Aug.5/98
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.

The doctor 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.

Aug.9/98
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 it.

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.

Aug.13/98
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 me.

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 for seniors.

After lunch 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!

The program 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...

Aug.20/98
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.

Fortunately 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.

He wouldn't 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 is.

Aug.21/98

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.

Aug.23/98

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.

After dinner 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.

Aug.26/98

Dad's doctor 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!

Aug.30/98

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 had been.

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.

His companion 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.