Dementia has made me rethink my stance on Cancer

Discussion in 'I care for a person with dementia' started by Summerheather, Feb 22, 2015.

  1. jfmb

    jfmb Registered User

    May 25, 2014
    9
    Don't feel bad about it - I know exactly what you mean - we can't choose how we die or what finishes us off - but dementia would be up there if not number one of the worst ways to go. Also when a loved one (my father) is dying of cancer they and you get all the sympathy the Macmillan nurses etc. With my mother and her vascular and frontal lobe dementia - no one shows any sympathy and your lucky to get any attention from the GP etc. When I read your post I felt so much better about what I have thought and been feeling the last couple of years
     
  2. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    No, I thank you all for commenting, for making me feel normal - unless someone has been in our shoes they have no idea
     
  3. stu100

    stu100 Registered User

    Feb 4, 2015
    70
    Birmingham
    #63 stu100, Feb 28, 2015
    Last edited: Feb 28, 2015
    I agree with canser is normally quick but u have years with Alizamers witch just gets worse don't feel bad with ur sealf u r doing ur best it's easy for people to juge unless thay leave lived with it thay don't know what it's like u r doing a brilliant job jfmb not everyone would do it my nan has got vascular Dementia I live with her I do my best to let her do what she wants to do
     
  4. Beate

    Beate Registered User

    May 21, 2014
    11,624
    Female
    London
    I just watched Still Alice in a preview and she says: "I wish I had cancer. Then I wouldn't feel so ashamed. I wouldn't feel such a social... I can't remember the word now."
     
  5. stu100

    stu100 Registered User

    Feb 4, 2015
    70
    Birmingham
    I seen that film it's really good
     
  6. uselessdaughter

    uselessdaughter Registered User

    Jun 8, 2009
    249
    West Country
    Coming to this thread a bit late in the day. As many have said there are no good diseases to have but I do understand what people say about having some sort of timescale.

    Purely from my own point of view (I know Padraig has said he has had no support) the thing I found most frustrating was the lack of support when Dad was still living at home. For example, it took endless hassling by us, his GP and consultant for SS to come an do an assessment on Dad (9 months) and brother never did get a careers assessment. Lady from Alz Society kindly offered to go and see Dad, remind him that he had AD and to ask him to be more empathetic to the fact we were trying to help him. We didn't want him upset by reminding him what he had. The consultant's secretary would never let me speak to him despite him telling my brother that as I lived so far away I could always ring an talk to him.

    Whereas, my best friend who has Parkinson's has a dedicated nurse she can ring for advice at any time; my elderly neighbour who has recently had an operation for cancer is visited by someone from his GPs practice visit at least once a week and when he first came out of hospital a carer was sent to stay with him every night for the first week; my sister-in-law's family have unfortunately many cases of cancer but she tells me that they never felt they were just left to get on with it like we were with Dad.

    Maybe its just where Dad was living. In fact when I first spoke to his consultant's secretary she actually said, Oh no, your Dad is covered by ******* Social Services, I'm afraid they're useless" and so they proved to be..

    As I have said before, my only real source of information and support outside family, came from TP.

    Please excuse any typos in this, the keyboard on our new laptop is absolutely c**p!
     
  7. Rubylou

    Rubylou Registered User

    Jan 20, 2015
    18
    Female
    Cambridgeshire
    Hi people, having read through what everyone has said and how summer heather has started this post, I can't tell you how much better I feel about everything. My husband was diagnosed last sept at age 59 with early onset of Alzheimer's. Jealousy that it wasn't cancer was just awful, I felt such a bad person for having those feelings , I kept/keep telling myself it's only beCause I don't want him to suffer and live like that. This seemingly endless path we are now having to walk along.
    I know some people mentioned that cancer is not fun either and I don't for a moment take anything away from that or that fact that people too suffer whilst fighting it.
    No, there is no right way to die or better disease to have, but some seem crueler than others, demoralising and undignified. Harder for loved ones/carers to cope with and keep going caring for the person that is slipping away from the person they once were.
    Forums like this don't make things go away but provide such a valuable source of support. Through my life I have always felt that no one knows what you are going through unless they are too in the same position, so for me that makes all the difference.
    Thank you talking point for existing and thank you every one for sharing and supporting!
    X
     
  8. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    This is exactly why I said it - I thought it would be safe to say with people that surely would understand exactly what I meant by it. I'm not taking away anything from Cancer, I just wanted to let out my frustration - there is no cure and there is very little support. Memory Clinic is every 3 months and between that nothing - and prior to Christmas - Memory Clinic actually rebooked their appointment 3 times. Occupational Health has rebooked their appointment 4 times - still haven't seen them. It makes me want to scream!
     
  9. Rubylou

    Rubylou Registered User

    Jan 20, 2015
    18
    Female
    Cambridgeshire
    I feel for you so much, it makes me realise how lucky we have been here (cambridgeshire) first docs appointment in June and diagnosis in September with sooo much help and support its amazing.
    The frustration is massive and the 'not knowing' how long until our loved ones go, is just awful. It's often on the news and such about research that is going into dementia but I often feel it's going to be too late for any benefit for us. However if our teen daughters are at risk if hubby has the gene , then maybe it's their generation that will benefit.
    Whatever , whoever it's just awful situation to be in however young old severe or mild.
    That's so unfair of your appointment to be rebooked that much, I just hope that you get seen soon and things can improve for you someway.
     
  10. missmarple

    missmarple Registered User

    Jan 14, 2013
    206
    Totally understand where you are coming from and i feel the same. Dad was diagnosed 3 years ago and i have had to pick everything up as he is a widower. Mum died 20 years ago, of a brain haemorrhage, within 36 hours. In between those two there is cancer, which while certainly not a picnic, means people generally retain all their faculties and their loved ones have time to prepare and do the important stuff. Ironically Dad has always been terrified of cancer (a generational thing I believe), would not even say the word. I think that with the steep rise in cases of dementia, society will start to look at cancer differently. Especially as around 50 % of cases are now curable.
     
  11. Padraig

    Padraig Registered User

    Dec 10, 2009
    1,039
    Hereford
    While we're at it, which of the many types of cancer would you choose over Dementia and why? That's assuming you have had personal experience of the one that you chose to pick.
    Some people have experienced wonderful care and support given to Loved Ones with cancer and assume it is provided in all cases. From personal experience I'm still looking for advice on how to overcome daily pain. On Friday afternoon, I Emailed the cancer website outlining my problem. Saturday I received a reply providing details of their operating hours. This afternoon, three days later I'm informed that my enquiry has been passed on to a person who deals with my type of problem. One lesson I learned during the AD years; was always be ready to expect the unexpected.

    It would be nice to learn from the opinion of more people who suffer with AD on TP. There are only a handful, if that, who post. Regularly I visit a US wed site and they have two section for people with Dementia. One is for Early On Set. I've found them extremely informative regards to how they feel, their views on care, and the attitudes of 'caregivers' in general. We are all in the same boat and the dam thing leaks.
     
  12. Owly

    Owly Registered User

    Jun 6, 2011
    538
    This is one of the main reasons why dementia can be so much harder. The person with cancer is still the same person, albeit frailer. But the person with dementia can become a total stranger, the opposite to how they have ever been in their lifetime. An adult reverts to being like a toddler, and yet they still want to be in charge of their life. There are battles of wills because of that last point. It must be absolutely awful when your spouse becomes the absolute opposite person to who you married.

    People with cancer know and accept (in time) what is happening and are usually grateful for all help received. People with dementia can throw your help back in your face with the assertion that there is nothing wrong, when you know only too well that there really is.

    People with dementia living with you can turn your entire household into mental chaos with their confabulations, hallucinations and false stories about what did happen or is happening.

    Given a choice of inevitably getting one or the other, I'd pick cancer.
     
  13. Chaucer 1931

    Chaucer 1931 Registered User

    Mar 30, 2014
    226
    I think the lack of publicity-public information about AD and dementia,very limited efforts of fund raising for reasearcg or the jolly little advert with the Beatles song that in my opinion does nothing to educate the public in general about how devastating dementia is to not just the sufferer but the whole circle of people in that persons life if they have any family or friends. Most people think of a forgetful old lady who can't remember where she puts her glasses and such,when they hear of someone having dementia. Not the reality of every post that TP members go through on a daily basis.
    Adverts and fun runs for Cancer and funding Macmillan nurses are a part of daily life-TV,social media,radio,where is the same happening for dementia??
    Until this hush hush,can't talk about the horrors of life with dementia mentality is addressed and people are made aware of all the facts,then AD will continue to be the disease that is seen as the second worse thing to get next to cancer.
    Also cancer and dementia has respectively killed most of my family off-the remaining aunt has VasD and multiple sclerosis and her brother,my remaining uncle has bowel cancer/liver cancer,my mum their elder sister has AD and VasD-had it for years,I can't hold a conversation with her now,but my cancer riddled uncle can talk to me anytime he likes.That says it all to me.
     
  14. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,041
    Merseyside
    My mum had cancer & it killed her in the end. The process was far from nice but mum was mum right up to the end & she kept her dignity.


    My dad has dementia. He is changing from the person I know & love into a stranger.

    I'd choose cancer above dementia.
     
  15. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,127
    eastern USA
    What an interesting thread. I can identify with your frustration over not knowing when and how the end will come. I confess I'm tiring of having my mother's life always in my hands. (She lives with us and has been since 2008.) I am myself under a cancer watch and headed for more surgery next week. I don't know when my end will occur, but I have a good idea that the cancer will take me before I get a version of the dementia my mother has. The idea of becoming more weak and experiencing pain is not good to think about, though, and so knowing that this will be my end is a bit hard to wrap my mind around. My mother doesn't really know what her dementia is doing to her. She is frustrated at times, but she is not in pain, and she is mostly very happy. I do my best to make sure she feels happy.

    If I had a choice, I'd hope that she might go quickly, by way of a heart attack, suddenly and without warning. I wonder if that sounds harsh. In truth, even though I'd like to know how long my caregiving is going to have to be, I don't think I'd really want to know. That might itself become too painful to think about.
     
  16. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    I have decided that after seeing how bad AZ is, if it was me I would rather go to Switzerland and have an assisted death - I certainly don't want my daughter's lasting memory of me to be a shell.
     
  17. Kazza72

    Kazza72 Registered User

    Feb 10, 2015
    202
    West London
    I tend to agree with you summerheather. I lost my dad to cancer, multiple myeloma to be precise, he died 4 years and 5 months after diagnosis. The last 15 months of his life were spent in hospital where he was confused, hallucinating and riddled with pathological fractures that were never going to heal, BUT there was an end in sight...my god my dad suffered and I prayed for him to let go as it killed to see him that way, but with mum and her AD, she's getting more confused, odd behaviour, destructive and filthy habits, but this will not only finish mum off slowly, but also likely to make me pretty ill too. I have every right to rant, rave and moan...I'm 42 and have no life. I can no longer go out as she's a nightmare if I leave her for too long, yes she's alone while I'm at work and wrecks the place every time without fail, but I guess weekends and evenings I can prevent damage so prevent more work for myself. There will be some out there who do their carers duties without complaint but I'm afraid I'm not one of them and will carry on grumbling and moaning and I most certainly won't feel guilty about it. Just fed up with people stating the obvious, if I hear "but she can't help it" one more time from any of my friends I will scream thanks for listening x


    Sent from my iPhone using Talking Point
     
  18. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    Fully agree with you, I'm sorry I can't be pious about it - I work and I care and when I'm not there or my husband isn't there, we have to lock the door I have no choice because we have to work.
     
  19. Kazza72

    Kazza72 Registered User

    Feb 10, 2015
    202
    West London
    #79 Kazza72, Mar 6, 2015
    Last edited: Mar 6, 2015
    I too have to lock the door, have been nagged and getting 'but what if....' Questions from SS. So let's see, yes, there could be the chance of an electrical fire...a small chance, but chance nonetheless. Leave the door unlocked....she could go out, get lost,knocked down by car/lorry, mugged, or let someone in to the property who may do a lot worse...and if we got robbed my insurance would be invalid....would SS cover the cost of damage and stolen property? More than likely not! I could moan forever lol


    Sent from my iPhone using Talking Point
     
  20. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,293
    SW London
    #80 Witzend, Mar 6, 2015
    Last edited: Mar 6, 2015
    I think you and your mother are very lucky if she is mostly very happy. So many people with dementia are never happy, no matter what we do or how hard we try. They are anxious or fretful or angry or agitated - so often about things that are all in their heads, or that they cannot even name. My mother was so often anxious and worried, and it made absolutely no difference how we tried to reassure her that there was nothing to worry about, we were taking care of everything for her. If I asked what she was worried about, the answer was invariably, 'I don't know.'

    Though I dare say at least some of it is down to personality. My mother was always a worrier, and tended to be pessimistic. If she didn't have anything concrete to worry about, she'd find something.
     

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