I returned home from an extended long weekend last night, so walked
over to see dad tonight. Found him in the door of his room, his
feet kind of tangled in the footrests of his wheelchair. He didn't
recognize me at first and was agitated about something, so I took
a few moments to calm him down. I suggested we go downstairs for
an ice cream and he readily agreed. As we were waiting for the elevator,
I noted that there was a travel movie at 6:30 so I asked him if
he would go to see if he liked the movie. He agreed so we went down
to the rec room but I sensed he wouldn't last. The movie came on,
about the rain forest on the west coast and I was right...he got
restless and demanded to leave. As much as I hate to admit it, I
think even the visuals in a movie are beyond him now and I don't
blame him for getting frustrated.
So we went
outside to sit and I walked across to the variety store and got
him some chocolate ice cream and a small bag of cheezies. When it
comes to dad, food reigns supreme...nothing gets in the way! He
enjoyed the ice cream and started on the cheezies but announced
he had to go to the bathroom so I took him upstairs; as usual there
was no-one around to help me as his nurse was on break, so I asked
him if he could wait. He said yes and I filled the time by cutting
his hair. Help finally came but it was too late for the bathroom
call. We got him cleaned up and ready for bed; he was very patient,
partially I think because the nurse was quiet and relatively gentle
with him and spoke to him constantly. These things make such a difference
in how cognitivly impaired people react to personal care...I wish
all staff would figure it out. I sat with him, rubbed his back...I
could feel the deformities the arthritis has caused...and he went
off to sleep very quickly.
saw him today and was not concerned about his weight loss..8.8 kg
since January. He did prescribe Ensure at night and I will try to
get more calories into him. I am not happy about the loss but he
is eating well.
Today was one for the books! It was very hot, too hot to take dad
out so I waited till supper time to see him. I gave him supper then
suggested we go for a walk to the village, always a good idea for
him. We started out, knowing that storms were in the air. We stopped
for a chocolate ice cream, which he thoroughly enjoyed and continued
on our walk until I began to hear rumblings of thunder. I told dad
we should head back to the village for shelter; he became a little
agitated but I explained why again and he was OK. Well, we made
it just in time, as the heavens opened, together with loud thunder
and lightening. I kept watching dad to make sure he was feeling
secure enough. He was quiet but certainly not perturbed. After about
half an hour the rain eased off and I decided to make a run for
We were fine
until about half a block from dad's when once again the rains came.
So I started to run, pushing dad through big puddles, all the while
getting wetter and wetter!. We found haven under a large overhang
of the building next to dad's; by this time he was not a happy camper.
He was wet and starting to shiver, even though it wasn't cold. I
took his towel and wiped off his face, arms etc. and told him we
were almost home. Inside myself I was thinking...please God don't
let him get pneumonia...
The rain eased
once again and against dad's wishes we made the last dash, down
the driveway and up his, rather risky with the pavement so wet.
At one point I almost lost control of the d... wheelchair. I got
him upstairs and dried off. I changed his shirt but since it was
almost time to go to bed, we decided to get him ready. Once again
I helped with this process but dad was calm; I think he was exhausted
with all the commotion. I told him I would sit with him; I rubbed
his back and he went to sleep immediately. He is off all sleeping
aids and is sleeping well, so maybe we are past the months and months
of his spending half the night up in his wheelchair by the nursing
station. I regret having to run with dad in the wheelchair because
it was dangerous but I am glad we sat outside during the storm.
Things like this keep him connected to a more normal life.
Last week I was called by a film company about appearing on a TV
show about delirium. I explained my experience with dad after his
hip surgery and they decided to use us for this show. Today was
the day of the shoot. The crew started at my place, filming me telling
my story which is: in 1994 dad fell while at home and broke his
hip. He waited in emergency about 24 hours for surgery. After it
was over, I visited him briefly. He was very sleepy but recognized
THe next day,
however, all hell had broken loose. I arrived at the hospital to
find him tied down in a wheelchair by the nurses station. When he
saw me, he started screaming at me, accusing me of bringing him
to this place...it was all my fault and that he would never forgive
me. I was stunned. I wasn't prepared for this; no-body told me that
anesthesia and seniors don't mix well and that delirium could very
well occur after major surgery. I tried my best with dad but he
kept striking out and pushing me away. I remember walking to the
elevator and crying my eyes out. One nurse gently told me that it
was the drugs, that it wasn't my fault. But I was still shattered;
I had never seen my father like this...I have since...and I was
powerless to help ease his emotional pain and confusion. This behavior
lasted several days...he had visions of horses a lot and other things
I couldn't understand. I could only see an old man, tied in a wheelchair
in a little blue gown, probably cold and totally alone in his world.
It was painful
to relive this for the program but hopefully it will help others
whose loved one's face surgery. It pays to think very carefully
about the benefits of surgery, because it is risky in so many ways
the crew and I met at dad's, as he of course is part of this story.
When I entered his room he gave me a huge smile and held out his
arms, something he hasn't done for quite a while. I explained what
was going to happen, got him spruced up. We decided to film outside
because it was so lovely. They basically filmed me pushing dad into
the garden and talking with him, then looking at his memory book
together. Ideally they would have liked to have been able to interview
dad and hear about his side of the delirium experience...did he
remember it? The best I could do for them was describe to dad how
he broke his hip and had to go to the hospital for an operation.
I asked him if he remembered this; I told him it was fine if he
didn't (as the cameras were rolling on him!) and he said he didn't
remember. While we were talking in the garden, the cameras were
quite close to us. Every once in a while dad would look up at them
but other than that was a natural! Now he has that movie star reputation!
is entitled "State of Mind" and starts on WTN in January. Each segment
covers a different mental condition...depression, dementia, delirium,
schizophrenia...but lasts only 30 minutes so it will be interesting
to see how much of dad and I end up on the show. In any case it
was interesting and fun, something different for dad...one of my
goals in life these days...
Today was supposed to be a nice outing for both dad and me. Anything
but... When I arrived at dad's at 9:00 am in preparation for a barbeque
on Toronto Island, I wasn't too happy with how he looked. He appeared
very tired and somewhat vacant, but since it was early, I thought
it was just that...too early.
We went downstairs
to wait for Wheeltrans and arrived on the island about 11:OO. Dad
slept most of the way and in fact slept till I managed to wake him
for lunch. He didn't do well on the hamburger so I gave him a yogourt
I had brought and then gave him a banana and an Ensure (which tasted
terrible to me).
He stayed awake
for the next few hours but he was quite unresponsive; no matter
what I did or said, it didn't seem to get through. He was agitated
and seemed disoriented. He kept clawing at his traytable. It then
hit me...I bet he had had a small stroke the night before.
So I tried
to be calm with him and keep people away; he dozed on the ferry
and the van back to his place. By the time we arrived back at 3:30
PM, he looked like he was on drugs. No response whatsoever.
his companion was there so he helped me get dad out of his clothes,
cleaned up and into bed. Dad fell asleep immediately. I was worried
and weepy, wondering what I had put dad through on a day when he
should have stayed close to home. I asked the staff not to wake
him for supper and told them I would check back later. I walked
home, so sad and thinking: I know he has to go sometime, so why
do I think he will go on forever?
I called the
floor at 7:00 pm, they told me dad was awake but in bed. I immediately
went over and found him tangled up in his sheets and quilt, very
agitated. He struck out at me and wouldn't let me near him. Then
he would grab my arm and try pulling me across the bed. Nothing
I said made any impression; I was someone to be feared and pushed
away. Finally I called for help, to get him straightened up so I
could try to give him something to eat. Two nurses came in to help;
they were very good. Even though he grabbed them, they let him and
talked to him, telling him I was there. The pads under him were
wet; they removed them. As soon as we were finished, he calmed right
down. Stupid me...he was wet and uncomfortable and I didn't understand
what he was trying to tell me.
let me put his teeth in, so I fed him what I had...thickened supplement
and a can of tapioca pudding I had brought with me. He ate well;
never took his eyes off me, although I don't know if he knew me.
He didn't say a word. My eyes kept filling with tears; I thought
I would be able to handle an episode like this better, but obviously
not. To see someone in such mental distress and not be able to communicate
with them is a terrible feeling. I cleaned his face when he had
finished the pudding and stroked his hand, asking him to go to sleep
so he would feel better tomorrow. He went to sleep; but I don't
know about tomorrow. I'll call later this evening to see how he
Dad had a quiet
night; I walked over this morning after he had had his shower. he
was reasonably alert but did not know me. As I was trying to communicate
with him, I glanced down at his feet and noticed his shoes looked
peculiar. I went to adjust them and I noticed his ankles; all the
swelling that had been there for over two years had completely disappeared.
I was astounded...called the nurse manager but he really didn't
have an answer. Miajan and I thought that because he had been lying
down for so long that the swelling went down, so therefore it should
come back after a day or so. We'll see.
A humid day
so I waited till dinner time to see dad. He seemed better but I
am still not sure if he knows me.
I started to
give him his dinner and noticed a decreased ability to swallow.
He will take a spoonful, (sort of) chew it and then just not swallow,
or only partially swallow. As a result when he opens his mouth for
the next spoonful, he loses part of the previous. All during dinner
he kept reaching over his traytable for something, but I didn't
know what. All rather distracting for me and unsettling.
I took him outside to sit; bought him an icecream and some egg salad
sandwich. He tried to say something a few times but I can no longer
understand anything he says, except yes and no. Very frustrating
for me, but especially for him. So I just talk to him about anything
I can think of, but there are more silent times between us now.
It keeps getting harder to visit...
I wrote his
doctor a letter which I left for him at the nurses station explaining
what I believe happened to dad and asked him to call me. I am positive
there is nothing more medically we can do for dad but am always
asking just in case.
called me this morning and told me I was most likely right about
the stroke but concurred that there is nothing more he can do, except
provide TLC, along with everyone else. I asked about the reduced
swelling in dad's ankles; the doc thinks it's the result of taking
dad off the antiinflammatories for his arthritis. I commented that
we did this a number of months ago, but apparently it can take six
months for the effects of these powerful drugs (on seniors) to wear
off. I asked if dad should go on an outing to the exhibition tomorrow;
he said if it's a good day for dad, it should be fine. I am afraid
there will be too much noise and confusion but I've decided to let
his companion take him. Hopefully this outing will do more for dad
than the last one!
Went to see
dad before dinner; took him outside to sit with some other residents
and their companions. I am still not sure whether dad knows me...so
Mireille looked at dad and said:"here is your daughter..what is
here name?" Dad looked at her and then looked at me and then said
"please stay off the grass"...he was reading a sign on the lawn
behind me! Well, that got everybody howling with laughter, including
dad, although I don't know if he really understood how funny he
Took him up
for dinner; his swallowing is better than it was and he ate everything.
We went for a walk; he seemed to want to go back (unusual) but when
we got closer to the home, up went the hand and the finger pointing
away to tell me to go the other way! He used to do this finger thing
a lot..it really aggravated me...all he had to do was say can we
go this way...so one moment I think he has lost so much capacity,
including his ability to recognize me and the next minute he's back
to his old tricks. Who knows...I finally took him up about 7:30.
He was out of sorts, wouldn't let me take his teeth out, kept yelling
no no no no...I guess I should be thankful; the crabbier he is,
the better he probably is.
took him to the Exhibition on Friday; he apparently had a good time,
ate well, not agitated. I wish he could remember these outings because
then we'd have something to talk about.