Alzheimer's and my Dad

Nobody wants to be or love anyone who has 'End stage Alzheimer's' printed on their death certificate, but that's what was written on the sheet in front of me when we registered the death of my Dad last week.My lovely Dad, Anthony Charles Knighten, died on 26th July 2012 - two weeks ago... His family lost him two years ago. His illness was probably 10 years in the making. His condition created very challenging behaviour and he ended up in a succession of nursing homes.What was once a funny, caring man with lots of friends and a big character had been replaced by someone else. - Someone we didn't know.After what seemed like a lifetime of the feeling of stress, fear, confusion, loss and so many other limiting emotions whenever I thought of my Dad, his passing has now opened up a new picture that was long forgottenÂ… The man he was before Alzheimer's.I now remember him for the great man that he was.I wanted to write this to help others who are going through the trauma of Alzheimer's in the family. It's honest, it's direct and hopefully useful and supportive. I've posted it on ecademy because it's a great community and I want it to be found by everyone who needs it.This is what I've learnedÂ…

  • Alzheimer's isn't loss of memory, it's loss of logic. Worth remembering if you think your loved one has forgotten you - they haven't. It's just locked away.
  • The symptoms of early-stage Alzheimer's are frustrating for everyone. You'll not have the patience you wish you had at this stage. Don't beat yourself up for it - your patience will come later, when you really need it.
  • Never blame a spouse when they get frustrated with the sufferer. Until you've been through it yourself, you can never understand the impossibility of staying calm and supportive
  • It's good to get advice to help you understand the condition. Learning how to manage challenging behaviour will make everyone's life easier
  • Don't challenge their thinking when it makes no sense; go with the flow
  • Anger is directed often at the one they love the most. Those two emotions are intrinsically linked and Alzheimer's removes the ability to distinguish
  • My worst day was the one where I first saw Dad sitting in a hospital ward for the mentally ill. My Dad - looking lost amongst people who were shouting, crying, staring. A daughter should never see that.
  • Some people with Alzheimer's go to a happy place in their minds. I saw some dancing, singing - they were having a lovely time. It's not so terrible for everyone
  • Never under estimate the stress suffered by the spouse. Mum had a stroke (she's okay now). They need real support
  • Don't wait for the 'right time' to put your loved one into care. It will never feel the right time. This is where the spouse needs real support. I'm sure most leave it later than they should. Mum did.
  • Unfortunately, care at home is never available when you need it the most - Evening and night time
  • If the spouse is getting no sleep and can't control the behaviour well, then they're not the best person to look after an Alzheimer's sufferer. Everyone suffers more.
  • Beware the 'Sundowner'. Where behaviour gets more challenging early evening.
  • Some people in the caring profession are amazing. Some are not. This was the case in all 5 nursing homes that Dad stayed in - no exception.
  • Nursing homes have a rule that means they have to ring you every time there is an 'incident' and something bad happens. Unfortunately the same rule doesn't apply if laughter breaks out
  • People in charge of Alzheimer's patients sometimes forget to tell you the good stuff that happens when you're not there. You have to ask for that.
  • Lucidity comes and goes. Good moods come and go. Go with the flow
  • As the condition advances, it doesn't matter to the sufferer what the carpets and curtains in the nursing home look like. They create their own environment and their world is different. It's the quality of care that matters.
  • Philippino carers are amazing. They have caring built into their DNA
  • Carers in nursing homes get stuff wrong sometimes. Don't look for mistakes, look for patterns of care. They can't be perfect all of the time, especially in such a challenging environment. Don't be too quick to judge.
  • The higher up people get in the caring profession, the more disengaged they seem to get. I hated talking to Doctors, they saw the case, not the man. The people I wanted to talk to were those who changed Dad's bed.
  • When the end is near, you need those in charge of your loved one to be honest, clear and empathetic. Training's not great in this area and you often end up with wooliness, caution and sympathy.
  • You never know what will take them in the end. My Dad had to have an infected plastic hip removed. He chose never to eat or drink again and after a month his body gave in.
  • Don't feel guilty about your mixed emotions when they finally go. The mixture of grief and relief is normal.I've now forgotten the man with Alzheimer's. All my memories are where they should be - the musician, the singer, the funny man, the larger-than-life character, the man with the big heart - My Dad.