Tuesday, April 24, 2007

Woman to Woman

Morning Glory is hosting Woman to Woman again today, and this time the topic is about coping with enduring health problems in our families.

Those who know me, will know that the past year has been dominated by the collapse, illness and sudden death of Geoff. A man who never went near the doctor, except for his marine medicals every year. I could write a lot about that, but I am not going to this time.

Instead, I am going to tell you about my father, and his battle with Diffuse Lewey Body Disease. This is a very rapid form of Alzheimers, and I had never heard of it before Dad was diagnosed. He and Mum used to visit us annually from South Africa, and the week before they were due to come in November 1997, he was diagnosed. He was absolutely determined to come and "see his girls" and so the consultant told him he could go, but that it would be the last trip he would be able to make. Personally, I think he was determined to get Mum to me, so he could be certain that she was looked after. He never did get to go to see my sister in Switzerland, but she came over regularly to see him. We all supported each other.

The saddest thing about the disease, is that he had moments of complete normality and then in a second could be hallucinating. He was convinced that Mum was an imposter, and not the girl he had married. I think at one stage, he was sure that he had been married 4 times. (Memories of different stages of their life together). They had just been here a few weeks when the doctors here told us that he would never be able to fly again, as he was too much of a risk. Mum had spent the entire 12 hour flight wide awake and on the aisle seat in case Dad decided to go for a walk. At 35000ft. She was a wreck when they arrived, and Dad informed us that the plane had crashed into the terminal in the snow and everything was on fire. No no and no. My son looked at me and said...what did you say this disease was?

I deal with all medical dramas by trying to learn as much as I can about the disease, and so I had contacted the Alzheimers society and had spoken to people who knew, and read the leaflets and just about anything published. Before they arrived. I needed to be prepared. Our GP told me I knew more than he did, and would I please do a summary for him. We learned together.

In his moments of lucidity, Dad asked me what the prognosis was, and whether he had hurt anyone. I was reluctant to tell him, but in the end, I did tell him, and gave him the leaflet from the Alzheimers society. He kept it in his pocket for the rest of his life. He had made notes in the margins. I told him he had never hurt anyone, and he asked if he could. I said yes he possibly could, but that I would make sure that never happened. He told me to promise to do whatever I had to do to make sure.

One of the most important decisions we made was to tell everyone. Friends, of course, and especially neighbours. They all helped so much. I used to put notes in his pockets with my name and phone numbers on, and medical instructions, so that he could still go for walks, which he loved. I would track him by phoning friends and asking if he was going left or right as he passed them, and then go and pick him up after a while. I told all the local shops who he was and gave them my number in case he needed me. He ran away at times, and that was difficult. The hallucinations are a huge part of LBD, and I never knew what he was really seeing. He tried to pour water over the tv one night, because he saw the red light and thought it was on fire. Sometimes he did not sleep at all, and so neither could we.
I was "the authority" in his life. Mum was his wife. I could not just be a daughter. I had to be someone he could trust to be in charge. He was used to being an "authority", so when he demanded to see someone important, that was who I became. I learned very fast that there was no point in trying to correct him, or saying that he was imagining things. People with dementia live in a unique world. If he saw wild animals in the road, I didn't say no, Dad, that is just your imagination. Instead I thanked him for telling me, and suggested phoning the zoo. That worked. If I said I would go out and show him no-one was there, he would have flipped out, worrying that I would be attacked. So I had to go into his world instead. Not always easy. Change is the biggest difficulty for dementia patients. Christmas trees were really not a good idea. We found out.

At the same time as we were learning to cope with this horrible illness, I was flying back and forth to South Africa to sell their home, and wind up their affairs, and also making plans to add on to our home to accommodate us all. It was a complicated time. Luckily, my sister could be in Cape Town at the same time as me when the house was sold, and we packed it up together. We decided to put Dad into respite care for 2 weeks, in the April of 1998, and he had only been there a few days when we were told he would never be able to come home, as there was too much risk of him becoming violent.

My Dad was a gentle strong man, who was a chartered civil engineer, and who had a masters degree in town planning. He was a world class athlete in his day and very well respected, and to think that he could harm any of us was dreadful. But I remembered what I had promised him, and so he stayed in the care home until we found him a lovely nursing home a year later. I still remember what he said when we took him in for the first time. He said quietly.... this is a strange place for an engineer to end up. It nearly broke our hearts.

Mum and I visited him daily, and he died a couple of months after their golden wedding anniversary in 2000. Both Mum and I were with him. By then, he didn't know who we were, and yet he was content in his own little world. By the time he died, he was so thin and frail, and nothing like the big strong man I had known to be my father. I am amazed at his strength and determination to make sure Mum was safe and I am sure he made a conscious decision to come to us.

He was an amazing man. My Dad. Today would have been his 84th birthday.


Morning Glory said...

Oh Linds, this is totally right to post today. What an inspiring story of family love and caring. And to think today would have been his birthday...

I know someone who's mother has Alzheimers and he constantly corrects her. I wish he would do as you did and enter into her make-believe world, because I know she doesn't get what he's saying.

Thank you soooo much for sharing this. I hope it helps someone else's family.

Florinn said...

How poignant that this topic fell on your father's birthday.

Jen said...

Thanks for sharing this...my grandpa has dementia, and its painful to watch what both he and my grandma are going through.

Retha said...

I am touched by your post.
The love, care and support you were able to give! And still do, I am certain.

Lei said...

Beautiful, Linds. And how happy I am that you were able to tell this story via our forum today. I'll be thinking of you today; the anniversary of my mother's death in on Saturday and I know it can be bittersweet.

meggie said...

A wonderful loving post. My Mother in law had Alzhiemers, & it was so sad to see.

Susie said...

Hi Linds,
That was such a touching post. You certainly speak with great insight on the subject of dementia and Alzhiemers.
How appropriate that you shared this story on his birthday.

Penless Thoughts said...

Oh Linds what a beautiful story of love and family and the staying power of that love and family. I must say you brought tears to my eyes reading it. How well you told this story is amazing. Thank you for the ability and caring to do so.

Linda said...

What a beautiful, touching story Linds. I can only say how much I admire your love and care for your parents. It is a wonderful picture of selfless love. Your Dad sounds like a truly special man. Thank you so much for sharing his story.

Crystal said...

What a heartfelt post, Linds. I can tell how much you loved your dad and how difficult this time was. But also how much you respected his wishes and honoured his wishes. Amazing that this topic would come up on his birthday. (((( HUGS ))) as you celebrate his memory today.

Rebecca said...

A really lovely post. My grandfather had dementia but nothing like this. I hope your Dad had a good birthday, whereever he is.

Thank you for your comment on my blog :) You're right, it is still a novelty to find British people! I'll stick around, if you don't mind.


riseoutofme said...

You say he was an amazing man ....I would say he has an amazing daughter.

The sadness and sense of loss you must have felt while caring for him must have been, at times, unbearable.

Thoughtful, sad post.

Heidi said...

Oh Linds, I'm so deeply touched by this post. My grandfather died a similar death after years of confusion - thought from lots of tiny strokes in his brain over time. And it was so hard to see my Grandmother and Mom and her siblings worrying about him.

Thank you for sharing this touching part of you.

Lee-ann said...

Dear Linds,

Yes your dad was an amazing man but I see your determination in sharing this with others it is his legacy, he has given to this world a lady with much strength to make the world understand this illness so much better.

To think it takes from us our dear family like this......thank you from the bottom of my heart.

Barb said...

This is just heartbreaking, Linds. His remark, that this is a strange place for an engineer to end up, just made me cry. I'm so sorry that he and all of the rest of you had to go through this.

Colin said...

I will always remember that between Uncle Sidney (Lindsay's dad) and my mom, they knew everything in the known universe. Uncle Sidney had the biggest library in the world too, especially when you were only 8 years old. See you soon.