and young girls they do get weary
wearing that same old shabby dress
but when she gets weary
try a little tenderness"
oh Otis- how right you were. How much a little tenderness, a little love and a few soft words spoke so gently, can some how just make it all easier to bare.
Last saturday we left the hospital and came home. Sigh. It is always so good to get home after the hospital.
Mom is making progress everyday, and she is getting her life back slowly. We spent 18 days in the hospital. And we are all so much happier to be home.
Although Cedars is considerably better than St. Johns (where we were in april) a hospital is still a hospital and this one had it's own drawbacks. For one, our room was small- asses and elbows small. I have bruises on both legs from hitting the arms of this one fucking chair.... i hate that fucking chair. Also Cedars is in west hollywood, which, day after day is a schlep.
To tell you what life was like there- i will quote Dad. He wrote this there, and I think it explains it quite well:
I DON’T THINK MORE THAN A FEW MINUTES EVER GOES BY WHERE YOU AREN’T DOING SOMETHING- FEEDING , GIVING MEDS, COVERING UP- UNCOVERING- TURNING ON A SIDE , LAYING ON A BACK, DEALING WITH A NECK PAIN- DEALING WITH SORENESS THAT COULD BECOME A BED SORE IF NOT ATTENDED TO- GETTING A DRINK, MIXING A THICKENER IN SOMETHING TO DRINK, GETTING DRSSED, GETTING UNDRESSED, TAKING AN OUTING DOWN THE HALL OR DOWN TO THE PLAZA, MAKING SURE THE NURSE IS PAYING ATTENTION, TO MUCH LAXATIVE- TOO LITTLE LAXATIVE, FINDING THE FACE CREAM, GET A HUMIDIFIER EVEN IF ITS NOT ALLOWED, GETTING TO THE COMMODE, GETTING BACK IN BED, FINDING A NURSE, WATCHING THE THERAPISTS- OCCUPATIONAL, PHYSICAL AND SPEECH, FOLDING OUT AND DRESSING THE COT TO SPEND THE NIGHT, FOLDING UP THE COT AND BEDCLOTHES TO MAKE SOME ROOM, JUGGLING THE WHEELCHAIR, WALKER, IV, FLUFFING THE PILLOWS, ANSWERING THE EMAILS, ANSWERING THE PHONE, TALKING TO THE DOCTORS, READING THE GUIDELINES FOR THERAPY,GOING FOR ICE, ORDERING BREAKFAST, LUNCH AND DINNER FOR EVERYONE IN THE ROOM, ARRANGING WHAT NEEDS TO HAPPEN AT HOME , MAKING SURE THE DOG IS COVERED, SCHEDULING FRIENDS TO COME IN TO VISIT, DEALING WITH THE ODD PANIC ATTACK, GUIDING THRU THE OCCASIONAL COUGHING , SWALLOWING SPASM, WASHING UP IN THE EVENING AND THE MORNING, GETTING TEETH BRUSHED IN THE MORNING AND EVENING AND WHENEVER, RINSING WITH MOUTHWASH 3-4 TIMES A DAY, MARKING THE DAILY JOURNAL WITH PROGRESS REPORTS, FIXING THE FLOWERS, GETTING HOUSEKEEPING TO CLEAN UP, CHANGE THE SHEETS, MOP THE FLOOR ...... AND MAKING THE NECK COMFORTABLE....
It was, exhausting to say the least. Dad and I switched off sleeping there. He took two nights, I took one... Mom cannot stand or walk yet, and so every time she got up to use the bathroom, we had to get up and help her. And because her neck is still so fucking sore, anytime she changed positions, she needed help as well. And so, "sleeping" at the hospital, didn't really entail much sleeping. Dad and I were becoming zombies.
(The first thing we did when we got home was order a night nurse. We have had two nights of solid sleep and already everything seems easier.)
Mom made some really good progress in rehab, I think she would have made more- but we had a little setback... mom had a nightmare on a thursday night (the 9th) and it was bad enough that she talked to her doctor about it, and bad enough that she aggressed to see a psychiatrist about it. The shrink asked is she would like to take something to help her sleep- we agreed. So he gave her Ambien. 5 milligrams, which was WAY TOO MUCH for her. And after that night.. and continuing since, all the progress she had made with walking was wiped clean ,and now she has trouble simply standing.... it was as if the Ambien put her balance to sleep- and only now a week and half later it is only finally starting to wake up.
The real bummer about that was, that i feel like we lost precious time in the Rehab unit, because while her body was dealing with basically being drugged, she wasn't doing all she could in physical therapy, because her body was so unresponsive. And, anytime I tell a nurse or a doctor about that, they look at me stunned and say- he prescribed a stroke victim Ambien?!?!?! Tisk Tisk. Well, that doesn't do us a lot of good now... except to forge on.
Now one thing that she has been "practicing" three times and day (and then some) is her swallowing. Mom has a voracious appetite, and immediately after the stroke, chewing, swallowing were all a problem... now, while still eating soft foods, she is doing TONS better. Her voice is better, stronger, lower.... and thank god. Thank fucking god we can communicate with mom. Wow. She makes the odd joke, says cute things- like after spending the first hour with her night nurse sharon last night she announced "I like you Sharon"... it was pretty cute.
At this point I feel as though we have two major bridges to cross:
The first is swallowing liquids. (I think we are just a few weeks away from this goal). Right now she has to have all liquids thickened- which she hates. Cuz lets face it it's foul. When you want a nice refreshing sip of water and it's thick and slightly chalky tasting from the thickener... it's gross and not quite the same refrenshing sensation. So she isn't drinking very much, as you can imagine. But she used to not do liquid at all, now at least she has juice and some thicker liquids.... the progress is obvious.
However, until she is drinking normally, she has to have an IV at night. It is just saline, and it is just to keep her hydrated. But it's a pain in the ass, and it is the presence of hospital equipment in the house- which is grim... so we need to get her drinking water so we can get rid of the IV. Thats step number one.
Step number two, is quite literally, a step: walking... we have got to get her walking... until she can walk- we need a night nurse, she can't take herself to the bathroom, she needs CONSTANT supervision... until she is walking we can do nothing but practice all day. And we have our work cut out for us.... but we practice all the time. This afternoon we have our first at home physical therapy.... we will have a therapist come at least three times a week, and dad and I are looking into supplementing the insurance-sent doctor with our own therapist an additional 3 or 4 more days a week. At least for now...
As far as the cancer treatment is concerned- we will deal with that soon enough. We want to get her a little stronger before we do anything. But the plan is- on the 28th to do a full rescan and see where we are at. She is still taking her daily oral chemo- Tarceva, but for now there will be no big intravenous chemo. That shit was TOO HARD on her system, and, we think probably the cause of the stroke in the first place. She was taking something called Avastin, which most of the time does wonders, but can, in rare cases cause blood clots. We were one such case, and combine that with her getting super dehydrated- bang- that's when she had the stroke(s). So for now we are on hold, getting her stronger and better. Hoping that the Tarceva will continue to work and keep the cancer at bay... i have a theory that the Tarceva is gonna finish the job us. Mom had a dream some time ago that she was shaking hands with a bottle of Tarceva. Silly, I know, but Tarceva is her friend, and it's gonna kill this cancer and save my mom. I just feel it.
Aunt lois comes tomorrow. Which is great. And actually, Tate and I are going away this week- going up to Orcas Island in Washington State to a wedding. Then we come back for a week and leave again for two weeks- one week in upstate NY for another wedding, and then 6 days in Ireland. Obviously all these plans were made ages ago, and we talked about not going- but after some deliberation we have all decided that we should still go... so. Aunt Lois will be here that whole time we are gone- so Dad isn't doing all this alone- and Carter and Nikky help out on the weekends (actually Carter showed up every morning at 8am in the hospital to bring coffee and croissant to dad or I while we were at the hospital.... a serious trooper)... And then, if we need more nursing help, we'll just -get it.
But it's hard man. This is some serious shit.
Mom had a stroke. And that shit takes a long long time to recover from. Walking, talking, swallowing, dressing- she has to relearn all of it. And she gets tired, and her neck hurts and it's sometimes so overwhelming.
Sometimes you just want to stay in bed- but you can't- it's not an option. Much like a new parent, sometimes you just want to go back to your old life and stay out late and sleep in, and relax and unwind- but there is a child to consider and there is more love than you have ever known, so you wake up and you feed, and clean, and take for walks and teach the world to your child....
and thats kinda what we are doing.
Mimi Wheeler and Santiago Ortiz (Laura Donnelly's daughter and son in law) had a baby last week! A perfect little man named Felix Claudio Ortiz. He was born on the third floor while my mom was up on the seventh. And yesterday they brought him to the house so mom could finally meet him. (and, as I am the god mother I needed to get my mitts on him too). They had seen her in the hospital. And then a week later they came to the house. They could see an improvement. "Much better" they said. I guess I don't see it as much cuz I am here everyday.
But it's true- she is much better. She feeds herself. (didn't use too). She stands while she brushes her teeth and washes her face (couldn't do that before). She drinks juice, like tomato and prune (no way could have handled that before). She smiles and makes jokes (something she definitely wasn't doing two weeks ago).
And so we try. We try being funny, and stern, (she calls me a drill sergeant cuz I make her do exercises and stand and walk and all that), and we try kindness,and softness, and patience and even, even a little tenderness.
And somehow- being tender... it just, makes it easier to bear. Because we are all weary, and we are all waiting, anticipating the return.... the return of mom- to us all.
And she's coming back. Bit by bit. She comes home a little more- everyday.
So, you all- you big ol' extended team. As always, thank you for your love, support, thoughts and prayers
we remain, ever patient, and a little tender
and always
Team Carter
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