Category Archives: Ann’s Update

Ann’s Update: 23 Jan 2011

Dear Ladies and Gentlemen,

Well, I would have managed to write last night, except for the fact that Sasha got sleepy early and everyone headed for bed, including me, at an hour when I would usually be sitting down and gathering thoughts and memories for this note. I’ll either make this rather short, because we’re going to be interrupted momentarily by a plumber who will, we hope, make things flow as they should in the bathroom and kitchen — or I’ll make it long because the mood will be right and the urge will overtake me. The writing urge, that is.

Right now, despite my knowing that 99% of the world’s population is unluckier and less blessed than we are, I’m caught on that knife-edge between light and energy on one side, and dark grey grouchiness and self-rejection on the other. Mild depression, I guess. (Self-pity, says my inner judge.) On PBS television there is a great program about the Big Bands of the ’40’s. Benny Goodman’s music, tremendously familiar and loaded with memories — or bits of memory — about high school (most of it sheer hell for a girl with an English accent who had recently been in Europe and home-schooled) …. Actually, when I got to private school in New England, things got a bit better. There were lots of weird people there; I wasn’t the only one. (The inner judge grumps, “You think you had problems because you had an English accent? Try having a black skin, kid! Now, THAT was problems!) My mother persuaded my father that my brother and I should change our names to her family name, instead of going around with a name that sounded Jewish (because it WAS Jewish). So we did. We became Ormiston, instead of Gotlieb, because my dear father had experienced anti-Semitism (plenty of it in the State Department, for which he worked), and didn’t want to make his kids go through what he’d gone through (and because he was afraid of my mother). It worked pretty well. But kids will make hell for other kids without the excuse of black skin or Jewishness or even English accents. If they’ve been bullied at home, they’ll bully others at school. Boys, especially, will attack weakness or gentleness, and my brother was very gentle — extremely intelligent and gentle — and he was sent to private boy’s school in Canada and never really recovered from it.

But those were the days when good parents did things like that — sent their kids to private schools (if they could afford it) and told the boys to “buck up” when they wrote home pleading to be released from torment. Bullying was accepted as normal (that lasted until just a couple of years ago, and is still accepted in most schools), and young males were expected to fight back or just put up with it. Nobody talked about the suicides. And, realistically, it was simply the law of the jungle — if you can’t fight back or turn the tables in some manner on your attacker, you will go under and die. The survivors were strong and apparently self-assured. The British Empire was forged by such survivors. And they kept the empire going until a little guy who walked around in a cotton loincloth and taught helpless Indians how to handle the tough, hard British took the country back from them.

I’m probably going to have to throw out all this stuff, unless I decide I’m writing Book Three on Caring Bridge, and Facebook, and I’m not sure that’s what I should be doing.

I’m just in a mood to hate the dark side of humanity (including my own Shadow), and that is a complete waste off time. It’s there because it has to be. My only job is to make unconscious things conscious — starting with myself and my own Shadow.

As for Sasha, he’s doing well and better, really improving every day. It looks as though the various things we’ve been attempting — hanging the heel out over the edge of the cushion — has begun to heal the ulcer. And he’s sleeping better (which means the caregiver at night gets more sleep).

And I’ll stop running on at the keyboard, and give you fuller Sasha information in the next note.

Blessings and love — 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: 18 Jan 2011

Dear Friends Everywhere,

Wonderful news! The skin graft, which has been considered almost surely a success, but with a couple of questionable places that were being carefully watched, is now officially a complete success! We can see the new skin clearly, and the nurse who comes three times a week to change the dressing said, “It’s time to be happy! The graft is perfect!”

There is still the small ulcer on the heel, but that is considered the result of pressure over a long period of time in bed, and it is looking a bit better. Sasha is being taken on short walks with the walker (and with a caregiver by his side) every hour, and we are trying to get him to remember to walk only on the ball of the left foot, not on the heel. And whenever he sits down for a while, his left leg is lifted on pillows so that the heel hangs in the air, without any pressure of any kind. The heel is the source of considerable pain, whenever it is touched, and we hope it’s going to clear up soon. Sasha’s other source of pain, which might or might not clear up in time (weeks? months? years?) is his peripheral neuropathy, together with (says our doctor) pain caused by regeneration of damaged nerves. We aren’t sure what causes the needle-strike pains which hit him usually in the mornings and always in the late evenings, but if it’s nerve regeneration it would theoretically fade away when the nerves recovered. If it’s the neuropathy, he’ll probably have it the rest of his life, which means he’ll have to be on pain meds, which means he won’t be able to drink red wine again, which is a dreadful thought. We do give him a glass of Fre wine, which is non-alcoholic, whenever a guest comes to dinner and brings a bottle of red wine. He’s put up with that for quite a while, and there are times when I think he forgets it isn’t the genuine stuff.

Inevitable question from one of you: How could Sasha not know that non-alcoholic “wine” is not real red wine? Answer: aside from the mental state (the “d” word), he lost all sense of smell several years ago, which is something that can happen to chemists when they are elderly, simply as a result of having been exposed to too many chemicals over too many years. It’s quite common among serious chemists when they’re over 75 or so. And loss of smell means alteration of the tasting ability.

Again, I send my fervent thanks to all of you who have donated anything from fifty cents to thousands of dollars to help us with the cost of 24-hour home care. Without your help, we would be forced to entertain thoughts of nursing homes or places like it, which would be really dreadful for a man like Sasha, whose mind is still bright and creative (some days are better than others), despite the memory loss. As soon as he can walk as far as the lab, he’ll be back out there and truly happy, but he will still need a caregiver close by.

So thank you all again, with all my heart.

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

Ann’s Update: 14 Jan 2011

Dear People,

Tonight, just a small note — probably a mere short paragraph, because it’s been a day of almost too much activity — all of it positive and good, but tiring. I need a long night’s sleep, then I can continue in the morning, fresh and energetic, full of creative juices. (This, of course, is utter balderdash; in the morning, any morning, I am a monster for at least one hour after waking up, or trying to wake up, or doing my best NOT to wake up, and I don’t even remember what the word “smile” means for quite a long time, although I do my best not to scare anyone, sometimes wearing a brown paper bag over my head on my way to the bathroom, since I feel this is the least I can do to innocent friends, caregivers and other entities.)

By the way, I gave the wrong name to the wonderful cats in my daughter, Wendy’s house. Jason, her husband, whom I adore madly, remarked that these cats were not, he believed, called American Alley Cats. and it seems he was right. I know I saw that title in print, but they are now officially American Shorthair Cats. Tania uses the word, “tabby,” but I think that’s unofficial too. I think they should be called something like “Salt and Pepper Cats,” but nobody’s going to listen to me.

There’s a lot to report, but I’ve got to get some sleep first.

May all of you in the appropriate time zones have a good sleep, too.

Blessings and Good Night — Ann