Oct. 4/96
I am sitting here listening to the opera with my keyboard cat. I hadn't seen dad for just over a week as I was away at a conference, then fell ill upon my return. So I went over today, intending a short visit because I am still feeling lousy. When my father saw me he just looked at me and with tears running down his face said "I just can't do anything" and put his arms out to me. My heart broke, the tears started and I hadn't been there two minutes. He was so filled with despair..he has enough cognitive ability to understand what he has lost and what he continues to lose...his mind. I sat there, so helpless. I feel the only thing to do...the right thing...is to acknowledge his loss and sorrow, not to try and negate it. I told him I did understand to a degree what he was feeling...I said "Dad, it's a bitch". He said "Yes, it's a bitch". I was at a loss about what to do with him; I knew if I sat there I would really start bawling so I decided to take him for a walk, even though I was exhausted from being ill. It seems the only way to distract him is to take him out and wheel the streets. Off we went, looking at houses and trees...he would start weeping quietly from time to time. He pointed at a tree and asked me what kind it was. I told him it was a maple tree. He asked me how I knew; I picked up a leaf and described the points on it. A little while later he asked: "How do you know me?" Not being prepared for such a question and again through a few tears, I answered: " I know you by your face and by your voice". I then asked him:"How do you know me?" He replied: "I know you by your appearance". We returned and I promised to take him out to dinner the next evening....and left him eating his dinner with his bib around his neck. Not my real father.

Oct. 6/96
I arrived at about 5:00 pm to take dad out to dinner...my plan was to wheel him to a restaurant nearby where we used to go from time to time. We arrived and settled in; I asked him what he wanted. He looked to me for direction, so I suggested he have the liver and onions since that had always been one of his favourites and I was quite sure he never got liver at the retirement home. Now I think I know why!

I ordered him a glass of red wine (which he has always enjoyed), he took a sip and almost choked to death! The wine was too strong and he had taken too big a sip. (Even though I knew dad had eating problems, I didn't really understand why; I learned a few days later that people with dementia can lose the ability to judge what is in their mouth and take another forkful without chewing the previous one, and also take in too much liquid in one sip). So I watered down the wine considerably and tried to monitor the size of his sips. He then started on the liver which was certainly tender enough for him to but he didn't seem thrilled. I asked him if he was enjoying his dinner but couldn't get much of a response. So even though he ate most of it (and positively hoovered the wonderful lemon pie afterwards), I concluded that indeed his tastes have changed and that he can no longer handle more "exotic" fare.

I also learned that taking him out for dinner may be too much for him, even though the staff told me that he was very excited about the event. He didn't recognize the restaurant; all the way back to the home he was agitated and disoriented...he absolutely wouldn't believe that he was in Toronto with me...he was going on about airplanes and promises and one of my other sisters...I put him to bed as soon as we got back and even though he fought sleep, it quickly overtook him. I walked back home, not knowing whether or not I had done either of us a favour with this outing.

Oct. 11/96
Since the weather continues to be sunny, I am taking dad out as much as possible. Today I wheeled him to Yonge Street where we decided to have coffee before doing some shopping for him. He always loved the local donut/muffin shop so I ordered him a coffee and muffin. Whoever thinks that the world is senior friendly must be nuts...I have thought this so many times and now I'm finally going to complain about the situation! Where are the entrepreneurs who will provide stores with no steps...big washrooms on the street level...insulated coffee cups so seniors don't burn their hands...muffins that aren't too crusty on the outside so they can be easil;y chewed?...and this is only one outing! As are other caregivers, I am very conscious of the environment when I take my dad out..how bad the sidewalks are, how dangerous the streets. But he enjoyed himself and we got back in one piece.

Oct. 27/96
How quickly things change. I went away to Quebec City to the annual Canadian Association of Gerontology conference where we introduced CNI's new brochure and services (we were hits; more about this on the site in the near future); when I checked my voicemail on Saturday (Oct. 19) I found my father had been sent to the hospital (by himself) with a suspected stroke. I rallied what local support I could and learned he was stable but obviously I was in the wrong place at the wrong time. When I saw him on Monday he was not in good shape; without the details (maybe later) today we don't know how long he will last. We thought we would lose him several times. He has failed quickly and they don't know why since 2 CT scans have failed to confirm a stroke. On Friday they wanted him to have another scan using contrast dye to see if there is a tumor; after discussion with the doctor neither my sister Debbie nor I could see any reason to subject him to this because their management of him would not change anyway. His days and nights are completely reversed; yesterday he slept virtually all day...we could hardly rouse him for a few spoonfuls of pureed fruit. At night he wakes and tries to get out of bed and the nurses are forced to put him in a reclining chair and place him by the nursing station so they can keep an eye on him. They had to restrain him when he was first admitted; one night he was particularly violent, kicking out, even pushing my sisiter away, not recognizing her. We are working out a system so there is one of us with him as much as possible; if he becomes conscious enough he will know we love him and are there for him. I look at him and try to imagine what goes on in his mind when he stares at the ceiling..how much does he understand...I spoke to a pastor, trying to get some answers; she told me not to attribute too much depth to his level of consciousness at this point. He is not in pain and at times does try to ask or answer a question but he is slipping away. I know I must take things day by day; another sister arrives tomorrow...my brother has not let us know what he plans to do. One thing I do know; I don't want him to survive this only to have to be relocated to a chronic care hospital where he would lie in bed 24 hours a day, unable to feed himself, but cognizant enough to understand his predicament. I couldn't bear it for him or for me. I pray he slips away from us peacefully and soon, but knowing my dad and how he has fought for control and independence, I fear my wish will not be granted. God bless him and look after him. I love you so much, dad.

Oct. 31/96
How quickly things change...again. Not long after I completed the above entry, my sister called me from the hospital and told me to get up there right away...dad was much brighter and she felt I should see him that way. I flew up and arrived just as he was dozing off again. But she was right..he knew who we were...there were kisses and hugs all around and frankly we were amazed...he was supposed to be dying. Each day after that there was an improvement; what we learned was that it was the 2 types of sedatives they had given him early in the previous week that had almost done him in. There was no direct admission of this but it was obvious.

So here were all the kids (including a reluctant brother) assembled from far and wide for a dad who was again getting cantancerous and back to normal! But I was glad everyone was here, because some decisions had to be made and I was tired of making them alone. Although dad was better, he had lost some more abilities..he could not feed himself and had to be watched to ensure he didn't choke. His walking was almost non-existant and when left alone immediately tried to get out of bed or out of the chair...on his way to falling and hurting himself. He also was quite agitated at night.

The big question now...where should dad live? After discussion among ourselves, we admitted he could not return to the retirement home. I think he was borderline there anyway since he arrived at the hospital with a cut on his head and cuts and bruises on his legs. There were also issues around how this whole crisis episode was handled by the home that we were not happy with..issues that I shall address in "Housing". What were the options...keeping him in his home or finding a long term care facility. Thanks to the information and support I received from my caregiver network (shameless plug), I assembled some details. We agreed that neither my father's home nor his personality would permit effective, long term care in his home; the amount of care he now needed and the last housekeeper episode (still fresh in my mind) ended this consideration. So Debbie (my anchor in the storm) and I started to look for long term care facilities in my area. All of these facilities are run by Metro Toronto and every single one we called was full. Obviously dad would have to go on a waiting list, which varied from a month to 2 years, depending on the home. Discouraging to say the least. I thought I knew enough about the system but in reality if I had been smart I would have submitted my father's name to a select group of facilities 2 years ago...I would be in a better position today. Once again...PLAN AHEAD!! I was directed to a few places to visit which were completely unsuitable. However we did locate two that we felt would give dad the care he needed and weren't "human factories". But no real solution yet and a family meeting was set for Friday, November 1 with the doctors to plan dad's future care.

A note on our hospital experience; dad is in one of the best hospitals in Canada but I was pretty horified at times. During the first few days, we wondered if there was anyone...doctor or nurse...with any compassion left in the world. It was terrible...we had to beg for help changing or moving him. He had to be fed and probably would have starved if he hadn't been fed by one of his children. We certainly were willing to do anything we could to help the staff...but God bless anyone who has no family if they are admitted to hospital. We finally have had some nurses who are kind and helpful and seem to care about dad's comfort, but I wonder why some of them are in the profession in the first place.

One also gets very resourceful when dealing with "the system". We took in food so dad always had extra...often the tray would come with non-pureed food he could not eat. I asked for juice for him once; all they could come up with was a tiny cup of prune juice. He needed an extra pillow...not one extra on the whole floor. Sometimes I couldn't locate a towel or washcloth. So I became adept at grabbing and hiding whatever I could fine; even if we didn't need it right then, I knew we would at some point. We learned where the supplies were...sponges, lemon swabs etc. and just helped ourselves. If you asked for anything, Lord only knows when you might get it. The whole thing has been an eye opener; I am afraid for the future and sincerely hope I don't need acute care any time soon.