more like the original Sasha we’ve been missing for so long.

Tomorrow, I’ll tell you about the mental side of things.

Love and Blessings — Ann

Ann’s Update: 2 Feb 2011

Dear Everybody, Especially Those in China,

Again, I have a couple of good reasons for having presented you with silence for the past few days (I’ve lost track of the number), such as:

1.  Laying off one caretaker, interviewing another.  The details are a bit sad, but these things happen.

2.  Wrapping the next to last Xmas present.

3.   Making phone calls and answering phone calls and missing phone calls.

4.  Going on errands that should have taken 1/2 hour and actually took three hours.

5.  Recovering from same.

6.  Promising myself that I’d done everything I needed to do in the outside world, only to discover five errands that were urgent (the next day) and taking two to three hours to do them (how do you underline words in this program?) and two hours to recover again.

7.  1-1/2 hours spent in feeling sorry for myself, followed by 27 hours spent feeling guilty for feeling sorry for myself.

8.  The revolution in Cairo.  I have an answer for what should happen next in Egypt.  There should be a Golda Maier (Mayer? Meier?) — with an Egyptian name, of course — an educated woman, a mother and maybe grandmother, who can fearlessly offer herself as transitional communicator between the people
and the government.  She would be welcomed instantly, for reasons I will offer next time, and Egypt will step into the 21st century.

9.  I’m tired, and I’ll continue this tomorrow evening.  I will also answer those who got their panties in a bunch over my China comments (which delighted me, by the way).  During the day tomorrow, I will be Nanna, and will regain what I have left of my mental health.

10.  You are good people — at least, most of you are, at least most of the time, and I send my love to you all.
Blessings — Ann

P.S.  Sasha is doing very, very well, and has gotten back to the lab again, this time for over two hours, today.  He becomes much happier when this happens. And his chemistry memory seems to be very good indeed.  And the Shulgin Index will be available, the printers say, the first week in March!

Ann’s Update: 28 Jan 2011

Dear People All over the World, including China, unless the people in China are among those who believe that Tibet is better off as part of China than before they were part of China. Although I don’t wish to alienate any nice people in China, they must understand that I am a devoted admirer of the Dalai Lama and all the people of Tibet who resisted the invasion of Big Brother China.  I would not have expanded on this except for Greg, who always puts my writing onto Caring Bridge and Facebook, and who phoned me today when I was driving in town (without my head set) and asked me (referring to yester– oops — several days ago, when my salutation included the words, “except the people of China,” or something like that), and asked me, “Why?”

My reply was rather scattered, since a corner of my mind was busy trying to identify possible policemen or other law enforcement who might notice that I wasn’t talking into a headset, and subsequently levy upon me a fine of huge proportions.  And they would be right.  I believe in headsets while driving and also while not driving, and I own two of them, but don’t know where they are at the moment.

Since then, I’ve reviewed the part of my brain that contains files called “China and Tibet,” and re-affirmed my strong feelings about that subject.  That’s why you are being subjected to all this.  I’m out of the China closet.  Actually, that used to be (in the late 1800’s) called the China cabinet, but —- Never Mind.

Where was I?

Oh, yes.  Hello, Dear People of Everywhere,

Today was one of the Big Days.  Sasha actually walked all the way to the lab, and took his seat inside, with his caregiver present, and began talking chemistry with Paul, who took some fantastic photos.  Tania joined them at one point, and there is a great picture of all three of them, smiling broadly.

We are (meaning the two girls/women/ladies and I) gradually getting a picture — sort of — of Sasha’s pain problems, the where and the why.  His Achilles tendon and the heel have become almost-perfect examples of superb Western medicine and what can be done by really good Western surgeons.  The original angels are, of course, Drs. Howard Kornfeld and Paul Abramson, who pointed us in the direction of said surgeons.  Without them, we would never have heard of doctors who label themselves “Limb Savers,” and we probably would have lost a foot by now.  And, yes, we all would have lost that foot.

In the evenings, Sasha’s needle pains attack his leg, and they are now being understood as the results of the peripheral neuropathy, and he’ll probably continue having that problem.  We’ll do our best to make him as healthy as possible by means of diet (fresh fruits and veggies, protein, vitamins, etc.) as well as exercise.  Following the advice of a very wise person, we’re giving him goat’s milk and Basmati rice, and these do actually help reduce swelling in his feet, which is a real concern.  But we’re all still learning.  Every night is a bit different.  When he can be persuaded to stay in bed most of the night, the foot swelling is gone by morning.  When his pain makes it necessary for him to sleep in the Lazyboy chair, the swelling is still present when he wakes up.  But all of it is getting better.

Sasha’ mental state seems to have improved during the day, since he came home from hospital, but the “sundowning” is almost always present, to some extent, by the time evening comes.  His chemical knowledge is still there, though, and now that he can work in the lab with Paul, it will probably sharpen and improve, along with his analytical ability and other aspects of his mental functioning.  But he can’t be left alone, because there’s too much risk of falling, among other things.  So we continue to fund-raise, because we’ll need 24-hour a day help for the rest of Sasha’s life.  So far, as I’ve said many times, we’ve been amazingly lucky in our caregivers, with perhaps a single exception, but we’re busy taking care of that exception.  We seem to have attracted really lovely human beings — funny and caring and patient — and may it continue to be so.  With Tania and Greg as our right and left arms, all we can do is give thanks (and feed them all Basmati rice).

For the moment, this is all.  When Greg returns from his mother’s funeral, I’ll write more.

Love and thanks to all of you.  Sleep well and dream in color (unless you don’t want to).    Ann

Ann’s Update: 20 Jan 2011

Dearest Friends,

Sasha’s heel is improving, but he’s still lifting his heel from the ground when walking, just to insure as little pressure as possible until healing is complete.  In the evenings, he still gets the needle-pains in his left foot, and only the pain meds and a bowl of chocolate ice cream (by mouth) seem to help.

It was a beautiful day and we saw none of the reported high winds that brought trees down all over the East Bay.  It’s hard not to hope for warm weather and early spring, but common sense reminds us that more rain is needed, and more rain will come.  I just hope the weather gets a bit less bone-chillingly cold, especially at night.

Sasha’s spirits have been a bit low the past two days, although he smiles and laughs as soon as Paul Daley arrives, or Tania, or Greg, or several other familiar, loving people.  He always smiles at me, as I do at him.  Our two women caregivers are not only trained, and immensely capable, but affectionate and truly caring with Sasha.  They change what has to be changed during the night, and they always do what has to be done with amazing good humor, no matter how little sleep they might have had.  During day shifts, they engage Sasha in various ways, not letting him droop or sink into sadness (which sometimes overtakes him for a few minutes), and their good humor always brings him out of those low moments.

I’ll write more about our two women caregivers tomorrow or Saturday, but it’s too late tonight to write as much as I’d like.  I have one question on my mind:  how come people who take care of property — houses, farms, haunted mansions — are called caretakers, and people who take care of people are called caregivers?

Never mind….

Sleep well and Blessings ——Ann

Ann’s Update: 15 Jan 2011

Dear Everyone,

Sasha is doing well, and would be doing even better if it weren’t for a “blister” on his left heel.  You could call it the possible beginning of another ulcer, but we don’t want to go there.  The doctors and nurses call it a pressure blister, and we’re trying to get him to remember, every time he gets up to walk a bit (he’s supposed to do that about every hour — with a helper beside him) to walk on the ball of  his foot and not the heel.  It’s not too hard for him to get the message, since the heel hurts severely every time it’s touched.  It’s tempting to think things like, “Why is there always some new ulcer or skin breakdown; why doesn’t all of it go away, now that the skin graft is  successful?”  But the fact is, he’ s still got the peripheral neuropathy, and probably always will have.  Which means, it’s going to be hard to get him completely off pain meds, because there’s always some nerve twanging away, especially at night.  The only reason — for me — to want him off pain meds is that only then can he have red wine again — even just a single glass.  And that is, or was, his favorite drug, his drug of choice, and I hate to see him go through the rest of his years without enjoying it again.  We’ll figure something out.

Since coming home, my impression is that Sasha has had somewhat less “sundowning” than before. Maybe I’m just imagining it.  He certainly does have evenings when reality is definitely — ah — altered. Not a good trip, either; it’s usually associated with some anxiety, such as trying over and over to treat his small television monitor like a computer, and wondering why he can’t find the mouse OR the keyboard.  But I’ve noticed that there are now some evenings without sundowning, or at least with a minimal amount of it.  There’s no question that being home is better than being in hospital, for anyone, but particularly people with mild dementia.  They need familiar faces and things around them, and any place not-home is disorienting.  He goes to the doctor without trouble, because he’s with familiar, loving faces, people who know what’s going on, and he knows he doesn’t have to decide anything or fix anything or do anything worrisome.  And the visit to the doctor’s office is relatively short.  Before you know it, he’s headed home again.

This leads me to thoughts of Burning Man and other places in the world that I’d enjoy seeing again (or, in the case of Burning Man, enduring/surviving again).  If someone offered to lend us a nice-sized RV and pay our way to BM, I would be tempted to say Yes!  Yes!  (and Thank You, of course), but then I would have to sit down and do some thinking.  We couldn’t do it without a care-giver, of course, because Sasha can’t be left alone.  And even the most devoted care-giver would need time off.  Okay, then, two care-givers.  Since they would be together in the RV, they would have to like each other and get along very well.  (Maybe we change the description of the RV from nice-sized to HUGE! )  Could I be the second care-giver?  Yes, I could.  But my months of being just that, last year, taught me how exhausted I can get in a rather short time.  Not only am I no longer young, I have a very bad back.  I also need ten hours of sleep, while Sasha needs about six hours.

What about the many wonderful volunteers who have offered to help take care of Sasha now and then?  Well, that sounds great, but my man needs — as I said before — familiar faces around him, especially at times when intimacy is unavoidable (peeing, etc.).  Above all, there is the possibility of something physical going wrong, like another stroke, when medical treatment is vital within the first few hours, to prevent disaster or death.  Burning Man is not the place to take that kind of chance.

(Sigh.)  Well, we don’t know how things will develop within the next months or years.  Sasha’s body has always been amazingly strong, and his mind has been one of the world’s best.  Maybe ——- maybe.  We’ll see.

This has been a lot of speculation, but that’s what came out today, and that’s what I shared with you.

I’ll tell you more about what’s going on within the next few days.  The weather in the Bay Area is predicted to be dry and sunny and a bit less cold for the next week, so enjoy the sunlight and have a lovely weekend.

Love and Blessings to all of you — Ann