It was about 7 am in the morning and Valerie and I were just
waking up. We didn't want to wake up. We were both tired, so we held each other
for a little more sleepy rest time.
Then it happened… I'm looking at Valerie and out of nowhere it
looked as if Valerie was being shocked by a Taser gun.. her body shook and her
face became contorted.. then she started blowing air out of her mouth with a
hissing sound and she was making puffing noises with her lips.
I had never seen this before, and I had no idea what was
happening to her and no idea what to do to help her. I held her tight against
me so she wouldn't fall of the bed as I dialed 911.
"NO not St. John's I said St. John… no S… zip code is
10314" I said, almost at the point of yelling into the phone…… I gave them
the cross streets as well.
This always happens when I call 911, they hear St. John's
not St. John. That's why I always give them the zip code as there are two
streets here that have similar sounding names. It's insane when you have an
emergency and you have to deal with this. One person died because of this
confusion several years ago and of course nothing has been done to remedy this
problem. Thank you city hall!
By the time the EMTs go to the house Val wasn't shaking and
seemed to be ok.
In the hospital, for the 6th time that year(2010) they ran
EEG tests. No seizure activity was seen. They put her on medications for
seizures anyway.
My god, it isn't bad enough she was having so many issues
due to Alzheimer's Disease, she now is prone to seizures.
That year, 2010 was when everything happened to her…
paranoia, hallucinations, short term memory was getting significantly worse,
she started not to recognize me, incontinence, violent agitation, a visit to the
psych ward after she jumps out of the car in the middle of traffic(on my birthday) and now the seizures. Several times at the
hospital, a few social workers suggested that I should think about putting
Valerie in a nursing home. I said no.
We eventually got
home care so Valerie could be home with me. That's what I wanted. Yes I told them, it is difficult to care for
her, but our system makes it almost impossible, and I will fight to get Valerie
help at home. Even had to go to court after they denied her home care. We won and got home care by Sept. 2011. And I
had just lost my job of 21 years back in July of 2011. The barriers in our system that continually
tried to prevent me from caring for the person I love seemed insurmountable,
but they are not. You have to fight to get help. You shouldn't have to. We are
a cure culture, not a care culture. We are ok in the short term, but long term,
we become fatigued and give up. There is
no cure for this disease, so you're going to have to find out if you have the
guts to care.
Valerie has had small seizures since that day (4 years ago
now) but last week it was pretty bad. Now since she can't speak, I don't know
if she is have a stroke or a seizure, so I didn't take any chances. 911 again,
the St. John's vs. St. John confusion again… all the while I'm holding on to
Val and telling her everything's going to be ok..
Same story by the time the EMTs arrive, she's ok, back to
the hospital… more tests that are all negative… no infections, blood work was
ok…. Back home that night with the ambulette.. We have 15 steps to the front
door of our house… it's now night time and I tell the ambulette driver the 15 steps
situation and tell him that if he needs backup to call now…
We get home around 10:30pm… 5 guys are putting Val into a
chair with straps to get her up the 15 steps on our block on St. John Ave. We get Valerie ready for bed… (our aids with
us thank god) and I throw a load of laundry in…
I can't sleep…even though I tired.
To see Valerie have these seizures is probably the most
difficult thing I have to witness… the feeling of helplessness is more than
overwhelming… but the need to take care of her trumps everything so even though
I am an emotional wreck, I do what needs to get done.
St. John Ave.
