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What was once a funny, caring man with lots of friends and a big character had been replaced by someone else.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.

Beth Burgess

bethburgess2-672944

Alzheimer's and my Dad

So sorry to hear this Tracey, but I admire you very much for taking your experince and writing about it, which will help others in that position. Best wishes, B

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George Emsden

kestrel254-37732

Alzheimer's and my Dad

Dear Tracey Great piece about you Dad. Thanks for sharing it with us. I particularly liked your point where care homes don't tell you when something good happens, only when there is an incident. Last week, I visited my tribe in Suffolk and did the rounds of the family, one of whom is in a nursing home. Some aspects of his care concerned me and I ended up sending a fax to the care home over the weekend. To their credit, they telephoned me on Monday morning. My main concern was that his physical abilities already greatly hindered by arthritis and other things seemed to be getting worse and that he was apparently no longer receiving any therapy to cure or alleviate this. The answer is a bit more complicated and later I have been promised a detailed response to the care issues I raised - the letter will come from the GP. I am glad that I wrote and the care home was also appreciative of the extra interest from a member of his family. Finally Tracey, may I do your article as a guest blog? Thanks again.

1 comments

Tracey Finlay

traceyfinlay-643311

Alzheimer's and my Dad

We finally had Dad's funeral yesterday (nearly 3 weeks after he died, through papers being misplaced). It was a great service and the great number of mourners included some of his old band mates, which was great. Mum was positively giddy at the wake as she was reunited with days gone by of laughter and friends. We only made a slight nod to his illness and never mentioned it by name. It was suddenly no longer relevant. I wrote his eulogy and it ended up reading more like a best man's speech - all about his character. We can all move on and find peace now. Tracey

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Richard J Francis

richardfrancis1-363696

Alzheimer's and my Dad

Thanks for sharing your thoughts & experiences Tracey - you stand a little taller in the community for that. As so many have said - your Dad would be proud of you. Look after your mum - I agree the last two years cannot have been easy for her. Best to you

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Mike Bailey

mikebailey2-505835

Alzheimer's and my Dad

Thanks Tracey, Going through this at the moment with our Mum. Shes happy generally, understands incoming communication, but cant put together outgoing communication very well, or remember that shes said that 5 minutes ago. Seeing her with a smile on her face, especially when she has family around her, makes me realise she knows and understands and remembers, just cant always converse. But you know, when Im really patient, she does make sense if I give her the time to do so, she may have to describe things over 3 minutes rather than just naming the object outright, but thats a small price to pay, I'll give her 3 minutes (and more) of my time all day every day, however Im only visiting. My Dad (92 and the sole carer) understandably isnt able to be that patient 24/7. Being woke up at 3 am every day, curtains pulled, well at his age he needs the rest too, as you say, its the spouse too, married 62 years , impossible to grasp what hes going through seeing his lifelong loved one falling apart (possibly) infront of him, he does well in the circumstances. Putting into a home, costs money, they have savings so that will be used before the government step in, yet if they had been frivolous and spent their money on themselves more and so had no savings, the government would step in sooner, but no, penalise them (and us) for living their lives more sensibly, make them use up the savings , move my Dad into a one bed retirement place, sell their bungalow, death sentance for them both ? Mums pleaded not to go into a home, she put her Mum into a home many years ago, althzeimers too, and lost her a few weeks later. A once lucid, clever (would beat Carol Vorderman at the Countdown maths and complete tough cryptic crosswords) great communicator, while I realise she still is all of these, she is unable to show it but she still has a smile on her face (mostly) and that means a lot. Its perhaps one of the cruellest forms of suffering, 'we're all in this together' is very poignant. Your blog has helped me a lot, I thankyou for that.

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Anastasia Athans-Stothoff

anastasiaathansstothoff-120657

Alzheimer's and my Dad

Tracy, I want to give you a huge hug. I'm truly sorry that you lost your Dad to such an evil disease. I have a similar story - in my case it was my grandmother, "Katy," who was stricken. She was so lovely. Like you, I chose to remember her as the woman she was before. Of the many truthful and helpful remarks you made, one resonated deep within my heart: to go with the flow and not challenge. I want to add to that a sentence that was posted on the door of the Alzheimer's unit, it said, "You are now entering their world." It's so true. It's difficult to no longer be the person you were to your loved one. In a sense, you lose your identity too. But in order to cherish the time that's left and to know that they are feeling a sense of love before leaving this world, it is essential. Also, similarly to a person who has lost their sight but has their hearing and other senses responding with higher intensity; an Alzheimer's patient's feelings are enhanced. So what if they don't recognize you - it's not about you. Sounds harsh, but it's true. Instead, let yourself be a beacon of love and complete serenity. They will feel the love and know they are in a safe place. I'm volunteering at a nursing home Alzheimer's unit now. Maybe to give back and maybe to somehow, be with my grandmother. This brings up one more thought I'd like to give those people that are reading your blog that are now dealing with the same thing. Try not to let fear keep you away. I sit with patients and simply hold their hand. This is the world to them. Wishing you beautiful memories and a peaceful heart. With warmth, Anastasia.

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Otis Bess

otisbess-699261

Alzheimer's and my Dad

My deepest condolences, Tracey. My father suffered the same fate and it is truly hard to watch the person who was so crucial in your development regress to such degree. It is equally hard for someone who hasn't gone through it to understand the pain of hearing your loved one utter the words, "I'm losing my mind" and you realize that they meant it as a self realization and not as a figure of speech. I also understand the importance of placing them in proper care sooner than later. My father was a runner. As in he would run away in the middle of the night and I would receive phone calls from hospitals telling that my father was found wandering on the freeway... click. He must have died in my mind 15 or 20 times before he finally past. I truly hope that no one has to go through this but if you do never ever think that you're alone. Thanks again for this post, Tracey. Be strong and it DOES get a bit easier. O

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Tracey Finlay

traceyfinlay-643311

Alzheimer's and my Dad

Steve, I love the idea of U3A, there is an enormous need for this kind of thing. It's so important to exercise the brain in later age, even if it can't stop dementia, I strongly believe it makes such a difference to quality of life. When we made our regular visits to see Dad, we used to see the same faces each time of spouses who would make daily trips to visit their loved ones, simply to sit with them or make them feel loved and cared for. People don't realise that dementia has just a devastating effect on both the sufferer and the spouse. Support through the Alzheimer's is good but I feel there's something missing somewhere.... there are so many questions and not enough answers. Thanks Steve Tracey

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RealSteveHolmes Fading away soon

cvsage-38854

Alzheimer's and my Dad

Where we live there are many retired people and Cora's big in the U3A (University of the Third Age), an organisation that encourages it's members to pursue learning and culture after retirement. Almost every week she sees someone who recently had a normal life and an agile mind starting to break up and the impact on their aged spouses is simply tragic. Life as they knew it is just stolen away from them, sometimes after 50 years of marriage. It's an appalling problem.

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Andrew Priestley

mr-andrewpriestley-117953

Alzheimer's and my Dad

My mum suffered Alzheimer's and the last 2.5 years of her life were lovely. She was in extraordinary care and died peacefully in her sleep. I realise now that mum had onset about 10-15 years prior and she used to annoy the life out of me. I so regret my frustration and judgements. My mum lived in a small apartment and my sister used to visit her four times a day but in the end mum couldn't care for herself and my sister was stressed trying to. My wife and I had to impress that she'd done an amazing job but she could no longer give mum the care she needed. For example, mum lost the ability to recognise what a door was. So she was disorientated in any room. Mum would turn on an appliance and forget to turn it off. Mum would get lost going to the post box. My sister felt so much guilt but when they saw how much happier mum was that lifted. Mum went into a new facility and the carers were simply a God send. The last time I saw mum she thought I was a doctor but she remembered my wife! But I remember how happy she was. Incredibly she could recall all the words to the Sound of Music show. Tx for your blog. I'm sorry you lost your dad. Diane and I send condolences.

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Ruth Cheesley - Joomla SEO Specialist

ruthcheesleyjoomlaseospecialist

Alzheimer's and my Dad

Tracey, Thank you so much for sharing. My mother lost her father to an accident at sea when she was five, and her mother developed early onset Alzheimer's when she was around 8 or 9, meaning she had to effectively be raised by her two older sisters and brother. I never really got to meet her as she died about 15 years ago and the family lived out in Australia from the early 70's, but despite her Alzheimer's my mother has many fond memories of her mum - and the small details are the ones she remembers (I suppose being so young, she wouldn't remember many of the other details) like the kids having to sign her cheques for her. I can't begin to comprehend what it must be like to grow up with your only parent suffering with Alzheimer's, but this gives me some idea as to how my mother and her siblings have grown into the people they are now - very caring and compassionate, but also strong and able to cope with challenging situations. Interestingly my mother is absolutely adamant that if at any stage she loses control of her mental capacity to understand she no longer wishes to live, and I am absolutely sure she would make that happen if we didn't. I hope never to experience this situation but your blog has been really thought provoking, thank you for taking the time and courage to write it. Ruth x

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Adrian Traher

adriantraher-370818

Alzheimer's and my Dad

We are in the middle of it with my Mother. All your pithy comments ring true Tracey. Mum is completely gone, just a giant baby with receding skills but Dad is hanging on cooking three meals a day and maintaining very high standards. When she went into respite the Home ignored the carefully prepared Drug box and phoned the GP surgery who released a list of every drug that she has had in the last 5 years. They then administered ALL of them. She was delivered back 4 days later catatonic and dehydrated. No wonder Dad will not let her out of his sight. It takes 60 mins to persauad her to drink a glass of water or a cup of Tea. Adrian Traher

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Tracey Finlay

traceyfinlay-643311

Alzheimer's and my Dad

Thank you Lawrence I often wonder how much of his refusal to eat or drink was his desire to "Go to sleep and never wake up", something he said often in the last 2 years. I like to think it was his decision. Because of the severity of his condition by the time he was admitted into care, he was fully funded. The nursing home were great in the last weeks and we are very grateful to them for their care and support. Their role and actions are absolutely crucial when the end comes. I really appreciate your comments Lawrence. Tracey

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Andrew Field

andrewfield1-300430

Alzheimer's and my Dad

Tracey... thanks so much for sharing this with us all... it is a powerful piece. Bless you and your family and may your father rest in peace...

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Tracey Finlay

traceyfinlay-643311

Alzheimer's and my Dad

Thanks Julia Interestingly, Dad never forgot Mum for more than a few minutes - then he would remember, right to the end. But he did get confused as to who his daughters were. One day Mum said to him (pointing at me) "You know who this is don't you?" and he replied "I don't know who she is but I know I love her". It was those words that instigated my comment about Alzheimer's being a loss of logic and not a loss of memory. Alzheimer's is so much more complex than the media suggests. Tracey

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Julia McDaid

juliamcdaid-47153

Alzheimer's and my Dad

Tracey Firstly big hugs to you, sorry to hear of your loss. And so happy to hear you now remember the real dad :-) It hasn't been an easy time, yet from what I know, mainly from your blogs, you have coped remarkably, hats off to you.:-) I can relate to what you have written as my grandfather went through it, and my grandmother was in the same boat as your mum. I remember her saying when he passed that she lost him the day he no longer remembered her... and he remembered her for a lot longer than the rest of us. Its really not an easy thing to deal with, and so hard on the spouse, the decisions that have to be made and the whole experience is heartbreaking. I honour you for sharing this blog, I'm sure you will help others by doing so x

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Tracey Finlay

traceyfinlay-643311

Alzheimer's and my Dad

Thank you so much for such incredibly uplifting and supportive comments. I knew Ecademy would be the perfect place to write this blog. Tracey

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Fred Rutgers

fredrutgers-186363

Alzheimer's and my Dad

Dear Tracey, One word only for bth you and your dad! R E S P E C T !! Fred

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RealSteveHolmes Fading away soon

cvsage-38854

Alzheimer's and my Dad

Wonderful and informative writing. Thanks a lot. Many people will face this one day, one way or another.

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William Buist

WilliamBuist

Alzheimer's and my Dad

I know, because we talked a few days before he died, how much the last few days were both difficult, sad and a relief, and I understand that too from a different point of view when my mother died at the tail end of last year. Thank you for a phenomenal blog.

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Anna Figiel

annafigiel-87173

Alzheimer's and my Dad

An amazing account Tracey, thank you. I wish I could give it far more 'like' points. I identify with much of what you've written in the case of my late father-in-law Jan, who also stopped eating, drinking and taking medication when admitted to hospital in 2007. You are right that the sufferer's passing allows us to bring to the fore memories of the person they were before Alzheimer's set in. Unfortunately, I only met Jan after the first signs had started, so my memories are different to those my husband has of him and it's difficult for us to share the loss in the same way. I am so sorry for your loss. Anna x

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Carolyn Williams

carolynwilliams-253741

Alzheimer's and my Dad

R.I.P Tracey's lovely Dad, Anthony Charles Knighten, Thank you for thinking of others. Your account is articulate and fair. Your dad would be so proud of your acceptance. My thoughts are for you and your family's loss but admire your resolve. C:)x

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Georgina Lester

georginalester

Alzheimer's and my Dad

A phenomenal blog Tracey. Thank you for sharing such astute observations and most particularly your own experiences. I am sure that anyone else about to go through or who is going through a similar experience to yours will find this information immensely comforting and reassuring. Whilst I know through talking with you and from what you have written here that there have been many occasions when this has been incredibly challenging - I have no doubt that for others just knowing what the potential parameters are can give great insights into how we can adapt and deal with such a life changing condition. Hats off to you girl for writing it. I am sure that it will be appreciated by quite a few people in time to come. I agree with Angus. It is wonderful to read that last paragraph about your Dad Tracey! It seems like he was a great person to know. Happy memories.

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Angus Whitton

anguswhitton-88567

Alzheimer's and my Dad

I've been through it, I think the best way to look at it; is that it's an end to confusion and torment for both the sufferer and the family - and depending on your belief, a new life starts for both parties. Your last paragraph resonates with me. Keep celebrating! Angus

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Judith Germain

judithgermain-78129

Alzheimer's and my Dad

Wow, thanks for sharing Tracey. My thoughts are with you, call if you want to talk. Take care Jude

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Katie-Ellen Hazeldine

katieellenhazeldine-186355

Alzheimer's and my Dad

'And though the darkness round me close... 'Songs in the night, it giveth.' As you demonstrate so well here, 'love is lord of heaven and earth.' Please accept my sympathies.

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Robert Craven

robert-craven-22343

Alzheimer's and my Dad

Tracey Thank you for taking the time to tell the story Not an easy read but much harder to have written. Thank you. Robert

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