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. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    First we were worried about doing the 'right' thing, you know when the 'experts' tell you, 'no you can't lock the door, that could be classed as kidnapping' But you know, since I've realised that actually, you get no help with AZ, you are basically left to 'get on with it' I tend to do whatever suits us as a family. Not perfect, but if they want perfect they need to change their policies and actually help people like they would more likely do if my Mum had cancer.
     
  2. snorkmaiden

    snorkmaiden Registered User

    Mar 8, 2014
    26
    Surrey
    My first post so apologies if I've done it wrong but I just wanted to say that I take some comfort from the fact that my Dad has AD. In January 2013 he had to have a triple heart bypass at the age of 84 with the inherent risk of already being registered disabled due to severe asthma. It didn't go so well. I gave up my job and my home to move into his bungalow to take care of him, there's no-one else. In October 2013 he was diagnosed with AD and then in April 2014 he was diagnosed with terminal bowel cancer. I take comfort in the fact that he doesn't realise how poorly he really is and what effect his illnesses have on my (non) life, he would be devastated if he understood. I hope his failing heart packs up while he's asleep one night but, then again, I dread every morning in case it has! My love to all xxx
     
  3. missmarple

    missmarple Registered User

    Jan 14, 2013
    204
    Kazza- social services let me know via dad's carers that the place was dirty. Yes SS, that's because he has done no housework in say 10 years, and was an epic hoarder before getting AD. He lives with my brother who has mental illness, i visit fortnightly (so a much lighter load than many on TP). Over the last 5 years I have cleared about 2 skips worth of junk - only silver lining of his AD, he doesn't realise what i am doing. Before the AD,he would have gone bananas if i'd tried removing stuff. I have cleaned, tidied, done trips to dump there more than for my own home. I let SS services know they are welcome to send a cleaner round. Otherwise not to expect any miracles.
     
  4. Kazza72

    Kazza72 Registered User

    Feb 10, 2015
    202
    West London
    I feel sometimes that SS don't actually think before they open their gobs our SW rings me hounding me at work wanting to arrange visits, wanting me to sod forms, suggesting handrails for this that and the other...oh yes I have endless holiday entitlement at work and I just love to spend it waiting for people to deliver stuff, install it, meet with SS for absolutely no reason other than to tick the boxes...it's a painfully slow process, Time consuming and often ineffective. It's awful because I have turned into a right grump...life should be enjoyed but I'm not enjoying it, that's a bad way to be, I should be grateful as I have my health and one day will get my life back but can't help being selfish at the mo


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  5. Padraig

    Padraig Registered User

    Dec 10, 2009
    1,039
    Hereford
    I'd love to have some of the support that's mentioned on here with regards to cancer. I've posted already posted that I Emailed for help and information about living without a stomach (complete removal due to cancer). I'm still waiting after more than a week later.

    Several times a day and at nights I suddenly suffer with terrible pains and I'm just asking for advice from the Macmillan nurses. Could it be that when we reach a certain age, the thinking is: why wast resources? Should I get Dementia I guess I'll be lucky as I'm make sure I won't hang around too long and be a such a heavy burden to everyone.
     
  6. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    I get what you're saying. One of my mum's appointments at the Memory clinic was rebooked by them 4 times - 4 times! Each time I had to book the time off and then go and see my Manager. Everything in my household revolves around my Mum, everything, and I try to do everything for her, so yeah, I think I'm allowed to ***** and moan to help cope with it, whilst my own life is slipping away to look after a shell that is nothing like my mum.
     
  7. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    I would also like to say that I'm fiercely protective of my Mum and like many here have probably made lots of sacrifices to still care for her in our home. It doesn't mean that my heart doesn't break and I'm not allowed to express my rage at the lack of help and support we get because her terminal illness is AD.
     
  8. Kazza72

    Kazza72 Registered User

    Feb 10, 2015
    202
    West London
    You're human....you're allowed to feel frustrated and angry and upset...you life is not your own. There is nowhere near enough support for carers, there's also not enough awareness either, which is why a lot of carers end up being deserted by friends and family, that's my opinion anyhow...and like you, I'll also do whatever it takes to protect my mum, I just would like a night away, or even a night out without worrying that she'll get out of bed and fall....I'm in bed now, on a Saturday night, what a boring life I have but I'm that tired I'm fighting to keep my eyes open


    Sent from my iPhone using Talking Point
     
  9. stu100

    stu100 Registered User

    Feb 4, 2015
    70
    Birmingham
    Also with cancer people understand and r willing to help with Dementia no one wants to know and there is no understanding or help
     
  10. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,125
    eastern USA
    I'm sorry to hear about your pain, Padraig. I think you *are* on to something. I feel that once we reach a certain age, physicians are less interested in us. I think you are right, too, about the reason: the resources and their time are limited, and they are encouraged by insurance companies not to provide all the services that might be provided.

    I so sorry you are in pain. You are such a remarkable human being, Padraig.
     
  11. Padraig

    Padraig Registered User

    Dec 10, 2009
    1,039
    Hereford
    Thank you CJ,
    I've had no too bad a night, so I went for my morning run as usual. I can't begin to imagine what it's like to care for a parent or grandparent. Never had them in my life. You only get to know and understand what life is like in your eighties when you reach that stage of life.

    Often spouses and partners have a big advantage when it come to caring. We are mostly retired by then, where as off-springs have a job and family to raise.

    In my case I knew my wife the age of 18. Also, I knew and understood the period and time we grew up in. It was another world then: the war years, rationing, no phones etc etc. Who wants to hear old folk talk about the past? However if one listens once in a while they just might begin to understand their 'ramblings', and make some sense of them. When Dementia hits they're back in those days.

    It's true that you'll find friends and some family disappear with the advent of Dementia. It's a long tough race and if you attempt it on your own as I did you tend to be forgotten when it's over. With nine grandchildren and eleven great grandchildren, some new arrivals I've yet to meet, most I haven't seen in over a year.
    Thank God for Daughters, she's the one person that's always reliable with regular visits. The rest are getting on with their lives and I'm pleased for them. When things get tough they know I'll always be here to help.
    I'm better off than many with enough food, a warm house (a bit big I grant with four bedrooms) and have control of my life.
     
  12. Chaucer 1931

    Chaucer 1931 Registered User

    Mar 30, 2014
    226
    I get what you're saying. One of my mum's appointments at the Memory clinic was rebooked by them 4 times - 4 times! Each time I had to book the time off and then go and see my Manager. Everything in my household revolves around my Mum, everything, and I try to do everything for her, so yeah, I think I'm allowed to ***** and moan to help cope with it, whilst my own life is slipping away to look after a shell that is nothing like my mum.


    This is my thoughts exactly SummerHeather! If we can't be allowed to say and express what we really feel as carers and family,then who would ever do it for us.
    I'm not playing martyrs for no one and I don't think I'm "privileged",as one person put it,to be sharing the so called journey with my mum.
    I know if she had her faculties,she would have begged me to put her out of her misery before now,as she's seen her own mum and sisters go through it. Screw it,I can see why asylums existed and why people were put in there! -for families to save there own sanity!
     
  13. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    I find it shocking that everything about this awful cruel terminal disease is based on money, money, money. The authorities don't want to pay for anything - any help you get from them is based on the £. I cannot think of any other terminal illness that is based on the same - can you imagine the uproar? As far as I'm concerned the government has written off everyone that has this disease and wants to deal with them as little as possible and as cheap as possible.

    AD should be screaming at every government from the rooftops, this shouldn't be accepted.
     
  14. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    I know exactly where you're coming from. I was helped by my brother telling me to take a step back or I'd become a martyr to a man who when he had his full faculties refused to make my life easier by moving closer to me, as I asked. And when I said 'What happens if you develop dementia?' laughed and said, 'Ooh, let's hope it never comes to that.' No wonder we get angry. Either the person we're caring for was independent and kind and would never have wanted to put us through this, or they were difficult and stubborn and selfish and so we ask why we should have to do this? (Or in my father's case, a bit of both!)
     
  15. Chaucer 1931

    Chaucer 1931 Registered User

    Mar 30, 2014
    226
    I think if anyone didn't have feelings like this then they are either kidding themselves or they have that much support 24 hrs a day and money is no object,and they are blinkered or leading a fantastic lifestyle.
    Don't get me wrong,I love my mum but at the same time,this is not what I wanted for her,for me or my two daughters. The people in government often have privileged life's and therefore can make decisions about public services and people without and empathy. They aren't or never have been in touch with the real world and therefore make their decisions based on what is hot topics for the voters around election time.
    How many MP,s would take AD to parliament,prime ministers question time?
    It would be different if they all have to walk in our shoes that is for sure!

    And big b****y round of applause for everyone one of us carers on here,for saying it like it is!
     
  16. flowerpetals

    flowerpetals Registered User

    Mar 6, 2015
    30
    Hi there, I'm new to this forum so please bear with me for the moment and sorry for butting in like this. I totally agree with College Girl, to be diagnosed with terminal cancer is just devastating. I was there when my dear father was told he was going to die, I was there when he choked and drown to his death, along with a heart attack. He spent 16 weeks in bed, on morphine and oxygen plus a further 3 weeks in hospital with 2 bouts of pneumonia. My Dad, once a big and strong man reduced to a skeleton of himself, the cancer slowly eating him away; the pain, choking, incontinence, diarrhoea and vomiting. That cancer made sure he was going to die. I have never been so scared and heartbroken in my life. Even just watching his appetite disappearing was heart breaking. It's been exactly 2 years since my father died and now I am looking after my Mum who has been diagnosed with both Alzheimers and Crohns disease very recently.

    Yesterday I read some one write (on FB) "I'd rather have cancer than Alzheimers". I'd rather have none of the above because they are equally devastating diseases. I understand that the time frame is shorter but knowing that you have little time left is so frightening, especially when ypur loved one depends on you for everything. Equally knowing that my Mum is going to die slowly and in such a devastating manner is just utterly heartbreaking.

    However, sometimes when I hear of some one "beating" cancer, it does upset me a little. I know that if my Dad was given the chance to "fight" it, then he would have. He was sent home on December 19, no care plan to die. It wpuld be fantastic if patients with Alzheimers were given the chance to "fight it" I think that's the frustrating part of this disease, there is no cure and although we're at the beginning stage, my Mum needs a lot of care and attention already. It is all about Mum's needs, I keep thinking maybe she hasn't really got it when we have a good day, then Alzheimers rears it's head. I envy those who don't have worries like this, those who can plan trips and outings without wondering if my Mum is going to cope ok on her own.

    It's my first posting here and I don't mean any malice to anyone. I wish all of you all the best in these difficult days we encounter.
     
  17. Kazza72

    Kazza72 Registered User

    Feb 10, 2015
    202
    West London
    Hi flowerpetals, sorry you find yourself in this position.... My mum was diagnosed almost 5 years ago, and it's killing me. Most people including family have turned their backs on us and my life consists of getting up, shower, go to work, have a stressful day at work, come home to mum who has more than likely trashed the living room, often pooped on the bathroom floor, the smell in our home is often unbearable, givingum has dinner, giving her meds, getting her to go to bed and then once that's done, I have tons of laundry to get through. Weekends are spent cleaning, and shopping and boy would I love a nap but I can't get a nap, mum does to leave me alone and if I ignore her calling out my name,then she starts banging and crashing things about...the stress I'm going through will eventually make me ill.. I did not have anywhere near the same amount of stress when my dad was dying from cancer, immense sadness yes, but not stress, and that involved flying back and forth to Dublin...oh and friends and family were a great support, they're nowhere to be seen now. This is just my experience,...I'm not suggesting in any way that dementia is worse or easier than cancer...both illnesses are equally as vicious and relentless.



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  18. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    In fact, what this thread is suggesting is NOT that dementia is worse than cancer - there is no attempt to set a grading system for tragedy - but that caring for a dementia sufferer is often worse for the family member who has stepped up to do the job: she or he is sometimes alone, unthanked, often the target of demented paranoia and always stressed. And the mourning process is prolonged.
    I am so grateful to all of you who have expressed your honest difficulties with this.
     
  19. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,125
    eastern USA
    I'm glad you had a good night, Padraig, and you even got a run in. As I said, you are amazing.

    My sisters have essentially abandoned me and left me to take care of my mother, which includes not just her wellbeing in the home but doctors' visits, her finances, the whole nine yards. When my husband suggested to one sister - who actually asked how could she help - that she take a look at the calendar and come and take my mother to all the appointments, she immediately balked, said how busy she was, and that was that. I agree with you: it is somehow easy to forget those who are older and suffering ailments of any kind. I don't really understand it. How can you not want to see your mother, in whatever condition she is in, and help your sister cope with her own difficulties?
     
  20. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,125
    eastern USA
    RedLou - how eloquent: there is no attempt to set a grading system for tragedy. You are so right.
     

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