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Wrong hoping for an early death?

Discussion in 'Recently diagnosed and early stages of dementia' started by ScaredyCat, Apr 1, 2019.

  1. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    1,190
    Female
    Dorset
    The Banjoman was in hospital and treated with antibiotics for sepsis last summer. Even the nurses thought he was going to die but sadly he made a miraculous recovery. Whilst nobody wants their loved one to die, neither do we want to see them go through the indignities that dementia heaps upon them. Whilst sad, I was prepared to accept that his death last year would probably be the kindest thing for him. His deterioration since (including another spell in hospital for another infection) confirms my opinion and I know he is only going to get worse. As he has a pacemaker I cannot even wish for a heart attack to carry him off unexpectedly.
     
  2. Jale

    Jale Registered User

    Jul 9, 2018
    272
    Female
     
  3. Richard and Fin

    Richard and Fin Registered User

    Jun 10, 2017
    126
    Male
    Alvechurch
    Good Morning all...
    I have been reading these post and I feeling a bit on the low side right now...

    I was diagnosed in 2017 and it scare the life out of me... no pun intended, and it still does!

    They say that it is different for everyone, no two people go throught the same thing, but that doesn't help! I asked what they could do, or what I could do.. and being told nothing, just given Donepezel, which seems to have limited use... I can feel what was coming!

    Nobody thinks about it till it affects you, but the more I read and learn about Dementia, the more it becomes clear we know so little! Millions, if not billions have been spent on research and 99.6% of that has failed to produce anything to help... that is unless you say failure of something, eliminates something!? The 0.4% is those few drugs, like Donepezel, that are no cure and have a best a limited use. Why do I need to see the doctor... it seems my coffin lid as already been closed if you listen to all this negative ****... I'm patronised, treated like my brain has stopped working... it will not improve.... I can not learn anything else.... I will not get any better... only worse!

    People have said here about a quick death... and more hopefull a peaceful one, and I have like everyone else the same hope, because we all know... or should know that the the certainty is we will all die, but I am not going to just sit here and wait for it, because someone says, based on 99.6% failed research, there is nothing that can be done! I think this is the bigest failing of the medical proffesion when treating people with dementia... they stop us helping ourselves!

    I read everything I can and now reading the latest research into the idea of dementia being a problem with imbalance of several systems of the body and that is why looking for this one wonder pill to cure failed and still fails.

    I'm following the guidelines of this reseach and changing my life... taking control of my life... and having hope!

    This will involve diet, exercise, learning new things and loads of other stuff.... and when I hear, 'What is the point!?' I say, Hope, I'm living for something... if it fails, then what have I lost... but I intend to live a better, fuller and happier life!`

    I don't know what it is like to look after someone that you love as they are consumed by this monster, you must be so desperate to have those moments back!
    I can feel it in me... every day... I fight it... I have DNR tattoed on my chest... my funeral is planned, my daughter and son have POA and It is them that I feel most for...

    But I am here now... fighting... living, enjoying the sun and looking forward to tomorrow!

    Hope to you all and have a great clear and sunny day!
     
  4. Lawson58

    Lawson58 Registered User

    My husband has a defibrillator which will shock his heart to keep it going and I often wonder what will eventually happen. His dementia is progressing slowly and from my understanding it is far more likely to be his heart failure that will be the cause of his death than anything dementia related.

    Apparently, if the defibrillator shocks his heart, it will be very painful and there can be repeated episodes. I know that ethically, turning off the defibrillator is no different to withdrawing medication and allowing nature to take its course hoping that the person can die peacefully.

    But actually making the decision to turn off a defibrillator seems to be a much more significant step, a totally physical thing that someone has to do. I know that if there is a lot of pain for him, that it will be easier but it's not a very pleasant thought.
     
  5. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,425
    Male
    Cornwall
     
  6. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,425
    Male
    Cornwall
    Hi Richard & Fin thanks for answering my other post : just been reading your thread and I’m delighted your positive and ignoring a lot of the Doom & Gloom written about dementia because as you already said not everyone is the same and we all approach or demons individually reading you thread it appears your doing everything that necessary and important and you living life to the full.

    I have been on TP since March 2005 and believe me my friend nothing related to dementia has changed

    I was diagnosed with Alzheimer’s in November 1999 aged 57 and was asked to go on what back then was a new drug ARICEPT only prescribed by Consultants had to place a order at Chemist ok it widely used today and there is a genetic tablet donepezil ok some might say there the same I don’t know but I will only accept the Aricept, by the way back in Sep – Oct 1999 I didn’t visit the GP because I thought my memory was poor or because both parents had dementia the visit was unrelated to dementia , never the less I was asked if I would see a Consultant in Old Aged Psychiatry hence the diagnoses obviously I didn’t agree and spent next 3 years arguing my point and was sent for a PET brain scan in 2003 and SPECT scan in 2004 which showed sever damage to Temporal-Lobes so another diagnoses FTD .

    Well I survived almost 20 years up to today my FTD / Alzheimer’s hasn’t or isn’t holding me back never worried me I still Drive , go on Holidays although can’t get Insurance now because of other medical issues all serious enough but hay just live dangerously what’s the worst can happen.

    Unfortunately 6-7 weeks ago I was diagnosed with a Kidney Cancer which is the size of a 50pence piece at moment but hasn’t spread had a choice of operation or wait six months to see if its growing, I’m waiting and for a good reason we know all Operations carry certain Risk and for a persons with dementia Aesthetic is an added risk , but that wasn’t my reason mine was because my Brother-in-law aged 56 and Sister aged 73 both died as a result of surgery so bit of mind games for me Now this not Doom & Gloom my friend just facts

    So for me all Positives until September when I have next CT scan I said many time don’t worry about tomorrow it may never come, you’re here today and gone today, hopefully that a few years off for Both of us

    I know this appears to be “me”” me” just trying to say there are hundreds with a dementia diagnoses live good happy lives

    if this is difficult to read blame it on Dementia
    Cheers Countryboy
     
  7. Richard and Fin

    Richard and Fin Registered User

    Jun 10, 2017
    126
    Male
    Alvechurch
    Hi @Countryboy You have given me hope!

    I have left temporal lobe damage... thought I had only short time left; don't know why I thought this, don't know if someone said this, or just me!? I am well aware of my illness and that is one of the things that drives me crazy... I didn't think you were suppose to know about it... does that make sense?

    2005 you started here and no change! :( I am reading all I can, but so much conflict and lack of coordinated research... like all trying to have that magic moment; I found the anwer... or could it be money that drives the research!?

    Have you found many dementia sufferers here... or mainly carers? Would love to hear form more people like yourself.

    I'm so sorry to here of your kidney cancer diagnoses. Hard to decide what to do, but it has to be your decision. I will be thinking of you and hoping for the best!
     
  8. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,425
    Male
    Cornwall
    Hi Richard & Fin thanks for the good wishes, your comment “thought I only short time left” well if some one told you that I suggest you ignore those comments in future, if its temporal lobe damage I’m interested in what tests or investigative procedures you had . don’t worry my friend you will live for years yet enjoy it :):););)

    my reason for asking about your tests , I have temporal lobe damage on the Right side now I had several investigations before I got a diagnosis as follows Obviously don’t understand it all but this is it

    however here goes in May 2000 I had tests for : T SH, U & Es , LFTs, Calcium, Full blood count and ESR. CT Brain Scan, then had further detailed neuropsychological testing

    in February 2003 was sent for a SINGLE PHOTON EMISSION TOMOGRAPHY – BRAIN HMPAO or in easy terms a“ PET” Scan and in April 2004 a Brain-Cerebral Perfusion “SPECT scan which confirmed loss of Volume on the Right frontal- temporal- lobe .

    So in in my case it wasn’t just a simple memory test carried out by GP or Consultant at a clinic don’t worry my friend

    Your Question others living well with dementia WELL YES THERE ARE below is a photo of 6 members of the Leadership Group in total there were 8 members this was 2015 but of the 8 members 5 had FTD 6 of the members still drove their selves to and from the venue ages here were from 68 to 82 had to blank out Names & Faces for Data Protection and of course we were all selected through NHS and were together for a long time the arrow is pointing at me it was 4 years ago :):)

    Hopefully it come through as PDF
     

    Attached Files:

  9. SouWester

    SouWester Registered User

    Dec 11, 2012
    35
    Male
    Devon
    Sadly, in my view as it would be my choice were I a sufferer, Dignitas is not an option for anyone with Dementia. As I understand it their view is that anyone with Dementia is not in a fit mental state to decide to end it all. The ultimate Catch 22?
     
  10. holly_wood

    holly_wood Registered User

    Oct 19, 2015
    18
    My mum was diagnosed with early onset Alzheimers just before she reached 65, she is now in a care home at the age of 67. She can't walk, understand conversation, talk sense, sometimes eat or drink, she's doubly incontinent and swears a lot at the carers when they are trying to wash her etc. After 2 recent hospital visits, we have a DNR in place and a care plan to not keep sending her to hospital. This seemed really heartless at first but having discussed with a very helpful doctor we decided it was for the best. However, when she recently threw up blood, the care home and emergency doctor both expressed that they thought she should go into hospital and I felt like I was signing her death warrant by refusing. Two weeks later though she is no worse than she was before the sickness and without the additional trauma of being wheeled about in the middle of the night and poked at by numerous strangers. My brother and I have thought 'this is it' a couple of times now and prepared ourselves for the worst. I feel awful typing the words but its almost dissapointing when its not happened. Other than a few lighter or lucid moments I feel that my 'mum' has already gone. I just don't see any point in prolonging her life.
     
  11. mumsgone

    mumsgone Registered User

    Dec 23, 2015
    921
    after watching my mother die a slow death from vascular dementia and seeing my father this february die so uncomfortably from sepsis my attitude is you wouldn't do it to a dog !!! Why falsely try to prolong a life ? Who benefits ? Yes keep the person as pain free and comfortable as possible but do not intervene to keep a body alive when the person is no longer there !! May sound harsh but the truth is where there is no quality of life left what is the point ? I understand everyone has a different viewpoint and do not want to offend anyone this is just how i feel. Take care all xx
     
  12. Elle3

    Elle3 Registered User

    Jun 30, 2016
    618
    Apart from my dad having severe Dementia, diagnosed in 2017 but showing signs at least 3 years prior to diagnosis, I had no experience of my dad being ill or requiring hospital treatment. Apart from his brain and having no mental capacity, everything else was working just fine, he was otherwise very fit and active, too active in fact to be kept safe, hence why I finally had to make the sad decision to place dad in a care home last year, April 2018, for his own good. I kind of knew then, that this would be like putting the first nail in his coffin, I felt terribly guilty but I had to do this or risk something really bad happening to him and I couldn't live with that either.

    It took about 2-3 months for me to notice the difference in him. With the lack of exercise and outside stimulation he aged rapidly, he got slower, greyer, put on weight and became stooped. Over the months he also became doubly incontinent, aggressive, unpredictable and lost almost all of his communication and cognitive abilities, he couldn't feed himself and a lot of the time he slept, however when he was awake he seemed content and I think he still recognised me as some one he knew and trusted and on very very rare occasions there were little flashbacks or memories where he would say my name and I treasure them.

    Dad had only been in the care home 3 months when the Dr spoke to me and explained about a DNR and the decision for no Hospital treatment in case of contracting pneumonia etc. I agreed with the DNR but said I would like the hospital to treat and save dad if he became ill enough to warrant a hospital stay, I thought he was worth this.

    Dad had been in the care home just 11 months when he died suddenly with no warning of a heart attack, exactly how he would have chosen to go, I think if he'd had a choice. The DNR was in place, but the nurse in the home still tried to save him until the ambulance arrived. When they arrived they asked if there was a DNR and asked her to get it and show it to them and only then did they stop trying to save my dad.

    I'm thankful and relieved my dad's death was quick and I never got to witness him in pain or see his health and mental state decline any further. I still have good memories and it's not difficult for me to remember him how he was and to be thankful for every moment I spent with my dad. He was 82 and he'd had a good life.
     
  13. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,425
    Male
    Cornwall
    Hi Richard & Fin maybe you could check out if DEEP is in your area worth looking at my friend
    be Positive

    https://www.dementiavoices.org.uk

    What is DEEP?

    DEEP stands for the Dementia Engagement and Empowerment Project – it is the UK network of dementia voices. DEEP consists of around 100 groups of people with dementia – groups that want to change things.

    DEEP is: a UK wide network – it connects groups to each other to magnify the views, hopes and intentions of people with dementia. It supports groups to share learning and skills and to increase confidence

    · independent – the network belongs to the groups themselves, not to any particular dementia service or organisation

    · diverse – it is made up of groups strongly rooted in their local communities, including some in care homes

    · rights based – it encourages groups to identify and speak out about the issues that are important to them (not only to be ‘consulted’ about issues that are important to others)

    Cheers
     
  14. Richard and Fin

    Richard and Fin Registered User

    Jun 10, 2017
    126
    Male
    Alvechurch
    Hi Elle and I'm so sorry for your loss.

    The end was quick and hopefully peaceful, that is about the best you can hope for.

    I hope you are looking after yourself and seeking comfort from those around.

    Interested in this part of your post... 'With the lack of exercise and outside stimulation he aged rapidly'... I'm trying desperately to keep active and stimulated by doing lots of different things, but it get so hard sometimes and I just want it to stop!

    All the best!
     
  15. CardiffGirlInEssex

    CardiffGirlInEssex Registered User

    Oct 6, 2018
    42
    No, you are not alone. I too hope that one of the many other health issues that my PWD has will intervene and bring a swift and peaceful end before the full ravages of the dementia begin to wreak their havoc. And at the moment, that is their wish too. Advance Directive is already in place and I will ensure it is respected should the need arise.
     
  16. Snowdrops77

    Snowdrops77 New member

    Feb 20, 2019
    4
    Female
    Hello no your not alone. I feel just the same way. I care for my mother she has mixed dementia/Alzhiemers. She lives in my home now. If I am diagnosed with this disease it's Dignatis all the way for me, both my daughter's totally agree with my decision.
     
  17. huggie

    huggie New member

    Apr 29, 2019
    8
    I completely agree with you. Having seen what this cruel disease does to your loved ones. I am caring for my father who is far advanced and wont be with us for too much longer. I have seen how this thing! has taken away my dad, has left a shell of a person, has made a very proud and private person doubly incontinent, has taken away every part of quality of life that he had left. It becomes more like Gods waiting room. Waiting for your number to be called! I hate it, I am so angry at it. How dare it do this to my loved one! But if it would be me and I had any understanding left, then I would find a way to put myself out of the misery. I would not want to be like it ever. When the disease finally fully takes over, you would have no idea what is going on but your family would have to watch you suffer like it. Maybe to the point of starvation or dehydration eventually takes your life. As a society we would be done for cruelty if we kept an animal like it, yet we have to watch the ones we love the most go through this! Life is the most precious thing but surely we have to draw the line if we would choose so.
     
  18. 70smand

    70smand Registered User

    Dec 4, 2011
    265
    Female
    Essex
    #38 70smand, Apr 30, 2019
    Last edited by a moderator: Apr 30, 2019
    I have just discovered this thread and it must be so difficult for everyone to write their piece, whatever your view, but I am so grateful they did, so I am able to read it.
    My dad, having witnessed his mum with dementia following a stroke said ‘stick me in a home or shoot me - don’t ruin your lives trying to look after me.’ Years before presented with Alzheimer’s.
    The thing with dementia is that everyone is different, just like with cancer or ms, MND or arthritis or any other condition. There are similarities, of course, but we are all individuals in the first place and none of us act the same without any illness, so why would we just because we have the same label.
    My dad's journey has been a long one, probably over 16 years, and there has been a rapid decline in the past 2 years since medication for his erratic behaviour started on entering a psychiatric hospital and then a care home.
    I feel guilty that I have had such thoughts seeing my dad in hospital following a recent seizure then hip fracture and a pulmonary embolism. I’ve got tears writing this as I say that I wished something would happen and take him quickly when he was so poorly and suffering a couple of weeks ago, but both at 73 my mum was not on the same page at all. We both fought for him to be made comfortable and thought his hip wouldn’t get operated on due to his poorly condition - but thank goodness they did, purely for comfort. As soon as his hip was operated on he seemed more comfortable and just a smile and an ‘l love you darling’ to my mum and I meant the world to us, amongst all the blank looks and incoherent whispers, and made all our fighting as his advocate worthwhile.
    My dad was always fit and well but struggled to hide his symptoms and didn’t want anyone to know he had Alzheimer’s- he became very angry, frustrated and scared, but this sometimes came out as aggression and became increasingly difficult for my mum to manage.
    In order to help mum out and maintain her sanity I used to spend hours taking my dad for drives, to the gym, shopping in Costco and Decathlon for hours and I feel truly blessed that I got to spend this wonderful time with dad, but also guilty that I sometimes had the best times with him and mum had the everyday stuff, along with the everyday household stuff such as bills and maintenance and housework, cooking etc.
    Dad’s awareness was the most difficult thing, and the fact that he appeared so well and denied there was anything wrong with him.
    He is no longer aware, but constantly has my mum by his side and now I need to support my mum even more, as well as him. Each visit I get a smile or a happy reaction and will not leave him until I do, and it can change my whole day from a bad one to a good one with one reaction from him.
    Dad would have done anything for me or anyone else when he was able, so he deserves only the best back.

    I’m sorry for rambling, but I also understand how hard it must be for @Richard and Fin and @Countryboy to read so much and am so pleased you shared your experiences. Just as everyone is different I think your awareness is key to helping you gain the most of life, and finding out all you can to help you achieve that. Admittedly though, it does seem a bit of a lottery as to what’s available and where you live. But general awareness is a good thing and once my mum was honest and open about dad’s dementia she came across a lot of kindness and sympathy.

    Sorry to go on. My thoughts and sympathies are with everyone on here xxx
     
  19. Max68

    Max68 Registered User

    Aug 21, 2018
    74
    Male
    Sussex
    Seeing mum go from still being in her own home no more than 6 weeks ago to now being in a dementia ward awaiting a care home is so difficult and I have certainly had times where I "hoped" something quick and painless would take her. Now after she went downhill badly we are unsure if it's the dementia or delirium from hospital which has caused the quick decline but I couldn't really believe today that mum in a dementia ward today was the same mum who was having lunch with her old golfing buddies no more than two months ago!! Dad died in 2000 aged 59 of a quick heart attack. Mum is 83 and declining with this and I really can't say who was dealt the better set of cards!
     
  20. Palerider

    Palerider Registered User

    Aug 9, 2015
    715
    Male
    North West
    Others may differ but I think my dad was dealt the better hand of cards. He was admitted in early June 2015 having been unwell for 6 months, which culminated in an acute episode. By the second week of his admission he was diagnosed with an extensive lung tumour and mets. By the end of the thrid week he was in a hospice and died peacefully.
     

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