Two sides to dementia: How I’ve seen the good and the bad

This is a continuation of Lyn’s series on dementia and her ex-husband’s wife. You can read the previous entry here.

10 years ago I picked up the phone and a voice on the other end said, “I just wanted to share something. I have fallen madly in love and I feel like a schoolboy. I hope you don’t think I am crazy”. This was my 85-year-old father who had been widowed a few years before. He had known Joyce for a number of years as a friend and one day they went for a drive and stopped and watched the sun go down over the sea. He said it was if their two spirits met and all of a sudden they knew that they were really in love.

Did I think he was crazy? Not at all. I had never been particularly close to my father and was thrilled that he felt he could share this with me. I was so happy for him as he had spent quite a few years nursing a very demanding wife and I really felt he had earned the right to find happiness with someone else.

The day of the wedding was memorable. As they walked down the aisle together they both looked radiant. Joyce looked really beautiful in her blue dress but for the first time I realised my father was very frail. He had always been strong and healthy but here he was leaning on his stick, determined to make it down the aisle.

I think the minister may have been using the wrong sermon as he pronounced that marriage was for sex and procreation and I stifled a laugh as I looked at this seemingly fragile couple. I did urge my dad not to give me any more sisters and brothers and he saw the joke.

However, it didn’t take them long to get rid of the twin beds and enjoy telling everybody how they had discovered the joys of being together in their queen sized bed. I really believed him when he said he felt that he had found the true love of his life.

They only had three wonderful years together before he succumbed to advanced Parkinson’s disease and slipped into dementia. Their love remained true through his remaining year. When she could no longer take care of him she reluctantly placed him in a nursing home where he would anxiously wait for her daily visit when she would lie on the bed with him and he would be content.

When he went it was not long after that she followed. It was a very sweet ending for them both. So different to what is happening for my charge, Pat.

It has been a release for me to share her story and it is not looking like a happy ending. Sometimes I even wonder if I did her any favours but of course I could not leave her in the terrible situation she was in. I thought buying her the unit in a facility sold to us as able to provide ‘end of life care’ was the chance to have a peaceful and happy ending. It was not to be.

Following a heart attack five weeks ago, she has slipped into an aggressive form of dementia and the facility we hoped would give her care for the rest of her life has had to admit defeat. I am now faced with getting the unit she set up so beautifully, for sale and have only now found a suitable nursing home for her.

I know she did have a few happy months in her unit but she has totally forgotten and the sweet relationship we had for a short time is now gone. She told me yesterday that I looked old and ugly and to get out of her sight. A week ago she was still saying how glad she was that I was in her life. Now she tells everyone it is my fault she is where she is. I am trying not to take it personally as I learn more and more about this dreadful illness.

She has had to go into a locked ward as she wanders and is still prone to disrobing on a regular basis. It is a lovely facility and we have tried to set it up with as many of her personal belongings as we could fit. I really hope she settles down in time as it is far better than the hospital where she sat unstimulated in the preceding weeks. This facility appears to make every effort to keep the clients stimulated. I can’t get over how swiftly this has all happened.

A friend I had not heard from for several years rang me and as we chatted I told her about Pat’s change in behaviour and she recounted her experience with her father who was extremely aggressive for five years. I had known her in that time and she had mentioned him several times but I had no idea what she was going through. This has been a huge lesson for me to have more empathy for those travelling this road.

My daughter and I will take it in turns to visit and give her as much touch as she will allow. I may just have to accept that from now on I will remain ugly and old to her – or to the person she has become. It is so very sad.

Share your thoughts on Lyn’s story below. Or read one of her previous entries:

Read part 1 here

Read part 2 here

Read part 3 here

Read part 4 here