• entries
    58
  • comments
    253
  • views
    6,313

About this blog

stroke of genius (not really, but it's a good title!)

Entries in this blog

My how things change...but not really

Well, it has been 2 years since Larry's stroke. Obviously I have moved on quite a bit, since I haven't been on this site in a long while. It's funny how it works - as long as I keep moving, it's like when you are swimming and your hair streams out behind you - you don't even notice it. It's only when you stop, and it swirls around you, that you notice it's there. I keep very busy, and for the most part don't give myself a lot of time to think about how much has been lost or what has changed.

avantgardener

avantgardener

wow, I am really lucky!

I just read all the posted responses to my "anniversary' blog message...I can't believe that so many people remember me after I've been so remiss about staying in touch. Guilt! Guilt! But, so good to know that you are all here.   Larry and I made it through the day pretty well. It hit me a couple of times, but the good thing about being this busy is that you just don't have time to feel too sorry for yourself. I reminded Larry tonight that it's been a year, and started telling him abou

avantgardener

avantgardener

Can it really be a whole year??

Tomorrow is the anniversary of Larry's stroke - and though it certainly won't be an anniversary that we'll celebrate, I will definitely be marking the day. I'm proud of us both for having lived through this and come more or less out the other side. There were many days when I didn't believe that was going to happen. Looking back on the last year is in many ways like reading about someone else's life: interesting, but very third person. There's a weird detachment, especially in the early wee

avantgardener

avantgardener

Happy new year!

I started keeping an informal diary/journal when Larry first had his stroke, mainly because I found that so much was happening so fast that I could not remember from one day to the next what was going on if I didn't write it down. At first I wrote in it every day, and the handwriting is very dense and cramped and anxious-looking when I go back and read the entries from those first weeks. As time passed, there were days when I wrote only a few sentences, or nothing. The writing loosened up and

avantgardener

avantgardener

Coumadin

Well, here I am again.   Things have been pretty up-and-down for the past month. Larry landed in the hospital twice - the first time because he was having atrial fibrillation, and the second time because of a bad reaction to Coumadin, which he was given as part of the a-fib treatment.   The Coumadin caused Larry to have internal bleeding, and he ended up with a major hematoma around his kidneys. The hematoma pressed on the kidneys so that he couldn't produce urine, and of course that

avantgardener

avantgardener

Remember me??

I'm embarrassed by how long it's been since I've written here. Insert all the usual excuses - no time, too busy, etc. etc. - all are true!   I guess the real reason is that I've come out the other side of the initial craziness, and am not feeling as needy as I did at first after Larry's stroke. Weird as it may seem, all of this has become a routine, and although I would never have chosen it, this is our new life and we've adjusted.   It's been 7 months since Larry's stroke. Seems like

avantgardener

avantgardener

Remember me??

I'm embarrassed by how long it's been since I've written here. Insert all the usual excuses - no time, too busy, etc. etc. - all are true!   I guess the real reason is that I've come out the other side of the initial craziness, and am not feeling as needy as I did at first after Larry's stroke. Weird as it may seem, all of this has become a routine, and although I would never have chosen it, this is our new life and we've adjusted.   It's been 7 months since Larry's stroke. Seems like

avantgardener

avantgardener

Not a newbie anymore

It's been really busy around here, and I have not had much time to write. The days seem to get away from me, and are gone before I know what happened.   Larry's been a bit under the weather the last few days - nothing serious, but the heavy duty antibiotics that he's had to take because of his recent urinary tract infection have wreaked havoc with his system, and not to give too much information, but if I say that it's been a purgative experience for him you will get the idea. We will both

avantgardener

avantgardener

Adjusting

It's been a pretty good week, all things considered. I'm still a bit sore from the surgery, but nothing major, and I've been able to go back to work with no problems. I feel a bit guilty about how much I liked being in the hospital - maybe it's because they wouldn't let me eat, so I didn't have to put up with hospital food! I lost 10 lbs, which means I'm down about 50 lbs now since Larry's stroke, and I feel wonderful - I suspect now that the gallbladder problem was creating symptoms for abou

avantgardener

avantgardener

Surprise!

Well, I was right - I shouldn't have asked what was next!   I haven't been on this site for a few days, because I had unexpected gallbladder surgery on Tuesday. We were having dinner Sunday night and I was suddenly in excruciating pain; I had to call 911 after 3 hours when it still had not passed. It turned out that I had gallstones and pancreatitis, so the gallbladder had to go. The surgery went fine, and they sent me home yesterday afternoon. I'm sore now, but all things considered I

avantgardener

avantgardener

"What Next?", she asked, not really wanting to know

Wow, it's been a while since I've been able to write here. There has been a lot going on - my mom had a stroke earlier this week, and that has certainly been eventful. Hers was on the right side of her brain in the occipital lobe, so her speech is not affected, but her balance and coordination are, and she can't seem to see anything in her left field of vision. She was in the hospital having heart problems when it happened, and that was good because at least they caught it right away. She ha

avantgardener

avantgardener

Deconstruction for Dummies

Larry has always been an inveterate writer of notes, and I find his scribblings all over the house (I affectionately call them FLNs, which stands for "F***ing Little Notes", and they are everywhere - tucked into magazines, jotted on Post-It's and stuffed into books, written on the realtor's free note pads. As he watches TV late at night he woudl make notes about anything that he found interesting and then go research it later. Just part of who he is and I was not pahing a lot of attenion. I s

avantgardener

avantgardener

Kaiser fan club

As for this day: Let me just say that I couldn't make this one up if I tried...   Larry's occupational therapy was scheduled for 2PM, and he could not have been more cooperative. Cecilia (his caregiver while I am at work) and I had it all planned out perfectly. The transit service picked them up right on time, and got them there at 2:00 on the dot. Cecilia had the exact change for the shuttle, as required, and also had the Access Paratransit ID card, Kaiser ID card, notebook, and all the

avantgardener

avantgardener

Kaiser fan club

As for this day: Let me just say that I couldn't make this one up if I tried...   Larry's occupational therapy was scheduled for 2PM, and he could not have been more cooperative. Cecilia (his caregiver while I am at work) and I had it all planned out perfectly. The transit service picked them up right on time, and got them there at 2:00 on the dot. Cecilia had the exact change for the shuttle, as required, and also had the Access Paratransit ID card, Kaiser ID card, notebook, and all the

avantgardener

avantgardener

Appointment Issues

I have about had it with Larry, and with Kaiser, and with just about everything else right now. I have that feeling that if ONE MORE THING happens I'm not going to be able to handle it...and then what? It's not like I can quit or take a vacation or something.   After long and frustrating conversations with Kaiser, I finally got Larry a speech therapy appointment for yesterday. He has had no speech therapy since his discharge from the nursing home in early June, and has made zero progress

avantgardener

avantgardener

Another week bites the dust

Time really goes fast when you are pulled in so many different directions. Work has been crazy this week, and I've been putting in 12 hour days again. Larry's caregiver comes at around 6:30 AM (she's not due til 7:00, but is always early, bless her heart!). I leave as soon as she gets here, then work until 5:30 or so, then drive home and try to send Cecilia home but 6:30 in the evening. She's supposed to be here til 7:00, but I think both of us like the 6:30 to 6:30 routine better. After sh

avantgardener

avantgardener

Lack of motivation and what to do about it

The one thing about my dear, sweet Larry that captivated me from the very hour that we met is that we are so totally alike in so many ways - and that is good, and bad. The first day I met him I told my mother I was going to marry him. She had met him that day too, and agreed that it was going to happen, and if you knew my mother you would know that's pretty amazing! It took Larry 2 years to figure it all out, but that's OK - I knew it was going to happen eventually. Anyway - the bad part of

avantgardener

avantgardener

Settling into the routine

Larry's settling into his routine pretty well now that he's home - maybe a little too well. He's not enthusiastic about doing his therapy exercises, to the point where both the PT and the OT have pretty much signed off on coming to the house anymore because Larry's "not making any progress". I think there are a lot of reasons for this, and I think that getting him back into an outpatient setting for the therapy may help. We have an appointment on Monday with his primary care doctor, who is th

avantgardener

avantgardener

The long weekend

Actually, the long weekend FLEW by. One thing I've noticed since Larry's stroke is that there are even fewer hours in the day than there were before - and I thought I was busy before this happened. I'm trying to make a conscious effort to discriminate between what has to get done and what is just obsessive/compulsive housecleaning stuff (which I have a lot of since the stroke).   My one big goal for this weekend was to get Larry's hair cut, and I never did. His sister, Judy, bought a hai

avantgardener

avantgardener

A really good day!

It's been a very busy week, with lots of adjustments for everyone. Larry had some good days and some bad days. He did well overall though, and does seem to be adjusting to Cecilia being here. Having Judy (Larry's sister) in the house for the first few days was wonderful - she was able to watch over everything, get Cecilia oriented, take Larry to his appointment for the transit service evaluation, and just generally be a lifesaver every day. Not to mention totally spoiling us with gourmet mea

avantgardener

avantgardener

Emotional lability, or meds, or???

A difficult day for Larry, and for everyone around him. Today was his evaluation appointment to see if he qualifieds for Access Paratransit, the public transportation service for people with disabilities. Larry's sister, who is an angel, is here visiting from out of state and took him while I was at work. The service sent a van and picked them up, and took them to East L.A. for the appointment; quite a long way from where we live. The whole thing took 4 hours door to door, which is the longe

avantgardener

avantgardener

Getting along

I think that I was so scared about what this weekend would be like that no matter what happened it could not possibly have been as bad as that. And sure enough, it wasn't. Larry and I both had some moments, and there are a lot of things I need to learn, or learn to do better, but it really went pretty well. It's great having him home again.   The home health nurse from Kaiser was here today and answered some of my questions, like: Are you supposed to have to squeeze the catheter bag to em

avantgardener

avantgardener

Easy as Changing a Diaper!

Hoooo, boy! It's been quite a day. Larry is HOME, finally, and sound asleep in his new hospital bed, which was delivered at the 11th hour by the DME company. I thought for a while today that I would have to put him on an air mattress on the floor, but fortunately almost everything got here before Larry did.   Eric and I went to get Larry late this afternoon. We loaded him into our van, which was not easy because the seat is so high. We probably should have brough the car, but it's so sma

avantgardener

avantgardener

Christmas Eve but without the presents

So, tomorrow is the big day! A lot of water under the bridge since Larry's stroke on 4/22 - nearly 2 months in the hospital, rehab and the SNF, it seems like forever. I'm sure it seems even longer than that to him. He is finally due to come home tomorrow.   His new caregiver, Cecilia, wa there again all day today and had a lot of instruction. I'm getting the idea that she doesn't know as much as initially presented, and I feel like it was well worth paying her for yesterday and today so t

avantgardener

avantgardener

A lot to do!

Well, the clock is ticking. Larry is scheduled for discharge late Friday afternoon from the SNF, "Country Villa" (in the interest of truth in advertising, it should actually be called "Concrete Wheelchair Storage Yard", or "Old People Warehouse", or something like that). I've been scrambling around this week getting all of the necessities together, and I think I've got most of it.   Cecilia, Larry's new caregiver, was at the SNF with him all day today. She got there at 7AM and was still

avantgardener

avantgardener