Coffee date

Going on a coffee date ...

Birds of a feather

Starting the day

Sketch gets comfortable

Playing Scrabble on a rainy afternoon

Harriet in group show at Chinese Gardens

Opens November 1. Be there or be square!

Another photo by Harriet

Some sexy shadows near the river

More Sunday photos

Sunday pictures at the Willamette river

Charles and I took a lovely walk at mary rogers Park with Sketch this morning. It was so beautiful and peaceful!

Sunday picnic

Photo by Harriet

An afternoon at the beauty shop

With Bett, her hairdresser

Getting ready to see the doctor

Redecorating: TV in bed

Me and Naema enjoy a Sunday afternoon

Naema stopped. By for one of Charles' dinner creations. Nice to start feeling normal again.

A visit from Naema

Message from Harriet

Hi everyone, thanks for all your kind and loving thoughts. I am now at home recovering. Thank you so much for your love and support. HArriet

 

Harriet Levi, retired Clark College Women's Studies Coordinator/Instructor, aspiring creative whole person, general gad about town in training
amelia693@yahoo.com www.artistliszt.com/harrietlevi

Visitors permitted

Starting Monday, Harriet can have limited, supervised visitors. Details below or at link on right. No "surprise visits" yet. Thank you for your cooperation.

9 things NOT to say to someone with brain injury.

Thanksgiving in October, or Harriet's last dinner at Rio (turkey etc)

Harriet's temp email

As suggested, I have a new and temp email address for Harriet, to simplify her online experience in the beginning. Her new address is hkrecovers at gmail dot com.

Feel free to write her at this new address. Email to the old address are saved but filtered, given to her later (she belongs to every sales list in America perhaps and gets tons of "junk" mail daily } in small bits. 

When you write her, short simple messages are best. Remember, she has a hard time with short term memory, and she has a hard time putting the dots together. Even this email here might be too complex in terms of writing style.

If you write, she probably will answer. If this becomes overwhelming, however, we may have to filter this address, too. I am assuming not all that many will take me up on this. We'll see. But we are trying to bring her back into normal activity, not just too quickly. 

Thanks for your cooperation.

Transition

I bought Harriet a new Kindle Fire HD tablet with a camera for her coming home present. As quickly as possible, I want to transition this recovery blog so she writes in it herself, not I, and if she doesn't want to write anything, that's her business. I am tired of getting the crap I get from writing it (I get praise, too, but the crap sticks). 

Harriet has many fascinating stories about what she has been through, and I hope she eventually shares some of them here. But I want it to become her blog, to do with what she wants, as quickly as possible.

I am sorry some of you think I hold Harriet's friends in contempt. I don't. I think the hospital has a problem it knows it has, managing well meaning friends, and has not done enough to deal with it, passing the buck to someone like me.

If you want to visit Harriet at our home, see the other post, or link at right, for the procedure. 

I think I am done writing here. At most I will try and get Harriet to talk on video about how she is doing. This is her blog, and it is time to begin the transition for her taking it over. 

She is a miracle but there's more work for her to do. I will do my best to cheer her on. I hope you will do the same. What she has to do is against her grain, so it won't be easy. 

 

More flowers

These from her sister's kids ...

DO YOU WANT TO VISIT WITH HARRIET?

If you want to visit with Harriet for 15 to 30 minutes at our house in a supervised visit, send an email to cdeemer at yahoo dot com with the times you are available.

When I know our out patient schedule, I will match our open slots with your open slots on a first come, first served basis. I am booking you two at a time -- if you want to come as a pair, apply as a pair.

See 9 things not to say to a person with brain injury.

Cognitive therapy

Therapist very happy with Harriet's work today, "awesome improvement"continues. Therapist off tomorrow, so hugs, goodbyes, thank yous. Everybody loves Harriet here, her style, her sense of humor, when she's in her zone.

A great consistent day!

News: limited visiting!

Harriet, Pam and I had a great 20 min. session with the neurological doc. He expects 90% memory recovery in 3 to 6 months. And it would be good to begin some supervised visits with friends at home.

I have to know our out patient schedule before I can schedule these. I'll begin with 2 at a time morning and afternoon or evening visits, each lasting 15 to 30 mins. There will be guidelines to follow. Maybe 5 days a week, one of which will be a weekend day.

The particulars will be announced here. Visits may begin as early as Monday. Stay tuned.

***

Promising morning

After a dicey start -- see personal blog -- I left Harriet after breakfast looking good: knowing she is a patient with amnesia, knowing she's had some terrifying experiences, knowing she's in rehab, believing me that she's making progress (or at least, "I'll take your word for it") and definitely wanting to get better. At this point, I think this is as good as it gets.

Now to get through the day without the upsetting surprises of yesterday.

 

What to write her

Love you! Miss you! Get well!

In other words, the see spot run school of discourse.

Evening visit

I generally try to make only two visits a day to the hospital, so much driving is involved, but today was so hectic and I was so worried, I knew I couldn't sleep without checking on her. So I visited after dinner. She said she was "psychically drained," which I'm sure is true ... and also is precisely what the doctors want to avoid. The good news is, when I asked what was wrong with her, she said, I have amnesia. First time I've heard that.

She thought I was there to take her home, so it was hard to leave. Only two more days! And once she is here, Pam and I will make sure we don't have another fucked up day like today. And it started so promising, I was so excited at her demeanor this morning! How fragile it all is and how quickly things can change.

Family meeting notes

Posted at Pam's site, link in right column here.

 

Family meeting

Pam took full notes, which I'll post later. It went well, in that doctors explained things to Harriet and these things are in writing in documents we get at discharge, so there is no misunderstanding of the reality of the situation, including her limitations.

I am pleased with where we are so far.

 

Photos

She took down the photos and put them in a book - and remembered!

Missing photos

Pam didn't take them down. We figure Harriet must have herself, eager to pack and get home. Yesterday she wanted me to pack her clothes, but I told her it was too early yet. 

Now ... if she took them down, what did she do with them?

 

Morning report

I am more encouraged after seeing Harriet this morning than I've ever been. Not because her memory is better. In fact, it is worse. She didn't know the year, she thought she was in Eugene, she didn't know where she was ... but she knew something had happened to her head. She knew she wanted to get better. And she asked, When did my parents die? Not IF they were dead, been WHEN ... and she was not upset asking the question.

But her entire body language and expressions and manner of asking questions were much more coming from a patient who realizes she is a patient than a confused and frustrated person. I think this is an excellent sign. For the first time, I see a realization that something is wrong and she WANTS to get it fixed. I am really jacked after seeing her today!

Of course, reversals can and will happen. The only downer today is that she wanted family pictures -- and she had them on the wall but they are gone. What?????? All I can figure is that Pam, the last to see her last night, took them down for some reason and didn't tell me. Shows you how important it is for the right hand and left hand to have communication. H was very upset but I was able to change the subject and in a few minutes she had completely forgotten about them.

BUT WHERE ARE THE PHOTOS? Some cannot be replaced. It was a minor uproar, with staff looking etc ... thief? Pam? Hard to imagine a thief would want them. I assume Pam had reason to take them down, Harriet probably told her to, and forgot to tell me. Hiss boo!!

So I am jacked this morning because Harriet is acting like an aware patient for the first time. I hope it sticks.

I'll stay here until one, then head back for the meeting. H's schedule is very busy today, 9 sessions of therapy, all categories, busy from 9 to 430 with a rest period before lunch, ending the day with recreational therapy.

Karen is going to come over and help me figure out a dining room work space for Harriet. Recreational therapy at home. They are emphasizing, look, the program is not changing, it merely is moving to your home and will be a little more flexible as a result. But I, the caregiver, will have things I have to do, and make her do, every day! That's cool with me. And with this morning's attitude, it will be cool with Harriet.

I mean, what a difference body language and attitude can convey! I am really jacked and optimistic some good improvement can happen. It really is mostly about her attitude, I think -- if she fights rehab because she is prideful or stubborn or independent or simply hallucinating, bad news, but if she realizes she needs help, and is getting help, and follows the program, wow, I think very good things can happen. 

All is good so far, folks. Keep that good energy coming.

 

To Harriet's Portland friends

I won't have a lot of free time ahead, but this week is relatively slow, so if any of you want an "in person" report about H or have questions answered, you can buy me a cup of coffee and I'll answer what I can. My available hrs this week are ...

Tues 11-noon

Wed 1-2

Thur 11-noon

Coffee would be at the Starbucks near where Barbur and Capitol Hwy cross. Call or email to make an appointment.

 

Afternoon therapy, or the opposite of a conspiracy theory

Very interesting afternoon. She thinks occupational therapy is really dumb and boring: how to load a dishwasher, how to make a bed, how to make a cup of tea. I told her to humor the therapists, it's just part of their job to double check you can do basic things.

So we're sitting in a room full of patients being attended to by various therapists ... and Harriet starts crying, really heavily. I dart over to see what the matter is, expecting to hear that her mother is dead, but instead she says, All these wonderful people. I asked her what she meant. All these wonderful people dedicating their lives to help people like me. It brought tears to my eyes and the eyes of the therapist. Harriet, with more compassion and empathy than any human I've met.

Later, as I said my goodbyes and reminded her she was coming home in only four days, she said, Maybe we can have a simple life.

YES YES YES YES!!!! I sure hope so.

Most encouraging was the speech therapist. I see little progress but she sees "awesome progress" and is delighted, and she is the boss. She reprimanded me for being too complicated when I went thru what happened. She wants see spot run, the screenplay version, not the novel version. I can do that. She again warned me to keep friends away for a while. This is a very big deal with the therapists. They say well meaning friends are one of the major obstacles to brain injury recovery. How strange.

She had trouble getting to her feet from the floor, like yesterday in the park. This is our greatest challenge so far.

All in all, a very very good day, and I got to play with and set up with her Kindle tablet with the camera, which will only be available to her for short times a day. In fact, today I learned we are being sent home with a very structured day and exercises we have to do. More flexibility and rest time than in the hospital, but a structure and repetition and simplicity appear to be the keys. They are not leaving things to chance with us, which is good.

Maybe we can have a simple life.

 

Harriet's new Kindle camera

Posting a photo is so easy ...

Coming home gift

I got Harriet a Kindle Fire HD with a camera and I am already jealous! So cool. In my name so she gets my Prime benefits (free HBO series) and I can apply parental controls.

SHE IS GOING TO MAKE IT. At a reality/denial spot for the moment, but once home, I think she will get with the program. Her spirit and humor will not be denied!

Morning update

At breakfast, H remembered nothing of our home visit. Also she is responding to the reality of her loss of independence with a conspiracy theory: she is a prisoner in a hospital where no one will help her get her memory back because they are conspiring to keep her from driving and to steal her money. I and Pam and nurses have told her otherwise but she wants a DOCTOR to tell her to her face that she can't drive etc, so I am requesting that this happen at the family meeting tomorrow. All this is disheartening, of course (I think she was better last week actually), but you hope it is temporary and once home, and in a home routine, that she will be able to slide into the program of what she needs to do to have the best shot at some recovery. I talked to a few with experiences with cases like this and most often very little memory returns, they say. We all want Harriet to be the exception. Unfortunately what she needs to do is rather against her natural inclination to keep on the move, multi tasking, and the rest. The only time I have seen her relax is on vacation ... a few days at the beach but especially a cross country camping trip we took, weeks there and back, and she was relaxed the while. She can be relaxed if out of the usual Pdx environment she has created for herself, and my job is to keep her out of it. I wish we were rich and could go to Europe for three months or something. I am trying hard to get her into thinking about an extended vacation after hospital discharge, or a honeymoon, or whatever works to keep her from worrying about art walls and church affairs and women's circles and all the other things that come to her naturally but which in these peculiar circumstances are destructive to her best interests, or so says the neuro doctors. It won't be easy. But what she is in three or four months apparently is what she is for life, so we only get one window of opportunity to get her better. 

I don't know what the hell I'd do if I became a villain in her conspiracy theory. I don't even want to think about it.

 

Our six hour pass

The papers we signed to leave mentioned that H could not drive. Then she was told that by Oregon law her license had been revoked. To get it back, her mental condition would have to improve, get a doctor's permission, pass the test again, etc. This upset her very much, as anyone who knows her will know. (Learning she cannot handle her financial affairs upset her more later: but even yesterday, she ordered two books from Amazon on her Kindle, things I can't imagine her reading, and doesn't remember it at all ... fortunately they were cheap, but therein is the problem.So she is very depressed as we leave the hospital. I try to put a bright perspective on things. Honey, they want you quiet and relaxed for the next few months. Pretend you are on vacation! And she said, I swear on a stack of Norman O Brown's LOVE'S BODY, "I might really like this." Of course, three minutes later, no memory of this, but I am reminding her several times a day that she said it.

Driving home was a nightmare: we got caught in the Portland Marathon mess. I finally crossed the river and we took the Ross Island Bridge back.

Sketch welcomed her with sloppy kisses, the welcome she wanted in the garden hospital. He was all over her and she loved it.

This was a working pass. I had a list of home tasks to give her and mark each Acceptable, Not Acceptable or Borderline. Hardest was getting out of bed and getting out of the shower and getting off the toilet. 

30 mins at home and she was tired. She also was cold. It was over 80 outside and the inside thermostat said 72. She was cold. Normally I am the one who is cold. I had opened the bedroom window because that's the way she likes it ... she asked me to close it. Her sensitivity to heat and cold is different.

On the bed we talked. She wanted to know why no one was helping her get better. I explained that she has half a dozen therapists and doctors helping her every day, working her so hard that she is exhausted, now and again they even have to drag her out of bed to work, this is the boot camp of rehab! All she remembers is nothing happening.We went to the nearby school grounds to exercise the dog. She sat on the slanted hill of grass. When it was time to leave, she couldn't get up. If I tried to help her, it hurt her chest, too painful. It took us fifteen minutes to figure out how to get her on her feet. We missed that class, I recalled, because a substitute nurse was late giving morning meds and all the classes were late, so they cut that part. Obviously we need it.

We were to meet Pam for dinner at 630. By five she was exhausted, wanted to eat and go to bed. So we met at 545 instead. Also, getting there from the hospital, H at home was going to walk, in the car wanted a walker, and by the time we parked wanted a wheel chair. I took her in a wheel chair.

Dinner was just okay. Coffee was just okay. She has had nothing in food or drink she has really liked since Sept 16. Maybe her tasting is different, too.

Very tired by the time I wheeled her to her room. I was too. Here I am. Rooting for the Angels to win, and writing this, easier with a full keyboard on H's computer.

It was a good day. We learned some things to fix. For a moment, she saw that doing little can be something to enjoy. Sketch got back into her life. A good day ... that will start all too soon when I leave the house to get there to have breakfast with her.

 

   

Test

Testing posting by email.

 

Harriet Levi, retired Clark College Women's Studies Coordinator/Instructor, aspiring creative whole person, general gad about town in training
amelia693@yahoo.com www.artistliszt.com/harrietlevi

Turn, turn, turn

This morning she insisted she was in SF. No hospitals, no visits, no injuries, she was in SF where something weird was going on.

I got her to accepting she was having a vivid fantasy and this is fine, fantasies are great raw material for artists, and your brain injury is what makes you feel weird, and we want you to follow the brain doctor's program so you'll get back to your old self. Everything is going very, very well so far. Those fantasies will come in handy later.

Purple hat

I ordered H a purple hat from Amazon. It took two days to get from Amazon to the hospital. It took three days to get from the mail room to Harriet's room. Of course, she can't remember it's a gift from me and thinks it's the standard hospital hat. Yes, I told her she could take it home.

She was down this morning but always ready to pose. Looks tired. "Why do I have to stay in the hospital if they never do anything for me?" So we went through the story again, and how much they have done for her, and how damn lucky she is to have only a sore chest and a short term memory loss.

Tired, driving Aaron to the airport at 530 this morning. Lots to do at home, however, so no time to rest and I couldn't nap anyway. Maybe I can get a long sleep tonight, though they don't seem to help that much either.

No takers on my request for specific help yet.

Help: setting up an art table

I'm not letting Harriet in the basement because the stairs are treacherous and the area is too cluttered. So I am turning the dining room table into her work space for art.

I need someone to go into her studio with me and bring up the BASIC supplies she would need to paint at the table. I also need to know how to protect the table ... I'd throw a picnic table cloth over it but maybe there is a more "professional" way to do this.

If you can help, reply with a comment here and contact info, or send an email, or leave voice mail. My schedule is tricky but I'd like to get this done next week. Thanks.

Friday photos

Steak for dinner

Feeding Sketch

Quotation of the day

"Sometimes it's good to forget something that is overwhelming."

Harriet on not being able to remember our overwhelming training this morning.

Overwhelmed

Harriet and I had training all morning for our first "day pass" and home visit, in prep for coming home and transitioning to out patient treatment.

Her kind of brain injury ... dead cells from oxygen deprivation ... is the trickiest to cure and the easiest to fuck up. Hence their freak out from unexpected visitors walking into her room. I think of her as in mental quarantine. When she does get home, no visitors or phone calls whatever for a period of time. The relapse dangers come from head jolts and brain overload. At home, I am going to become the toughest body guard in the western world and no one is getting near her except through and over me.

It's tricky. Email is bad, doing a crossword puzzle is good: the former is too scattered and busy, the latter is focused.

Today I saw for the first time an expression in Harriet that she is beginning to understand the seriousness of her injury. And the long haul of recovery.

Her driver's license has already been taken away for medical reasons. It will be quite an obstacle course to get it back if she reaches the point where a doctor would approve her to drive.

Clutter is bad. CLUTTER IS BAD. Have you seen our house?

My job tomorrow is to get rid of the clutter, which really means moving it to the basement and out of sight. I had a padlock put on the basement door.

I want to turn the dining room into a small art studio. I will ask for help in doing this. Who can help? What are the basic supplies she would need? If you can help, give me a call or email. Now is a chance for an artist friend to help in an important way!

I am telling Harriet this is our chance to have the honeymoon we were too busy to have 16 years ago. A two month honeymoon together! I can get into that, and I hope she can, too.

Her art

Activities

With Pam's dog

Reading --- with new glasses

Harriet walks to Starbucks

An hour later, back in her room, she couldn't remember being outside today.

A poem for Harriet

THE HEART IN CRISIS

In the worst of times
we are the best we can be.
What mattered once
seems trivial in the panic
of ending possibilities,
and what was taken for granted
now is all that matters
and the fear is
we realize this too late.

Good news on three fronts

And boy can we use it.

1. Speech therapy. I watched it this morning. She got 100 percent on brain tests that yesterday she got under 50 on. Therapist was ecstatic at improvement in one day. Some rewiring happened.
2. Went to bank, easier and less stressful to manipulate to our new needs than I thought.
3. Plugs back into K system when she comes home and will get continued out patient care.