Jan. 3/00
Walked over to give dad his Sunday supper; found him in bed awake. I asked for and received prompt help to get him up. As we moved him from the bed to his wheelchair in the hoyer lift, we checked his weight. I was horrified to see it had dropped to 58.5 kilos or 129 pounds. I knew he was thin but for a man who once weighed 165 lbs this was pretty shocking. I washed his face and told him it was time for a haircut, something I know he enjoyed. I dragged it out as long as I could - cleaned his ears - and as usual he became sleepy. Not a good thing for dinner time however. His aide brought in dinner on a tray and another shock...there was some problem in the kitchen and my dad was presented with a barely warm jar of baby food, some runny carrots and a vile looking orange pudding. I walked back to the dining room to find out what was going on. There was no soup, no mashed potatoes...no basic food at all. No-one seemed to know what was going on...I was blazing mad. I went back to dad's room and began to feed him the baby food which was barely warm. He was so sleepy that it took ages for him to swallow. I kept talking to him, massaging his cheek, anything to get him to focus on eating. He did manage to eat the baby food and some carrots. I tasted the pudding which was terrible and decided to go across the street to the variety store and see what I could find for him. I bought a can of pea soup and some cottage cheese; they heated up the soup and somehow I managed to get most of it into dad, along with some cottage cheese and a rice pudding. A long, difficult process which is only going to get worse I'm afraid. He did not seem to have a clue about who I was.

Jan. 4/00
I called the director of the nursing home who was not in, so left a message on her voice mail about the unacceptable food given to dad last night. I also called dietary and spoke to the manager who tried to tell me it was their Y2K contingency plan if there was no electricity. I said there was electricity and she replied that they still had to go ahead with the plan. I said: OK I understand for Jan.1 but why was my father underfed on Jan 2? We went around and around and I got more and more angry. It was like talking to a machine which is programed to say the same thing over and over. Apparently 'upper management' approved the plan; why weren't families informed? No answer for that. I then called Wahid at dad's and asked what he had been given for dad's dinner on New Year's Day. Same thing...baby food, carrots and pudding. I asked him why he did not call me; he apologized and said he should have.

Jan. 9/00
Sunday night dinner; when I arrived dad was asleep. He woke up, I washed his face, brushed his hair and spoke with him for a while. I asked him to stay awake for dinner but guess what? I went to get it and he was asleep. I could not wake him so I waited half an hour and finally he started to come around. Feeding him took forever; one mouthful, maybe a swallow, maybe not. Try again and again. He does not swallow, it all comes out of his mouth and spills over him. At the end I think there was more food on him and on me. I did my best.

Jan. 11/00
Quarterly family council meeting at 4:30 PM. Arrived early to take a plant to dad and kiss him. He was oblivious to both the plant and me. The meeting was good. I expressed once more my outrage at the food given to the residents over New Year's. Doesn't really make much difference to me I guess; dad will not see another disruptive event like Y2K. Talked about long term strategy for the nursing home; our health care system is changing so much it's like shooting at a moving target. Think I'm tired.

Jan. 12/00
Annual care meeting, the third at Lincoln Place, hard for me to believe. I arrived about 9:30 AM. Dad was asleep in his wheelchair in the doorway. I pushed him into his room but there was no way he was waking up. The meeting was in dad's room; it was comprised of me, his physician, the day nurse supervisor, Linda from dietary, a rec therapist and an OT. The issue really was quite straightforward; dad's physical condition is good but the strokes are slowly rendering him incapable of eating. We discussed his weight loss and diet; will try a different kind of mince, continue with 3 meal supplements a day and replace the afternoon banana with ice cream which dad loves. He no longer wears his dentures for eating so we have to do a little testing to determine what food consistency will work for him. Michael is the physical therapist on dad's floor who has worked with dad since he arrived. At the end of the meeting after most everyone had left he looked at me and promised that everyone would look after dad, make sure that he would be fed to the very end. I almost did break down. Such a nice man, so caring as are others around dad. I am fortunate.

Of course at this meeting we had to discuss heroic measures and the DNR (Do Not ruscesitate) order. Fortunately his physician and I are in agreement. When dad stops eating completely, we keep him comfortable, with oxygen if necessary. No G (stomach) tube. No admission to hospital; I don't want him to die on a gurney in a hospital corridor. Apparently a person in this situation who stops eating goes into a semi-coma state. They are comfortable and they just fade away. His physician refused to give me any time frames and I accept that; dad has amazed everyone with his ability to keep going. He slept through the meeting, opening his eyes briefly. After the meeting I sat and watched him; I hope to God he goes 'quietly into the night'. I was amazed I got through the meeting without crying. Maybe I am finally getting run down, getting used to seeing dad almost comatose so much of the time.

I look at the this screen, wondering how I can write so rationally about my father's dying process. I guess because it is time for him to leave us, it is time for him to move beyond his wheelchair and his helplessness. I do not know what is beyond this earth for us, if anything. I hope there is something where my mother is, where she is living with no terrible cancer pain. I think sometimes I am surrounded too many by old, frail, dying people and I think too much about my time when I am old and frail. It scares me because I know too much.

Jan. 16/00
I am quite sure dad has had another small stroke. When I arrived I found him in his wheelchair with his head back, eyes looking up, glazed over and his mouth wide open. I froze for one moment then went to work. I began to make him aware of my presence by kissing him, speaking quietly. I asked for help to straighten him up, then washed his face and hands and combed his hair, all the while speaking quietly and touching him gently. Finally he seemed to become aware of my presence. I told him I loved him and that I knew he loved me. He looked at me and tears filled his eyes. I knew I had reached him but at what price?

Until it was time for me to get his dinner, I spoke continually, updating him on the family, on me and Caregiver Network, anything to try and engage him. It was tough slogging. I got his dinner and at first it was OK, he swallowed quite easily. But after about 10 mouthfuls, he started to lose focus and it became more and more difficult. I tried my best; I rubbed his cheek, cajoled him...but finally there was no response; he fell asleep. I watched him for a while, then cleaned up the mess on his bib and my lap. I waited but it became apparent he was not going to wake up so Oreo and I left.

It's strange; it is not until later after I have left my father that I become aware of how upset I am. When I am with him I guess I concentrate all my energies on trying to communicate with him and keeping him alert enough to eat. After I have left is when my heart hurts and I recall how I found him...how many more times can I find him like this?

In my newsletter The Caregiver I write a column called "Keeping you posted". The newletter is being printed as I write this, but I am including this column here because it says what is so much on my mind. Forgive me, dad.

Should I ask why?

My father is in his 92nd year now. He suffers from vascular dementia, crippling arthritis in his back which has confined him to a wheelchair, aphasia (inability to speak), dysphagia (inability to swallow), incontinence, hearing and sight difficulties. He cannot reason, he cannot speak, he cannot move. He is helpless, completely dependent on others. How much worse could it be?

On New Year's eve I went to visit my father after church. He was in bed, still awake. I sat beside his bed and spoke to him about the new millennium. I said it was amazing that he was born in 1908 and here we were on the brink of 2000. I marveled at how much he had seen and lived through, how much the world had changed in his lifetime. He did not look at me as I spoke. I had no idea if my words meant anything to him. As I watched he fell asleep.

A few days later on dad's floor in the nursing home I went to comfort a resident who was crying. She asked me: why can't I put a gun to my head? I was not prepared for such a comment but did my best to comfort her. I told her that I believed there was a reason for everything in this life, including the reality of her life.

On the walk home from dad's on New Year's I asked my self once again: why is my father still alive? What purpose can be served by keeping such a disabled old man alive, a man who is a prisoner in both mind and body?

Do I really believe there is a reason for my father's sad existence? I think I do. I believe my father continues to live so I can personally experience his aging and the devastation that chronic illnesses can cause; so I will continue to develop Caregiver Network and pass on my experiences and support to help others who face struggles similar to mine.

Or maybe it's my father's utter stubbornness that keeps him going. I have no way of knowing his truth. All I know is I must have mine, so that I can keep visiting him, supporting him, watching him die too slowly without falling apart myself.

My father's suffering - and mine - have given me my life's work; for me there can be no greater gift.

Jan. 23/00
What a difference a nap makes! I called the home and asked them to make sure dad had an afternoon sleep before I arrived with the hope that he would be more alert at dinner time. Well, it sure worked, at least for tonight. Here's what he ate: a cup of thickened soup with a piece of bread softened in the soup, a dinner of minced meat, vegetable and 2 large scoops of potato with gravy, then another soup with bread, more meat, vegetable and another scoop of potato with gravy, followed by pureed fruit and 2 puddings that I bring, plus a cup of thickened juice. I was quite sure that dad knew me tonight although he made no acknowledgment; however, the way he looked at me and followed me with his eyes leads me to believe this.

It's really day by day with dad. One day it looks as though he won't make it through the week; next time I see him he eats as he did tonight. A resident I knew on floor 6 died suddenly last week. She was sitting with her companion talking when she abruptly raised her fist, turned red then blue and went into a coma. She died that night in hospital. Sarah's death made me realize that such a thing could happen to dad. I know this is a reality but somehow at the same time he has been going for so many years that I think he could just keep going.