Jan. 1/97
I went to the hospital tonight to tell Dad that he was moving and to pack up his things. He seemed very happy to be getting out of the hospital; I cut his hair and gave him a shave while packing. I hope his companion, Norman, who has been visiting him here will continue once Dad moves; Norman wants to assess the location etc. to see how he can fit it in to his schedule. I cannot find Dad's glasses anywhere; maybe the staff will. I left Dad telling him I would meet him at the home the next morning. I made sure that the doctor's orders to the home included physio so they would get Dad up walking every day.

Jan. 2/96
I arrived at the home about 10:30 am; Dad was due at 11:00. Right away I was somewhat distressed. Once I had unloaded all his stuff, the wait for the elevator was endless. The place has 260 residents, 5 times the number of the retirement home he was in and only 2 elevators which constantly seemed tied up with laundry, food and transportation of residents. I got the stuff up to the sixth floor and found how really small his space is. His roommate has a little more than half the space; there really only is a place for a chair and small table. I could not unpack any of his clothes as everything has go to the laundry to be labeled, so I did what I could. Dad arrived trussed like a lobster. An ambulance only transports via gurney so he was all wrapped up in his down coat, hat, gloves inside a large orange sheet. He looked a little shell shocked.

We got him unloaded and organized in his chair and I introduced him to his roommate, Edward Thomas, a very quiet man with Parkinson's. Since he also has speech problems, I don't see much chance for verbal communication between them. Dad said he liked the place. I fed him his lunch and took him downstairs and outside for some fresh air. He has a cold, however, so we kept it short.

A number of people came though and introduced themselves...the physio, rec therapist, nurses. Everyone seemed very nice and I left with my fingers crossed, telling him I would be by the next day.

Jan.3/96
I called this morning to see how he spent his first night; the news wasn't good. Around 8:00 pm he started to get restless and agitated, then aggressive and more violent. He was pushing himself all over the floor, trying to push open the exit door; he knocked over all the items on his roommate's table. Apparently the staff couldn't get near him; they finally slipped a sedative into him in a cookie. I asked what it was. When they told me it was Haldol, I almost died. This was one of the drugs that almost killed dad in the hospital. I immediately told them he was never to be given this again; I then called the hospital to ask why this information was not communicated to the home. The hospital nurse practitioner claimed they did not know, something I find hard to believe. After numerous discussions, during which I was basically told that one medical institution does not want to advise another on how to treat a patient where drugs are involved, it was left to me to prevent any further such mishaps. What a medical system. If I had had any idea about this, I would have ensured that some kind of this information went from the hospital to the home on his discharge papers. One more lesson learned.

I arrived to see Dad at about 5:15 pm, dreading what I would find. He was sitting beside the elevator, waiting for his dinner. He was in the second sitting as all residents on this floor eat on the floor. He was missing his teeth and looked like he was in shock. The light was super bright, the noise horrific because so many of the residents suffer from dementia; I thought: Oh my God, what have I done to him. I immediately moved him into his room and after a search found his teeth under his pillow. I tried to settle him down; he was very distressed. He said he was in a prison, that he was embarrassed. After he calmed down, I explained the plan to him. I reiterated that at the moment there was no other choice. His home is rented (and out of the question anyway); this nursing home was the first to have a bed and according to the rules we could not refuse it. I told him I would continue to try to get him a private room here and that I would keep trying to get him into my number one choice home. We went downstairs to wait for the movie at 6:30. It was a travelogue, his favourite. He dozed off several times before and during the movie, but over tea and cookies he professed to have really enjoyed it (we 'visited' Japan). The rec therapist, Robert Gibson, runs the Friday night travelogues and was wonderful with the residents, trying to make the movie as much of an outing as he could. I will leave him a note about what activities I think Dad will tolerate so Robert can try to ensure dad is asked if he wants to attend. We went back upstairs at about 8:00; I told Dad he could not behave as he did the night before; he said he wouldn't. I left him watching his roommate's TV, a very unhappy man. Happy New Year.

Jan. 4/96
The phone rang about 10:30 am; it was the home. The first words out of my mouth: what's wrong?? Yvonne, the floor supervisor, laughed but that was the last time she did so during the conversation. Dad undid the call bell last night so the staff did not hear him as he crawled out of bed; his roommate turned on the light and they found Dad on the floor. This morning he has been wheeling in and out of all the rooms, taking fruit from another resident. I think they are surprised at his behavior and wondering how to handle him. I explained that he did this at the hospital before settling in; I also asked Yvonne to call his charge nurse at the hospital to try and get more information about how to deal with him. He cannot sleep on the floor now because there is not enough room. I certainly don't have all the answers; I know my father and he probably is determined not to settle in as his way of asserting his independence. Yvonne siad they will try to find him a place in the dining room so he can get off the floor for meals, something I had asked for the first day.

I called Debbie last night for emotional help on all this. She agreed Dad would cause trouble as his way of rebelling against everything that has happened to him in the past 3 years. She also told me that if I kept telling him I would move him when I could that he would never make any attempt to co-operate. I shall call an agency on Monday to get a companion in for him immediately, to try and keep him occupied. Once again I find myself in a terrible dilemma; I am exhausted and
discouraged - again.

I have found Caregiver Network's theme song, "I will Take Care of You", a gorgeous song by Amy Sky on her latest CD, Cool Rain. Whenever I hear it, my heart breaks a little. I wish things were as seemingly simple as in the song, which says in part:

"On a September afternoon
In nineteen eighty nine
The girl waited by a hospital bed
Never leaving her mother's side
And she said "Mama why don't you close your eyes
try to get some rest
It's my turn to take care of you and I learned from the best
I will take care of you."

It hurts to have my father in such a place as this nursing home. It is beneath his dignity. I wouldn't want to be there.

Jan. 5/96
Yesterday was a bad day; I resolved that when I visited dad today I would remember why he is in a nursing home and that there is no other solution. I will remember how he is so good at pushing my anxiety buttons and will do my best not to react. I am no help to myself or him in this state.

Before I went to see him, I made up a 'care request list' for the staff covering his dentures, skin and fluid intake. I posted a copy by his bed and gave one to the nurse on duty. I also made up a list of activities that I thought he should be encouraged to attend and gave a copy to the recreation staff. When I arrived he was out in the hall again, waiting for dinner. There was one women close to his room who was literally screaming her head off. I immediately took dad into his room and closed the door. The noise distressed both of us. I gave him a shave; he was quiet and quite tired. I am worried he may have another urinary tract infection and mentioned my concerns to the nurse who noted them in his chart. The nurse told me, however, that he hadn't had a sleep all day and that he had been pushing himself up and down the hall so he may have been just worn out from that.

Tomorrow the home administrator is back from holidays; I will call her first thing to try and get dad moved to a quieter floor and to make sure his name is still on the list for a private room. I shall also ensure he is given more fluids; there were none on his tray tonight. I left a bottle of cranberry juice by his bed, with instructions that he be given some at every meal. I am also asking his visitors to give him a drink whenever they see him.

Jan.11/97
Have been sick since last seeing Dad; picked up his cold again (thought it was supposed to be the other way around!). So I stayed away from the home..they don't want you around if you are ill. Spent most of the day organizing the move of some of his furniture and bought him some more stuff, so when I went over about 4:00 pm I moved things in, hung things up...calendar which I've asked visitors to mark when they come so I can remind Dad they have visited. I brought stuff over to start his memory book - a place where one can compile pictures, documents, information etc. to help someone with dementia remember what he is really like...but also to help those who visit, to give them topics for discussion. But although Dad was amazed to see photos I had dug up (and tearful) he didn't seem all that keen to help. I think it's asking too much at this stage so I'll proceed on my own, bit by bit. I have selected categoroes...Dad's family, Mom's family, the wedding, our family, the kids, trips, weddings etc. so it could take a while. Not like I don't have anyhting else to do! He again expressed his displeasure at being where he is...too small etc. Told him I am working in it. Our family meeting for yesterday was cancelled because the doctor was sick, so won't get to voice some stuff until the 24th but meanwhile I keep calling and asking for what I want...private room, dining room meals, more fluids...they'll get tired of me but that's the point.

Jan. 15/97
Went to the home today to sign the papers and discuss moving dad as soon as possible to a private room on a quieter floor. They will assess him further to see what their options are; I'll just keep calling and asking about their progress. I saw dad and his newest companion Wilf waiting for the elevator but chose not to say anything; if dad saw me it would disrupt everything and he seemed quite happy with Wilf. There seems to be an outing every week, to a museum or historical site or a mall...Dad loves to get out so I am delighted. There is also a woodworking class at a nearby community centre which I'll encourage him to attend.

I have finished his memory book which I hope will help dad and also help those who visit...give them topics for discussion. (I called my uncle, dad's brother to get some information and learned that dad's family is related to a couple of US presidents, including Lincoln.)

I divided the book into sections..his early years, my mother, his marriage, family pictures, friends, trips, California life, his 88th birthday last May. I also picked up his hearing aid which needed repair; since I and various aides and nurses have found it in his bed, in the laundry and in a pocket, I asked the audiologist to put a chain loop on it so if he takes it out, at least it won't get lost (hopefully).

Jan. 24.97
Finally, the family conference. I arrived at the home around 8:45 am to visit with dad a little; he was visibly tired. He'd gone out on 3 outings this week and I think that's too much.

Everyone assembled in the family room...myself, dad, his doctor, floor nurse, physio, rec therapist, dietician, minister, administrator. I had prepared a list of issues I wanted to cover and passed around copies. We reviewed everything..I want more fresh fruit/vegetables, a weekly whirlpool, more attention to personal care issues; we reviewed activities I wanted him to try and medication issues with the doctor. All in all a good meeting. Dad was pretty dozey...I explained to him why we were there and what we were discussing.

We returned upstairs and I left him dozing in the lounge. I'll keep calling the administrator to push for a private room.

Jan. 31/97
I called the home to make sure dad had been taken down to the movie...a travelogue which he enjoys. Turns out he was still on the floor and I was not happy. The nurse called back to explain that dad had said he couldn't go to the movie because he thought it cost money. Heartache time. I made sure that Bob came to get him and take him down.

I also had a long conversation with the recreation therapist responsible for the outings. Nancy is lovely and fond of dad, as he is of her. She reviewed the past outings with me; dad loved the mall trip; he devoured 3 donuts with his coffee. He did not like the woodworking; apparently he did not like getting dirty...so he won't go again. He also was not thrilled with the concert outing. The music was country western, a genre not popular in my dad's day, and he got upset because they missed the cake and tea. If there isn't any food involved, dad isn't interested!

Next week they go to the movies and the following week to a winery. Should be interesting. I try and be as enthusiastic about these trips as possible to encourage him to participate but if he says no, it's no.