This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.


Monday, December 8, 2008


John spoke today (when we met with the therapist) about feeling I have put up my barriers and disconnected from him. He said he feels like I love him but I don't like him. I didn't know what to say--he was upset and it seemed cruel to say there is some truth in that. Last week I gave him a book I liked very much that I thought might help open up more sharing. John said today that he found the book completely foreign to who he is.

After I came home I happened to read a story (Christian) on the internet about the importance of being true to our feelings (this link goes to part three, but has links at the beginning to parts 1 and 2). I feel like my only choices are to betray myself to keep him content or to betray him.

It has been one of my philosophies of life that there are always more than two alternatives. But I'm still not feeling well and I'm too low to think of any right now.


Anonymous said...

Hi from Australia,

It's a hard road to travel.

A little of my road...Dad being my parent I was taught to respect him, to listen so I could learn from him etc...the normal parent/child relationship. So at first when I noticed I could no longer take him at his word was so foreign to me. This is an example. Dad was passenger in the car. He always had looked and said when turning if there were on-coming cars. He said clear but it wasn't. I didn't drive out, thank goodness. I came home and had to get my head around how I felt. What disturbed me was the difference when raising children, my children, they build on your teachings this was not the case with Dad. Each decline, I help him through but there is no reward unlike with children who build on your help. I had to adjust, to no longer interacting as adult to adult. I had tried prior to this to keep up my normal reactions. I thought it showed him respect. In a conversation if I disagreed I would say so. This had to fall by the wayside as Dad became more obsessed with ideas that were simply not my gentle, passive Dad. ie He began to gradualy increase his rants about all criminals and that they should all be hung. I don't like these rants and attitudes but they're not my Dad and I now have to be quite stern and say 'enough' or else he gets more and more angry and agitated; at times to a degree he frightens me.
Last week he kept waking through the night, getting out of bed and waking me, screaming he was going to kill himself. Very difficult to see him like that and all I could do was reassure him and put him back to bed. Next morning he had bounced back.
He was an electrician and wants to rewire lights in the house, pull the back off the tv. We have gone through 3 shavers. This was so sad to see something that he excelled at now had become a dangerous problem. He sometimes says things which are nasty and hurtful. Before the illness he had never said in my whole life a nasty word to me. When this first happened I took it to heart and phoned my cousin...big reality check...she tells me of a couple, the gentleman had alzheimers and he used to lock his wife out saying she wasn't his wife.
If I have a shower he gets angry and says he is going to bed. I think huh? He thinks I'm going out. He says things such as 'when you go out all the time'...I don't go out. I have even started to buy groceies on-line and they're delivered. Yes, at times I don't like him and I have to stop myself from being horrible. But someone has to fight to make the most of his good days because he can no longer do that for himself.
Earlier on Dad was aware he was having problems with his memory but it really is a blessing as time passes that that awareness fades. It would be too much for him to cope with and too sad if he was aware of his decline.
Yesterday we were together with my daughter and a real estate agent and Dad begun to discuss his bowel movements...how he thought a change of altitude had helped; huh!But later we were able to have a meal out and he said it was the best day he had had in ages.
Learning the new form of interaction was very difficult because of the fluctuations...when to react like an adult or more like a parent/carer. As time passed I have become more aware of ...this is a bad moment and it's the disease. We still have a long way to go and the road will not be easy. Could I place Dad in an aged facility and leave his care to strangers? No, not whilst he still had good days and I can still manage. There will come a time when this will change. I don't know what the deciding factor will be but I will know when its time.
I don't know if any of this will help, I can only hope so.
I chat online with an elderly chap who cared for his wife (alzheimers) for 11 years. He has helped me so much with his insight...his wife one evening kept going to toilet continously, in bed out of bed, flushing, back to bed. He let her be...she wasn't harming herself (bar using a lot of water in drought) but she was happy. In a aged facility the staff could not and would not allow this to happen. So it's a day at a time, good day/bad day and yes it's a hard road.

Pauline said...

The respect for the Father and loving but not liking the LBD patient...the feelings of guilt for not doing enough, reacting instead of understanding, even thoughts of life after the ordeal were all the hardest for me.

Unfortuntely, of all the things I recall of the years of watching Daddy slip away, those feelings of mine are the clearest memories.

Pam, you must stop and enjoy even a few seconds here and there of John when he is himself; or as close as he will get. I always thought there might be a better day...but those days if they happen are only minutes or seconds.

The guilt of having been inadequate in caring for my dad is not going away. The further I get from it, the more I think I shortened his scattered, but fully aware life by my mistakes. As Anonymous from Australia says, it is difficult to reverse rolls, difficult to become the one in charge and responsible for this other person that was always the one in control. I'm sure you and John were not in the sort of command and control situation we were and are with our parents, but in our society, even a balanced marriage has certain expectations.

Learning to take over family responsibilities the formerly reponsible person carried is nothing short of difficult. Not because the task is hard, but because of the mental obstructions we place along the road. For me, it seemed I was "pushing" Daddy out. Taking over before I should. Thus the guilt. Could I have done more? Yes. Could I have been more understanding and responsive? Yes. Could I have driven myself crazy doing it? Yes.

So I tell myself I did my best. My friends tell me I did more than others would have done. Still it is not good enough. If I had been perfect in every way, it still would not have been enough; and the beauty of the internet...we can learn from each other, and hopefully reduce mistakes and increase the understanding.

My best...