Sailing SV Cordelia: June 2022

My mum died of Alzheimers, her mum died of Dementia. The difference between the two is 'Dementia is the term applied to a group of symptom's that negatively impact memory, but Alzheimers is a specific progressive disease of the brain that slowly causes impairment of memory and cognitive function'. That is the easiest way to differentiate between the two. However, it is very easy to assume they are same thing.

Mum & Nan

My nan who reached the grand age of 90 was also deaf. She had been deaf since the age of 4. Life had never been easy for her and having dementia was very difficult. When my grandad passed away it was not long before she needed full-time help. A home that could help for someone with dementia and deafness was found on the Isle of Wight. They were brilliant and she loved her life there with friends that she had made many years before who were in the same situation. She would remember little things like her name, her children's names. She knew she knew you, but she didn't know your name if you weren't immediate family. She was able to walk, play games and loved interacting with other people. My nan was a person that was full of life until the very end. Nevertheless she still had dementia and in her latter years couldn't remember anyone or the general day-to-day routines of hygiene or housekeeping.

My mum on the other hand had Alzheimers. It started when she was in her late fifties. We all noticed a difference in her and she also noticed it. At the age of 67 I was attending a memory clinic with her. Her memory was slowly getting worse. She was still very active though and at 71 decided she wanted to take up Senior Netball in the local village hall. It was here that she had an accident falling over that resulted in her having a hip operation. Almost immediately she came out of surgery we noticed a difference in her.

Whilst she was still in hospital she was telling stories that were hugely theatrical. The great grandchildren thought it was hilarious, but we knew something was not right. All of a sudden out of the blue I got a call from the hospital at 8pm one evening. Could I go up and see if I could calm my mum down. I raced up the hospital and she was throwing fire extinguishers at the nurses, screaming about things she had seen the doctors doing (all totally not true and far too explicit to write here). Eventually I calmed her down and got into bed with her and talked until she fell asleep. That was one of many many times I was called to the hospital to help sort my mum out.

Mum with Matthew, Jessica & Izzy
Southampton General Hospital

Mum with Zed & Zack
Parklands - Basingstoke

I had Power of Attorney for my mum and eventually they told me that the operation had had a bad affect on her and that her Alzheimers had gotten worse very quickly. I was told she could and would be violent, abusive and not realise she was being like it. She was moved to a secure ward where she could not escape and I was able to go and see her whenever I liked. There were so many incidents that I find it difficult to remember all of them, but from barricading herself and other patients in a room because of a war that was going on outside, fighting with the nurses and doctors, telling awful untrue stories about the doctors, throwing a fire extinguisher through a 7th floor window, throwing her food around, colouring patients faces with marker pens, it went on and on and on for 27 weeks.

Mum could get out the ward if she was escorted and there were many funny times during her stay there. I once took her to the pub for lunch and met her sister and brother-in-law there. I knew if she told the nurses they wouldn't believe her so it was perfect. Funnily, she did go back and tell them she'd had a lager and lime in a pub, obviously they didn't believe her, much to my amusement. I bought her a tambourine because she said she wanted one. When she was 16 she used to play in the Salvation Army. I was stunned to see her play it like a professional. Never in all my 50 years had I seen her play a tambourine, she was amazing.

Mum at Kitnocks

During all this time we (her sister Sue and I) were trying to get her into a private secure home and finally one came up. We went to visit the home first and they assured me they looked after all levels of Alzheimer patients. Mum had a bad habit of punching and kicking people, out of the blue. She would have her own room and bathroom, it was perfect. At long last my mum could leave the hospital and knowing she was being looked after I could take a break. It was during this break that I got a call from the home to say there had been an incident and that they had had to section her and send her to a secure unit (once known as asylums). I was shocked. Her medication and the new home should have been enough to keep her calm.

Once again we raced back because I had all sorts of images going through my head of my mum in a locked up cell, white jacket on and no windows. This couldn't be happening. When I got there the place couldn't have been further from what I was imagining. It was a quiet small ward of about 20 people, all who had Alzheimers or Dementia. There were gardens she could walk around, she had her own room and I was assured that after about 6 wks of therapy she would go back to her private home.

It was here that she was diagnosed with Psychotic Alzheimers. Once I had been explained what was going on with her brain it all started to make sense. Everything that had happened over the past 9 months. I was told that nothing would make sense to her, black was white, yes would be no, right would be wrong, day would be night - everything would be upside down for her. Eventually she may stop talking and walking because her brain would not remember how to talk and walk. If she was lucky she had a year left with us, she was 72 years old!

Mum in the Southampton Hospital Secure Unit -
Mum used permanent marker pens as make-up!

What in fact did happen was that she fought a lot with the nurses. One day she closed her eyes and would never open them again, she could hardly walk a step without help, she forgot how to swallow and so her food had to be syringed into her mouth, she stopped talking, but she did sing with me. She allowed me to paint her nails, even though she didn't see them. She walked with me in the gardens even though she could not open her eyes. She played her tambourine for me and others in the recreation room, again with her eyes closed. She told me the names of her children, but didn't know I was her eldest. She told me stories about where they had gone that day, but she hadn't left the building. She truly believed that they had daily outings, which to me was fantastic she thought that, because the thought of her day-in and day-out just sat or laid with her eyes closed for 24hours a day broke my heart.

Every now and again there would be a glimmer of the old mum I knew. She wrote a book many years ago about being the child of deaf parents 'My Parents Voice'. I took a copy of it to read to her and this triggered memories that weren't even in the book. It was amazing to listen to her. However, quickly she started to go downhill. She lost so much weight and one evening, an hour after I had got back from seeing her I had a call to say I should go back immediately. I called my brother and sisters and got in my car for what I knew would be the last time I would see her.

She spoke to me and her sister Sue very briefly and then with my sister we sat with her the entire night but she never said another word. She passed away peacefully cradled in my arms, even though her last 18months of life had been a living nightmare.

It may be wrong of me to say that I was relieved, but I was. Not just for my mum but also for me. I had been driving 100 miles a day to see her for nearly a year, been fighting her case from almost day one to get her the right medication, the right home, the right nurses. I had seen her go from a vibrant woman who was my mum and who knew she had Alzheimers to a psychotic woman who punched me and called me names, who I watched fight tooth and nail with nurses that had to hold her down to sedate her. I was happy she was in a better place now and could rest the diseased brain that was killing her.

Now to how Alzheimers has helped me. Mine and Steve's decision to go and sail as far as we can for as long as we can was even more important than ever now. When my mum had her full faculties she once said to me 'I regret not going to live in Australia when I wanted, you should go and see the world in your boat'. I know it's not a full gone conclusion that I will end up with Dementia or Alzheimers and I don't live every day of my life thinking that it is going to affect me, but it did help me decide what I want to do with my life. What I do is make every day of my life worth living.

We set a date to set off sailing and worked on the boat to get her ready for that day. Our family already knew that one day we may go, but now they had a date.

I don't want to ever stop travelling whilst I am able and if life should change for me Steve has agreed he will tell me if he notices that difference in me. He has said as long as he is able to look after me and still travel we will, even if it's not in Cordelia.

Steve and I have a fantastic life. We laugh a lot and we talk a lot. Whilst we can still sail, we will travel as far as we can for as long as we can. I may live until I am 90 like my nan did and how wonderful that would be. Whatever my future holds I know I have lived life to my fullest, been places many people only dream of going, met people that are now part of my memory bank, eaten foods that I never knew existed and most of all will spend this life with someone who knows me so well and makes me the person I am.

I create videos of our travels so that if I do start to forget, Steve can remind me. I write blogs about our adventures and whatever takes my fancy at the time, like this one. Live life to the fullest, it's too short to waste. We're only here once so make it count 💛