Italy

When you wake up Friday morning I will be landing in Florence, Italy.

This is a trip we have planned for a long time.  The airline and hotel reservations have been in place for months.  Because our life is more predictable than it used to be, we didn't bother with trip insurance. Of course we were going to go.

Then, early in the summer, Steve's dad got sick and we weren't sure if the trip was going to happen so all plans were put on hold.

We brought my father in law here to our house and have round the clock caregivers. When he moved in here at the end of July we weren't sure what was going to happen. With the right kind of care, however, he has stabilized and is comfortable.  He lives in Maggie's room so our life has come full circle.

Steve's siblings encouraged us to go on our trip and they are both coming here to manage their dad's care while we are gone.  We couldn't do it without that help and I am very grateful.  I confirmed the reservations and made a few more plans. Somehow, though neither of us really got excited about this because of the situation.  I think neither of us believed we were really going to be able to go. Now were are just 36 hours away from departure and excitement is building.

As we make the final preparations for our trip, I find myself in the familiar position of orchestrating the needs of a medically fragile individual.  Though we never attempted a trip this long when Maggie was with us, the similarities are uncanny. Instead of shift nurses and therapists and bus schedules, it's visiting nurses, caregivers, and social workers.  Supplies are laid in and I will stock the groceries for the first part of the trip. There is also the matter of making sure Steve's siblings know how to use the remote and other household things, and know when to put the garbage out. And, because this is San Francisco, we have to warn them of the car break in problem and plethora of parking tickets.

I think it's all done. I think everything is packed. Passports are ready, boarding passes will be printed. Things will be forgotten and we will manage without them.

Ciao.

Riding off into the sunset.

Today was a hard day. After 2.5 years I finally donated Maggie's wheelchair today. 

It was time. But it is hard.

When Maggie was here, I would have gone to the mat with anyone who said Maggie's chair defined her. She was so much more than that stupid hunk of metal.  But after she died I could not part with it because it was part of her. It was her transportation. It went wherever she went and actually allowed her to get there, so it was also her freedom.  It was the only way she could really access her talker, so it was central to her communication. It was like a weird member of the family always in a prominent place in the house. (Had to be prominent, the thing was so big.)  When Maggie passed away the empty wheelchair was on the altar at her funeral. That was all we needed for people to feel her presence. 

So I guess if I'm being honest the wheelchair did kind of define her.

It's been sitting in our garage since February 2014 just off in a corner. Though I wasn't ready to part with it, I hated seeing it there. It made me feel guilty because that chair is full of bits and pieces that so many other kids can use. 

Now my father in law is moving in and has many special needs of his own. We need all the space we can get, so coupling that with my guilt over hoarding coveted parts of chairs, I decided to pull the trigger and called CCS (California Children's Services) and they were happy to take it.  I did ask that someone remove the cover with her name on it and give it to us and I'm sure they will. 

Since I sold the van I didn't have anyway to transport the chair, so they made arrangements to pick it up. As I wheeled it into their van I could feel the emotion welling up. I asked him to wait while I took a picture and held it together until he drove away. 

Just as the guy pulled away, my kind neighbor was coming down his stairs and greeted me warmly and was very surprised to see me in tears. The poor guy moved here after Maggie passed away and never knew her;  he had no way of knowing how significant that was, if he even saw any of it.  He just gave me a big hug and offered whatever help he could. But there's nothing he can do. It just is what it is. 

I know someone or several someones will get a lot of use out of all parts of that chair and that is how it should be.  It is sitting over at the CCS Medical Therapy Unit where Maggie spent so much time going to therapy and Girls ROck camp and Art Tech Camp. That unit is at 25th and Quintara Streets in the heart of the Sunset District of San Francisco. So the drama was complete.  It actually did ride off into the sunset.

And that made me smile. 

First, Have some charm

The basic tenet of the Hippocratic Oath is "First do no Harm." Doctors are there to help, not cause more damage. Perhaps that needs to be applied not only physically, but emotionally as well. Hence, the title of this post, "First, have some charm."

Someone needs to teach doctors some tact and manners. Not all of them, of course, but it only takes a few bad apples to make the whole bunch seem spoiled. Doctors are smart. Doctors are busy. But doctors are caring for people at their most vulnerable moments and because they are smart they need to remember that, no matter how busy they are.

My husband and I are the first responders for issues involving my father in law. He lives closest to us and that's what makes the most sense. We are happy to do it and he is very appreciative. Our past experience often comes in quite handy because the similarities between managing Maggie's care and managing my father in law's care are astounding.

Maggie as a disabled child was often ignored by the doctors even though she was the patient. Not doctors who knew her, of course, but doctors who didn't, for example those in the emergency room, or young residents when she was in the hospital . They would talk only to me and not even attempt to engage her. Obviously I spoke for Maggie so that was somewhat understandable, but a comforting word or pat on the arm would have been nice, not to mention the courtesy of telling her the plan. They assumed she didn't understand, which was wrong; but even if she didn't understand, take the time to speak comfortingly and engage your patient. Generally I held my tongue because it was easier. I am a big believer in the adage, "you catch more flies with honey."

[Note  all of Maggie's former medical providers just fell over laughing at that. I was not always the nicest person in the world, but I really did let a lot of little things go, so I could save steam for when I really needed to blow my top.]

The same thing happens with my father in law. He too is now disabled, but the issues in this case seems much more age related than disability related.  This morning he was taken to the hospital from his assisted living residence. (He is already back at home and is fine.) Steve actually arrived at the hospital before his dad did. Steve learned from the paramedics that Dad was ok - in fact they didn't think he needed to be transported to the hospital at all. (Separate issue altogether).

Shortly after arrival the young ER doc enters the very small room with my father in law right there awake and alert and probably not even needing to be there. Instead of finding out the situation he immediately starts talking to Steve asking, "How far do you want us to go? what is the plan here?"

 He might as well have said, "are we going to bother with this old guy at all?"

Really doctor, this is where you START? How about a question like, well, sir, what brings you here today? Oh, you can't hear me, ok I will 1) speak up or 2) get the story from your son and then we will decide the plan together. Instead he disregarded my father in law completely and wondered aloud if they should bother to intervene at all.

 Steve brought the doctor out of the room and let him know that wasn't cool, and the doctor said he got that from Steve's body language. That makes me laugh because I can well imagine what that looked like. Eyebrows UP, head cocked, chin tilted just so, arms folded..... We can only hope that doctor learned something from that body language.

Everyone knows the medical system is flawed. This event could have easily been handled at an urgent care site without involving the ambulance and paramedics and the unnecessary expense. Instead the resources are strained to handle this non emergent matter. Then when he arrives at the ER, the doctor treats him like he is not worth any time or effort despite his relative good health.

I wish I had a silver bullet to fix the medical system, but I don't. Fixing the attitudes is easier. Or it should be. Doctors: Treat every patient like you would want to be treated. Every patient, young, old, disabled, sick, afraid, hypochondriac, mentally ill and everybody else.

It's the Golden Rule.
And it's charming.

Press HERE

We have officially become part of the sandwich generation, whic includes those who are raising kids and taking care of elderly parents at the same time. I guess we have been in it for a while, but the sandwich metaphor is feeling particularly appropriate lately.

 Eleven days ago my father in law moved into assisted living here in San Francisco. To say it has been a rocky start would be a gross understatement. And not in the way you might expect, either. The problem is not with my father-in-law, who is about the nicest, most compliant man in the world. He is taking part in the activities and likes and converses with the other residents.  The problem is that the place he is living has made a series of errors that are making the transition more difficult. None of the individual issues is hugely problematic, but taken together, they are scaring all of us. And we are spending hours and hours every single day trying to smooth things over and keep the transition on track.

Yesterday for the first time we utilized the shuttle service to take Grandpa to the doctor. I met them there and arrived early so that I wouldn't miss them. Good thing too, because they arrived at 1:30 for a 2:00PM appointment. The driver told me to call when we were ready and he would be in the area because my father in law was the only rider yesterday. Excellent. I told him to expect a call around 2:30. Doctors office went swimmingly and I called the place at 2:35 to have them contact the driver.

We waited and waited and waited.. After 45 minutes I called again and was told "they were having trouble reaching the driver." (I found out later they were calling the wrong number)  After another 10 minutes I decided to drive him myself, but that meant an extra hour by the time I got the car, got him loaded in, drove out there and returned home.  Not only that I had to leave him alone while I ran to get the car which was a block or so away. That made me incredibly nervous, because he's pretty defenseless.

As I ran to the car I called home to see if there was someone there who could help the Nurse lift and care for Maggie. There was so I was OK on that front.

I loaded Grandpa and his wheelchair into Maggie's van (and how many family's will have a wheelchair van handy?) I had to tie it down because he is not set up for the "ez lock" system we have. An ambulance driver could see I was flummoxed and offered to help, but I figured it out. I told the ambulance driver this was the first time I ever loaded this particular chair and perhaps he would consider just staying behind us as we drove across town. He laughed. I laughed too - but I was only partially kidding.

We had to stop for some supplies on the way home and once again I had to leave him alone while I ran into the drug store. He was in the car, so I wasn't too worried. As I paid for my strange combination of purchases and entered my phone number to get the points, the lady looked at me and smiled and said, "It's senior citizen day and there's a discount." I wondered how she knew that these purchases were for a senior citizen who was outside in the car. Then it dawned on me. I felt very tired and asked her, "And I'm a senior citizen?" She nodded excitedly and I received 25% off my purchase. That was about $20, so I decided to take the good with the bad. When I told Grandpa he said, "good I'm a senior citizen." I just looked at him and said, "Bad news - so am I." He liked that quite a bit.

When I returned to the facility they knew I was not happy. When one of the bosses asked what they could do to set my mind at ease I said simply "Stop screwing up. Let's go a few days without a screw up. That will help tremendously."  Seems simple enough.

As I drove across the City with Grandpa strapped in (fairly) securely behind me I considered how completely ridiculous all of this is. Once again we take things to the extreme. We are raising a profoundly disabled daughter and dealing with a newly disabled parent.

 I told Steve if the norm is a sandwich, we are a panini - being pressed from both sides.

At least paninis are delicious.


Things will settle down, won't they?

From Angelina with love.

My Uncle Jack Casey passed away the other night. He was a great guy and I am sorry he's gone. He was 91 years old, and he lived every single one of them. He was still driving and and going to work right up until he suffered a stroke in December.

I come from a large Irish American family. Jack was one of seven kids. One died in infancy but the other 6 lived long busy lives producing 32 children between them. With his passing, my mother is the sole survivor of those siblings. That is hard to believe because each personality was so distinct and such a part of my life, I can't imagine they are all gone. What a reunion must be going on in heaven now!

Jack was the patriarch, the host of the family reunions, the teller of family stories and the keeper of family history. Many of us heard the stories multiple times, some only once or twice. Once you heard them, though, you didn't forget them. Thanks to Jack, my kids know about my great grand father Michael Casey as well as their own great grand father (my grandfather) John Casey and their contributions to San Francisco and to our family. That is a tremendous gift for which I am ever grateful.

Uncle Jack also had a great sense of humor. When I was a kid I was just a little bit darker skinned than all of my fair Irish cousins. There were several blonds, a few redheads and many brunettes. Even the brunettes had the fair Irish skin, though. Except me. I had dark hair, dark eyes and eyebrows, and skin of a more olive complexion. Because of this my Uncle Jack thought I looked Italian and always called me Angelina Baciagalupi.

And I always answered to it.

The other day my mom and I went to see him in the hospital. We knew from his kids that the end was near and wanted to visit. My mom was at his bedside and though he was weak and half asleep,  it was clear that he recognized her and was happy to see her.  I was next.  I wondered if he would know who I was. (He was Uncle Jack to a LOT of people). As I leaned over to kiss him, I remembered what would set me apart and said,

"Hi Uncle Jack, it's me. Angelina Baciagalupi."

His face reacted immediately. My cousin Alice, his youngest daughter said," Well THAT brought a smile." Alice didn't know the reference because she is younger than me. The whole Angelina thing was done by the time I was about 10 and she was too young to remember. I pulled that out of the deepest recesses of my childhood memories. Besides, even if she was old enough to remember,  I like to think that was something just between Jack and me.

It probably wasn't necessary. Uncle Jack knew exactly who was who and what was what until he drew his last breath. But getting that last smile from my Uncle Jack, a guy who was always smiling, made my day.

Godspeed Uncle Jack. Thanks for everything.



Nobody laughed harder at Jack's stories than Jack himself.

Jack's obituary in the SF Chronicle is  here

Grouchy Camper, Grouchy Counselor

Mom Camp is almost over. Summer school starts on Monday. That's a good thing because the camp counselor is getting quite grouchy, and the camper is becoming more difficult to please. When Maggie is out of school I lose the only time I have to myself. Maggie and I have fun together, but everything becomes more difficult and more time consuming. She's bored and I'm frazzled, which is always a very helpful combination.

Yesterday we did our gardening project and everything looks lovely. Maggie was really not that interested at all, though she did enjoy watering our newly planted flowers and herbs this morning. Here are two of the five containers we planted.

We then made a quick trip to the mall, Maggie's favorite place on earth. We were shopping for Grandpa who hit the big 8-0 yesterday. A helpful clerk took us all over the store looking for shorts with elastic in the waist that were not basketball shorts.   He seemed to forget that I was pushing a huge wheelchair as her darted through racks and narrow openings. Finally Maggie and I just stopped and stayed where he could see us so we didn't get stuck somewhere.

By the way, Maggie would like everyone to know that a trip to the men's department does not really count as a trip to the mall. She was quite peeved at me.

The nurse arrived but that doesn't really give me a break because she can't do anything on her own anymore. I had to fetch all the supplies downstairs, lift Maggie and help with all the procedures. I had to time things right so I could be gone for awhile as I wanted to go to dinner with Steve and his dad for his birthday.  Steve was already in the East Bay and was going straight to his dad's so I planned to take BART out there. Before I could do that, though, I to arrange for Tim to be around to help with the next set of procedures so I could go.

When the most relaxing part of your day is a commuter train ride out to the East Bay, it may be time for a break.

The three of us went to dinner and them came back to the house for cake and pie with Steve's cousin Jenny and her boyfriend Scott who live in the house with Grandpa Ed.  The rest of the family will celebrate this weekend at (yet another) graduation, and again in a few weeks at a family reunion; but we didn't want the actual birthday to slip by unnoticed. Ed enjoyed his day, which was the main goal.

Of course two of the three things I bought have to be returned, so Maggie gets another trip to the men's department. She's thrilled about that.

We are both ready for Summer school to start.

Grandpa Frank

In my father's retirement years he was "discovered" by a talent agent while walking through a mall with my mom. He started an acting carer which consisted of occasional commercials and several "extra" roles in movies. Generally he was in the background somewhere and you never really saw him unless you knew were to look (which we ALWAYS did). There was one movie, Angels in the Outfield  where he had a real role, though no speaking lines. He played the third base coach in that movie. He was visible numerous times and actually had one frame with just his face. I can tell you it is very strange to see your dad's face on a movie screen that's as big as a house.

The movie came out in 1994 (the year Maggie was born) and was filmed in The Oakland Coliseum. I remember going over there after a court appearance all dressed up like a lawyer and watching the filming for a while. It was fun for everyone, but no one more than my dad.When the movie came out on video the boys used to watch it over and over shouting "There's Grandpa" whenever his face was on the screen. They knew when it was coming and each tried to beat the other by yelling it first.

Eddie recently happened upon the movie on DVD and bought it. He watched it last night, while wearing the very same  hat Grandpa wore in the movie. He kept texting me lines from the movie. I was sitting at the Giants game with Tim and Steve and we were all laughing at the lines which were especially ridiculous out of context. .

Then he must have stopped his movie to take a picture of the one shot featuring my dad's face. which he sent to my phone. The message that accompanied this picture from his television screen. 


"Miss him. But he sure does look Gangster in that hat." 


I laughed out loud. My dad was many things, but "gangster" was not one of them.


My dad was told to look shocked as a runner is bearing down on him. After raising seven kids, nothing really shocked him, but he pulled it off. He was a natural

Eddie said he stilled yelled "THERE'S GRANDPA!" every time he came on and wondered if that was weird. Not to me, but I know his girlfriend was a bit confused. 


Eddie said in a later text that seeing Grandpa (who died in 2007) moving around on the big screen kind of bummed him out - but I told him he completely make my night. . 

Sunshine!

Ahh Monday. The bus has come and gone and taken Maggie to school. We were happy to bid each other adieu. It was a nice weekend - incredibly nice weather wise. And today is another spectacular day.

This is actually typical June weather in San Francisco. The rain earlier in the month was freaky, but the wild flowers from all the rain are spectacular. I took this with my phone as we were walking up at Lone Mountain on the USF campus (about 6 blocks from here). Actually it was foggy by the time we finished this walk, but earlier the day was great.

 The fog rolls in just in time to screw up the 4th of July fireworks and stays until September. Today will be 78 and perfect. July  and August will be 58 and foggy. We learn to enjoy the good days while they last.

Yesterday we went out to see Steve's dad  and make him breakfast. He lives about an hour from here, but with Maggie that might as well be 10 hours. It is just very difficult to take her anywhere. It is much hotter out there and Maggie was pretty listless in the heat. But then again, so was I. We are temperate climate people.

Steve's dad lives in a split level house. We can get Maggie into the Family room from the back yard because it is at ground level. There is also a bedroom/office and a bathroom on that level. It is open to the kitchen/breakfast room, but those are 3 or 4 steps up. Then the bedrooms are up another full level. Despite the relatively easy access to the family room, it is actually more difficult to maneuver Maggie and her wheelchair in this house than in ours. We were eating breakfast about 10 feet from where she was sitting and she kept saying "Dad, I want to go upstairs." It was a bit heartbreaking. She could see and hear us perfectly well, but she wanted to be included at the table with us.  

You might think it would be easy to just bring her up there, but you would be wrong. We have learned that sometime we just cannot do it. Maggie weighs 76 lbs and her chair with all the equipment on it weighs about 140. We cannot do the lifting to get her upstairs knowing we will just have to bring her back down. Maggie survived and we went back to the family room as soon as it was done, but I felt bad.

On a happier note, our friends Mark and Vicki stopped by. They have been bringing my father in law dinner every Sunday for well over a year now. God bless them both. Mark and Steve have been friends since high school and they live fairly close to my father in law. They brought beanie babies for Maggie to fling around the room and she did not disappoint. It was great to get to visit with them.

Mark found this card and thought of us. I laughed so hard I had to scan it when I got home. This is taken at the Legion of Honor about a mile and a half from here. It explains a lot about both our raccoon problem and the problems with the Muni (San Francisco's bus system)

Enjoy your Monday!

Hit the Road, Jack.

Today is a furlough day in San Francisco. The public schools are closed because of the State's budget woes. I'm sorry, but in what universe does this make sense? Not this one. Ok, enough with the rant.... just know I'm thinking it.

Because of this furlough, Maggie is home this morning. She found that quite intriguing. Of course it was not a typical Monday because Grandpa Ed was still here, and that was just a bonus for her. Maggie sat in her chair demanding breakfast and music and all sorts of things. Grandpa was laughing at her and she was enjoying the attention.

At about 7:30, Grandpa asked me if Steve had already left for work. I just laughed and said I doubt he's up yet. Steve moves verry slowly in the morning. If he doesn't have an appearance, he tends to leave for work around 8:30 or so. Maggie is long gone to school and I'm well into my day before he goes. He came downstairs all dressed up in his "lawsuit" and sat down for breakfast. He greeted Maggie, and chatted with his dad. Maggie continued her demands and various statements. "Mom, I want to go to my car." "Mom, no school." "Mom, Fely come see Maggie" (Fely is Maggie's nurse who was scheduled to arrive around nine or so). My father in law was impressed with Maggie's skill.

Things quieted down. Steve and his dad were reading the paper, I was on the computer. Quiet is not Maggie'sfavorite sound. Maggie was working away on her talker. I heard "Dad." and then "Dad. GO!" and I knew what was coming. She worked some more clicking and moving and clicking on that talker and then said

"Dad. go to work, dad."

All four of us started to laugh. Maggie was delighted. She was the center of attention once again. I had to snap a picture of the message window on the dynavox. We will just leave it at Steve's place in the morning if he's not moving fast enough. You can also see how pleased she was with herself.