Dec. 3/99
Off again tomorrow on another trip - this time to New York city to deliver the keynote at an MS caregivers' day. So I went to see dad before leaving; when I talk to him about what I am doing professionally, I try to relate it somehow to his life. He was the head of Bache and Co. here in Canada (now Prudential Bache) and he used to go to New York all the time. So I told him I was going to New York on business just like he used to do. And for 2 seconds his face lit up, as if understanding that I was following in his footsteps. Then I lost him.

I promised I would come by on Sunday nite after I flew in and that's exactly what I did...dumped my baggage and drove over. In the hall on the way to his room sat three ladies in wheelchairs, two of whom I knew and greeted. I remembered the third; she was quite new to Lincoln Place and I had seen her in tears a number of times. Tonight as I walked by, she was watching me so I said hello and touched her face. She asked if she knew me; I said no but that I had to say hello because she had such a pretty face...very true. Her face lit up and she clutched my hand; her name was Peggy. I gave her a kiss on the cheek. My eyes were overflowing.

I passed the nursing station and asked Ashya (wonderful night floor supervisor) if dad had a fever, she said no. I went into his room; he was in bed, sleepy. I spoke quietly to him, told him I was back from New York and showed him a postcard of Wall Street. But he was beyond comprehension and I waited till he drifted off. As I passed the three ladies in the hall, I kissed each one and wished them a good night's sleep. I could hear them talking about me as I left the floor...they touched me more than I could ever reach them.

Dec. 7/99
I walked Oreo over tonight to see dad; he was in bed and almost asleep. I sat with him and watched his face and wondered how much longer. For both of us.

On the way home I reflected on my life right now...how I must always do at least 2 things at once to fit everything in. Walk the dog over to dad's so I can visit with dad and exercise the dog; answer phone calls while I check email...I am sure many of you know the drill. It's nuts at times. And I have not made it any easier today! When I picked Oreo up yesterday at the boarder's, there was a cat in the lounge area waiting to be adopted. Of course I sat with her and she purred and purred. And I thought about how my cat Char is so lonely when I am away and maybe this cat would be company for Char. I brought her home (her name is Jennie) and here I sit, with one cat here and one cat there, trying to engineer a meeting of the minds, all the while dealing with a pesky dog who is annoyed that my attention is going now to two cats, not one! God's teeth as my mother used to say...

Dec. 9/99
The dog's not eating and the cats are hissing...welcome to another day at the animal house! Today was the annual homebound church services for seniors at Timothy Eaton Church. Dad missed the Thanksgiving service due to the flu so I was bound and determined that he would not miss this one, cold or not.

I met dad and Wahid(dad's companion) at the church; I sat in the second row of pews and parked dad on the aisle. At the beginning of the service dad appeared almost comatose but after the first hymn he started to come to life. As every year, they always select the carols that the seniors know and love...me too. I held the carol book for dad as I always do and when I saw him look at the words and at me I lost it...as usual. Then the Minister gave his short sermon. Instead of standing in the pulpit, he stood on the steps close to the congregation so the seniors could see and hear him easily. He is an excellent orator and dad's eyes were glued on him. Then he started to cry and I knew that dad was aware that he was in church. I quietly tried to comfort him but just let him weep on and off. Once again I didn't know what was going through his head...sorrow over his situation, perhaps confusion.

After the service as usual we went down the hall to tea. I sat beside a lovely man who I see at every service. He is well into his 80's and always reminds me that his son too never married....I have to smile. We had to leave at 3:30 to wait for Wheeltrans. Wahid went outside to watch for the bus while I remained in the church with dad. The organist was practicing and I thought dad might enjoy the music. Wrong. He was angry at me, I think because he felt I spent too time at tea talking to someone else. He has always been like this...has never wanted me to pay attention to anyone but him. So he was grabbing my neck and arm and pushing, pulling. I just kept walking him up and down the aisle until the bus came.

Dec. 13/99
I wrote a Christmas piece for Web of Care (www.webofcare.com) (see below). While writing it I decided to try buying dad a Christmas tree this year and decorating it with ornaments from our childhood. I went in search of a tree but could not find anything small enough so I settled for a lovely, large Norwegian pine bough wreath. I took it over to dad's, hung it on the wall and wound small white lights around it and decorated it with the ornaments. He did watch but was more interested in eating. He was in a pushing, grabbing mood so I did not stay too long. Some days it just doesn't seem worth the emotional effort to spend time with dad.

Christmas Without My father

My father is in his 92nd year. He lives in a long term care facility near me because of his care needs. My father cannot walk or talk. He comprehends very little. For him holidays are like any other day no matter what I do.

The last Christmas I can remember my father comprehending was 5 years ago. My sister had come in from her home to spend a few days with dad in his home and to give me a break. The experience was so miserable for her that she refused to ever spend another Christmas with him. His increasingly severe dementia and the resulting verbal abuse drove her to tears. Dementia was breaking down his life and nobody could escape his torment.

Each passing year has seen my father become less and less able to rage against his fate; he has lost his memory completely. Each year I try to help him remember what Christmas was like when he was whole. I take him to church and Christmas dinner. I give him presents. Maintaining these rituals somehow helps me accept a father who no longer knows me.

I hope he will smile once during these days of celebration. Then I know that somehow I have broken through the fog that envelops him.

This year I plan to buy him a small tree and decorate it with lights and ornaments from our childhood. Will he understand? Probably not. But Išll keep on trying as long as he lives. It helps keep my memories alive. It helps bring me joy and peace.

Dec. 16/99
I checked in with dad's caregiver about noon to see how dad was doing; Wahid told me that dad was crying and had been doing so for quite a while. I reorganized my afternoon and walked over immediately. When I arrived, dad was in bed but had stopped crying. I sat on the side of his bed and tried once again to find out what was making him so sad. I laid my head on his chest; he put his arm around my shoulder and we just sat for a while. I thinks it boils down to confusion and fear when I am not around. I told him again and again how much I loved him and how much Wahid loved him. We got him up as he was not the least bit sleepy and took him out foer coffee. However the wind came up and the sun went in, so by the time we got back he said he was cold.

We sat in the lobby by the window but he refused to take his hat or coat off and generally became crabby at me before he dozed off. Sometimes I just can't win...

A beautiful plant arrived today for dad from my brother and his wife in Calgary. Another Christmas addition to his room.

Dec. 21/99
Dad's companion called me today to tell me that dad did not any lunch. He would put the food in dad's mouth and there it would sit. Dad was not chewing at all. I knew this was coming...the gradual inability to chew and swallow. I went right over to talk to the staff about it. Dad was in bed, although not sleepy. I tried giving him some pudding which he ate reasonably well.

Dec. 22/99
Today was physician visit day. I called and spoke with the doctor. He said that as long as we can keep dad reasonably hydrated, we would not have to consider other measures. I reiterated that we did not want a feeding tube; he replied that hopefully it would not come to that. In other words, I think he was saying he did not expect dad to live too long.

Today was dad's Christmas lunch at my place. He and Wahid arrived about 12:30; I hoped that he would eat. At first it was no go; the food just sat in his mouth, inspite of how much we massaged his cheek and put the empty spoon in his mouth to trigger the chewing and swallowing reaction. We then decided to take his teeth out and try again. Much better luck - I think his upper denture which completely covers the roof of his mouth does not allow him to feel the food in his mouth. So I guess dad will be toothless from now on. I had not had time to shop for special food prior to the lunch, so I gave him a real mixed bag...cottage cheese, tuna, yogourt, thickened soup and ice cream for dessert. He did pretty well although meals are getting extremely messy! I am going to ask the staff at Lincoln Place to make sure he gets minced food instead of pureed. I think he needs the texture of minced in order to feel the food.

As we were getting him ready to leave on Wheeltrans, dad started to cry. Why I am not sure; was he unhappy about leaving my place? Was he just confused or does he have a sense of what is coming? I wish to God I knew. I bent down to his ear and told him that no matter what happened, we would go through it together. He would not be alone; I would always be there. So would Wahid. I told him he was surrounded by love. So sad.

I go to my sister's for Christmas; will keep in close contact with dad.

Dec. 30/99
Believe it or not, I had a good time at the nursing home today. I arrived about 10:00 am to find dad half asleep. I could not seem to rouse him and when the entertainer who goes from floor to floor playing his guitar arrived, I pushed dad into the dining area in case some music might get through. I visited with some of the other ladies there as did Oreo. Then went up to 6 to say hello to some people only to find a tea party in full swing in the dining area. Cathy the therapist invited Oreo and I to join in, so we did. Sat and chatted with everyone while Oreo was fed treats by too many residents! Cathy is a terrific person; she works so hard to imporve the quality of life of the residents and seems to get too little credit from management. Went back downstairs again to see how dad was doing; he was more alert so I washed his face, combed his hair and thickened some juice for him. Wahid arrived and I left to do some errands. On the way out I saw Wahid's wife with their baby, a lovely boy who I had not seen before.

I think I enjoyed today so much because I did not spend all my time with dad but rather interacted with others in a positive way for both me and them. I get virtually no feedback from dad anymore and it gets so discouraging - I don't feel like I give him anything so I never leave him with a good feeling.

New Year's Eve
I decided to go to church today, don't know why. The service was at 5:00 pm; afterwards I walked back to my place to pick Oreo up and then went to see dad. He was just being put to bed; I spent a few moments with the lady down the hall who was crying when I came in. I went over to her and asked if I could help. She said: "why can't I put a gun to my head?" I did my best to listen and tried to comfort her. I told her that I questioned why my father was still alive in such a hopeless state but that I had concluded there is a reason for everything, including her living now. She said she wanted to be useful but did not want to take up my time. I offered to wheel her to the lounge or into my father's room so she could have company. We tried these things but she was not comfortable so I put her back in the doorway of her room and went back to see dad. He was awake but registered nothing. I sat and explained that it was New Year's Eve, a new millennium was almost here. I spoke about his birth in 1908 and here we were on the edge of 2000, something remarkable for him. I got no response of any kind and he drifted off to sleep. I kissed him and wished him a Happy New Year.

As I walked home I thought about why dad was still alive; if I truly believe there is a reason for everything then his living must be so he can continue to teach me more about caregiving and chronic illness so I can pass this experience and knowledge on to other caregivers who need support.

My dog Oreo continues to amaze me. I have never met any creature, 2 - legged or 4 - who lives with so much joy and exuberance. She lives in the moment and all she wants is to love those who love her. Two basic things but I think we forget how important they are. She brings me comfort and makes me laugh, especially in times like these.