August 4/99
Today I attended a press conference announcing CARP's submissions to the government about the state of homecare in Canada (I was one of the facilitators at the conference). As a result of the press conference, I was asked if a photographer from the Toronto Star could take a picture of dad and I to accompany a story for which I was interviewed. Since it was late in the day, I arranged to meet them at the nursing home while I gave dad his dinner.

When I arrived, dad was quite alert. I told him what was going to happen and asked if he agreed to be photographed with me. He nodded yes, and I got quite excited; maybe he would remain so for the shoot. By the time the photographer arrived, however, he was again lost to me and he did not seem aware of anything except the food in his mouth. Since his upper denture was not yet ready (and was therefore without teeth), the photographer suggested that he take a picture from the side while I was giving dad his dessert. I appreciated his sensitivity. Picture taking was a bit hit and miss; between feeding dad and wiping his runny nose and cleaning his face between mouthfuls and trying to smile for the photographer, I had my hands full.

It was all over in a few minutes. I sat with dad after his dinner and left as he nodded off. I clipped the picture the next day; not very flattering of dad...or me! But anything to help the cause, to help make governments aware that there is not adequate homecare for anyone, particularly seniors.

August 8/99
I visited dad at lunch time to see how his back and skin were; all was well. After we put him in bed to rest for an hour or so, I sat by his bed and held his hand as he dozed off. At one point I tried to move my hand and he just held it tighter; I wondered if he knew it was me and didn't want me to leave, but in my heart of hearts I don't think so. I get very sad watching him like this, so frail and uncomprehending; it just seems so senseless. But if it weren't for my father's journey through the last 5 years, however painful for both of us, I would not have started Caregiver Network. And for this I am forever grateful.

August 10/99
Well, I did it again - caught another cold from dad. I should know by now that if I think he has a cold (apart from his ex-smoker's cough) that he probably does have a cold and that I should take precautions. Instead of trying to catch the sneezes as they explode from his nose, I should just wait and mop up later; also should remember to continually wash my hands. I know this sounds ridiculous but when the caregiver gets sick, she can't visit or help the care-receiver. So I now feel lousy and haven't been to see dad.

August 18/99
Have seen dad a few times in the past week; today I had a family council meeting at the nursing home so I went early to see him. After the meeting I went back up; it was about 6:00 PM and he had finished dinner. I found him in front of the television which was blaring away on some senseless station so I found some music and tried to communicate with him. He was completely apathetic; nothing I said made any impact. He had a look on his face that was terrible - one of anger yet absolute resignation. I could not get him to look at me. A few times he actually took my hand for a brief time. I felt so terrible; I have no idea what he feels, understands or wants to say. I massaged his legs, his back, neck and shoulders, the only thing I can do for him. I spoke softly, trying to explain how much I wish I could help, that if there was anything that could be done medically I would do it in an instant.

I learned today that the mother of one of the volunteers who helped get Caregiver Network going 3 years ago had died a difficult death. There were three of us then who were caregivers for parents; I am the only one left. It makes me realize how tenuous my father's hold on life is. Yet he is so incapacitated; how long can he continue? When I heard about Sandy's mum, I thought about how it will be when my father dies. It will be for the best; I keep telling myself this but I know I probably won't handle it too well. It's a weird feeling; I know death will happen, yet at the same time I feel that my father will always be in the nursing home, there for me to see.

I have to say something about family councils at long term care facilities. I have been on the council for almost a year. It is a small commitment - quarterly meetings for 1-2 hours. It gives family members a chance to learn more about how the facility is run and to get to know some key people better - in this case, the social worker and director of nursing. We discuss issues of concern to families and residents and try to resolve problems. Today we talked about lost articles and the steps the home is putting in place to reduce loss through carelessness (my dad's denture for example) or through wandering residents who pick things up and take them who knows where. We also talked about the creation of specialty floors for the cognitively impaired and those individuals requiring special care because they need oxygen, intravenous treatment or feeding tubes. We got into a long discussion about the changes in long term care, what the government is or isn't doing and how funding is allocated to homes. Very interesting.

If the staff can give their time, I can give mine. A good turnout for a meeting is 7-8 family members and this is a facility with over 200 residents. Pretty pathetic.

On my way out to the care, I met Jacqueline, a new member of the council. Her mother-in-law has been in the home for about a month. She had a lot of questions...I felt like I was in a time warp because she was me all over again when dad was admitted. I answered her as best I could (her mother-in-law is on 4, the specialty floor for wandering and difficult behaviors). There has to be much more family education around admittance to long term care. It is so traumatic for everyone and there never seems to be enough time to help families coping with the guilt.

August 22/99
I stayed in town this weekend to catch up and decided to take dad to church this morning. I called the home last night to make sure he would be dressed properly and ready.

When I arrived he was sound asleep in his wheelchair but dressed as I had requested. I could not rouse him but decided to go ahead anyway, hoping he would soon wake up.

When we arrived at the chirch, the organist was playing; the music was thundering through the church. Dad didn't stir. Not even the soprano singing Mendelssohn did it. Finally after the service was over, dad came to during another thundering organ recital. We stayed till it was over then went back for lunch.

Dad nodded yes when I asked if he was ready for lunch. Shortly after I started giving dad his thickened soup, he burst into tears and kept this up throughout lunch. He tried so hard to talk, but could only get a few grunts out. I think it was church; every time I have taken him he has cried...I believe that church triggers memories but of what I don't know. So I did my best to comfort him but lunch turned out to be a pretty messy affair. But I had to ask myself: why now, when he has been so unreachable? What was he remembering?

I took him downstairs after lunch to sit outside but he didn't last long. I noticed he was fighting sleep so I took him back up and he was asleep the moment his head hit the pillow. Poor man; I feel so helpless.

August 25/99
Today was BBQ day for floor 5, dad's floor in the home. I arranged to be there and take dad. Yes, he is beyond understanding he is at a BBQ, but as long as it is feasible for him to do these things I shall make sure it happens.

Before I went up to see dad, I stopped in to see the head nurse, who had time to meet with me. Ever since I had heard about my friend Sandy's mother's death and all the problems they had about where she could die, I wanted to ensure that this did not happen with my father. Basically I told Rejeanne that I wanted dad to die in his room, with us around him, no hospital but with absolute pain control and ease of breathing, whatever he needs. Fortunately this home is one of the few that offers palliative care so they can provide the oxygen, the pain control, the nutrition that may be required. That eased my mind.

I then went up to see dad and found his doctor still on the floor. I spoke to him about my wishes for dad's palliative care; he assured me that the orders would be written up, so that in case I was out of town, things would proceed properly. I then discussed my dad's present condition...how unresponsive he has been apart from last Sunday when he cried after church. The doctor said that dad has definitely regressed to a lower level of function but seems to be stable at this level. He said he did not know how long this could go on for, a few weeks, a few months or only a few days. His final sentence shook me: he said; 'Karen, basically your dad is palliative now.' His words shocked me emotionally but intellectually I understood what he was saying. I went in to see dad and the tears just started. He couldn't speak to me but I kissed him and told him how much I love him. Sometimes I think that if I can get some of the crying done now, that it won't be so bad at the end. I don't really think so, but I can hope.

We went to the BBQ and dad ate quite well but was completely unaware of what was going on around him. I cry as I write this...I hope I am by his side when he goes and he can hear my voice and know that he is loved as he leaves us. Every person deserves this.