1. Expert Q&A: Living well as a carer - Weds 28 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Wednesday 28 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Cancer care vs dementia care

Discussion in 'I care for a person with dementia' started by Chook, Nov 8, 2015.

  1. Chook

    Chook Registered User

    Jun 14, 2013
    238
    Westcountry
    I was speaking to a friend last night whose mother is sadly dying of cancer. She has been in Hospice for the past 5 weeks. She said that they cannot do enough for her mother and for her. Her mother has daily foot massages and the family is also entitled to this, counselling and more. I think this is wonderful.

    Meanwhile, I'm looking at grim homes that smell of wee, where the residents are ignored, left slumped in their chairs looking sad, lost and lonely.

    I know that people are in hospice for a short period of time but I'd love to see a time when people with dementia get similar care. And their carers!!!! I feel carers of dementia are being abandoned.

    Love to all
    Chook
    xx
     
  2. jan.s

    jan.s Registered User

    Sep 20, 2011
    7,352
    I totally agree with you. Both diseases are devastating, but it's almost like dementia isn't recognised as an illness.

    I'm sorry you are looking for a care home, and hope you come up with a good one.

    J x
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,748
    Female
    Scotland
    Chook how I agree with you. I am struck with the difference between most of the care homes I have looked at and the day care centres.

    In the day centres people are kept occupied and amused and the atmosphere is one of enjoyment with staff fully engaged. In care homes other than one stand out choice I felt that staff wanted to do anything but spend time with patients. Given the set up I don't blame them but it doesn't have to be like that.

    I see no reason why those with experience in day centres are not taken on to run what is effectively a day centre within a care home for those still able to participate.
     
  4. Spiro

    Spiro Registered User

    Mar 11, 2012
    522
    I think some, if not all, hospices are charities.

    To provide the same level of care for people with dementia and their carers would require far more funding. When the NHS was designed to care for people from the cradle to the grave (they weren't thinking of dementia).:) The costs would be astronomical.
     
  5. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,629
    North West
    It's true Spiro that the NHS wasn't designed to care for people with dementia but what I learned only recently from the Prof Luke Clements lecture is that there was a National Assistance act passed at the same time which did cover care for people with dementia. Admittedly, the provision at the time would not be acceptable now - people were wharehoused in massive sheds attached to hospitals - but at least some provision was made.
     
  6. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    I think the care for people with dementia is dreadful. As for us carers all we have are people that 'sign post'. I've had my fill of 'signposting' and nice shiny leaflets. I understand it's because of funding - but don't they realise that a lot of those people that are cured from cancer will go onto develop dementia if they don't increase the funding for that. The social care for dementia and AD is a national disgrace.
     
  7. Earthangel

    Earthangel Registered User

    Feb 8, 2014
    14
    South Yorkshire
    There are good dementia care homes - especially in Doncaster.....

    Hi Chook

    My dad died of cancer last year, but he wasn't ill enough to go in a hospice and he died suddenly after two days in hospital - but he was 87. However, my mum is 81 and still lives at home, but I would like somewhere very nice for mum to be cared for, but with her own independance. I would like a flat in a care home, so when she needs care she can get it. She has moderate mixed dementia - vascular and alzheimers, I go 40 hours a week, but I can't do anymore, I am married, live 12 miles away and my husbands parents are deteriorating now. I have always put mum and dad first, I am a only child, we went on holiday with them etc.... now my husbands parents are aging, I am worried my husband is going to regret not doing things with them and I am going to get it in the neck, that it was always my parents. My excuse was I am a only child and there is no one else to care, he has a brother and sister but they don't do anything, just live their life, we do everything and I am getting depressed, feel guilty all the time and I need to gain control of my life. My mum is very selfish at times, thinks I should be there all the time and has no time for my husband.
     
  8. Chook

    Chook Registered User

    Jun 14, 2013
    238
    Westcountry
    That's so true. It would be good if day centres were part of a care home so the residents could choose to visit too.
     
  9. Chook

    Chook Registered User

    Jun 14, 2013
    238
    Westcountry
    Yes, they are charities. Perhaps the Alzheimers society could do something similar. Or at least arrange volunteers who go into care homes offering support. ;-)
     
  10. Chook

    Chook Registered User

    Jun 14, 2013
    238
    Westcountry
    I love the idea of those dementia villages. Must be amuch happier place to be.

    You do have to think of yourself and your family too. Mum had to go into a care home last christmas after having a massive bleed on the brain. I still visit her 2-3 times a week and although I don't have to see her every day, I would still like some support. It's so incredibly heartbreaking when someone you love has dementia.

    Wish you luck with your parents
    x
     
  11. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    In our area we have flexicare housing. Flats within a sheltered housing complex where a care team operate 24 hours a day and you buy your care package or have an outside carer come in. Family still help with the washing etc if they can but there is a lunch club and activities on offer. It is a great system, we need more flexicare. Some authorities are really good at it. It is sometimes also called extra care housing, well worth looking out for and even if you own your own home you should be able to argue that housing is needs led
     
  12. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I do agree about the difference in care, care homes have no excuse for smelly rooms, or lack of activities - have you ever met a poor care home owner? Just doesn't happen, they are mostly millionaires living off other peoples' misery, same with care agencies. The costs of hospices are astronomical but they do have lots of volunteers. If we could get the community into the care homes the residents would have a much better quality of life. How do we do that - people need to commit one or two hours a week to go in and start a knit and natter club or a board games club or a car club or anything that might allow residents to have a peep of their former lives. So often the day the front door of the care home shuts is the last day that the resident is a part of the real world - no wonder there is fear - that is the responsibility of all of us! Rant over
     
  13. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,293
    SW London
    #13 Witzend, Nov 8, 2015
    Last edited: Nov 8, 2015
    I well remember being horrified many years ago when very first looking at care homes for FIL, at seeing people just slumped in chairs, like sleeping cabbages.
    However, there comes a point with many people with dementia in later stages, that they are no longer capable of taking part in activities, and do not want to be carted about or 'jollied' into activities they can no longer understand or enjoy - they just want to be left to doze in peace.

    My mother was like this for the last couple of years of her life, and so were several others in her very good care home. She was there for 8 years, so during that time I saw many other residents decline. So what I am saying is, just because you may see people like this, please don't assume that they are necessarily being neglected or ignored. It may well be the kindest thing, to leave them in peace, if they are no longer capable of taking part in anything. Quite a number of people with middle + stage dementia do in any case want to sleep more than the rest of us would consider usual.
     
  14. Chook

    Chook Registered User

    Jun 14, 2013
    238
    Westcountry
    I loved your rant!

    I've learnt that people are terrified of dementia and don't want anything to do with it. Volunteers are generally people how have already been touched by dementia.

    Just someone to go in and have a chat with people would be a great stimulation to many.
     
  15. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Although I agree Witzend that some people do need to be left to doze, it is the atmosphere of a home that really gives a clue, some are gloomy and demoralised places others are joyful and happy with everyone living within their limitations but not limited by their environment. Chances are if they stink then they stink through and through
     
  16. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Thank you chook x I regularly rant in our local community on the principle that if lots of people did a little bit then life would be so much better in care homes :)
     
  17. jan.s

    jan.s Registered User

    Sep 20, 2011
    7,352
    My husband did live in one with a day centre, but wasn't allowed to go.
     
  18. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    That is unbelievable - or is it? Have the facility and then restrict it. Our Council tried to stop people in extra care housing going to our local lunch club where they had been going for years by saying they had a facility and so they couldn't have transport - we fought that one and won.
     
  19. jimbo 111

    jimbo 111 Registered User

    Jan 23, 2009
    5,078
    North Bucks
    Some two years ago I wrote the following post abut my feelings on the vexed subject of funding of dementia and cancer
    Now two years on I find that my thoughts at that time have not changed .
    Being personally involved with my wife's Alzheimer's and my continued membership of TP I have a very good knowledge of the traumatic experiences of so many people who write on this forum
    I still feel for those who suffer in so many ways with the exhausting and never ending need to care for their loved ones- but, as I witnessed during my months in hospital and subsequent treatment at the Macmillan Unit so many of the cancer victims are young people , with many years of fruitful life in front of them if a cure can be found .
    jimbo

    Posted two years ago--------

    " I find the topic of comparing the money spent on cancer or dementia very disturbing
    It would be a wonderful world if we could afford to fund research and care for all the major diseases ,and we all have our own views on where the money will be best spent

    My anxiety arises out of the comparisons made about the funding and care of cancer and dementia ( in all their forms )
    I know that some members of TP also suffer with cancer and dementia , and many carers have relatives and family who have both ,it would be of interest to share their opinions
    Whilst I do not expect my views to be accepted by all ,I feel deeply concerned that my views are perhaps disproportionate, and it would help me to understand my attitude

    At my age I have seen a fair proportion of people suffering with all manner of illnesses
    My wife suffered with Alzheimer’s and died (aged 81 ) four years ago after a long and traumatic illness
    As you would imagine I have very strong views on all matters concerned with dementia
    In all its forms .Memories I shall hold for the rest of my Life
    In the past year I have developed a blood cancer that has completely taken control of my life
    I have witnessed many times in the months I spent in hospital and the chemo therapy at home and at the Macmillan unit the affect cancer has on people over an enormous range of ages
    To summarise my dilemma in comparing the research funding and care of cancer and dementia
    Perhaps a part of my recent experience In both diseases may help
    For some 4-6weks of my stay in hospital I was in a small 4 bed ward, opposite me , like something in a tableau were two beds One occupied by a ’young man of 50-52 with a wife and three children who was suffering with cancer of the stomach and was having to wait for treatment and operation
    In thhe next bed was an old gentleman ,same age as myself who had a haematology problem , but was in late stages of dementia
    He was doubly incontinent, nurses and family struggling everyday feed him, in constant need of attention ( day and night)
    It is obvious that with the enormous increase of dementia in the world it is important that research should have a high priority
    But my hospital ( and personal experience with Alzheimer’s leaves me with the dilemma
    If I had to name the priority which would it be ?????
    I have seen so many younger people ( like the man in the bed opposite ) who hopefully will have a worthwhile life in front of them and to enjoy his children and their future
    The poor old chap in the next bed can only be treated with so many drugs that he hardly exists
    I have lost my own parents ,and all my siblings and I am well aware of the sentiments of ‘still recognising some of the old person ‘ even though their medical and mental condition is beyond rehabilitation
    Many of us say to our children God never let me carry on in that state , but hypocritically we do next to nothing to solve that problem ourselves, and leave our loved ones to face the same dilemma
    My conclusion is that if a choice had to be made I would opt for the funding to be available to the younger people ,with hopefully a fuller and happier life with their family for many years

    Many may disagree with me , and as I read this back I am aware that it is a bit of a ramble
    ,but the writing of it has helped me to understand my own thoughts
    I see no reason why I should have upset members and I hope I have not done so, I also have suffered my own traumas
    In fact apart from helping me to understand myself ,I am sure that this post will be read by a few and ’lost’ in a couple of days
    jimbo 111
     
  20. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    #20 fizzie, Nov 8, 2015
    Last edited: Nov 8, 2015
    My husband died two years ago from a haemorrhage when his cancer eroded into the aorta. We have two teenage children. My Mother died last Christmas having had memory loss for over 4 years and been cared for at home. My husband had fantastic treatment both at the hospital and at the day hospice. My mother who was 91 and fully active and supported completely by us at home for the whole of her illness was treated appallingly by our NHS trust and they killed her in the only 3 days she spent in hospital in over 80 years. I rest my case, everyone has to make up their own minds on this one.
    .

    .
     

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