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Seven years of hell - a cautionary tale?

Discussion in 'I care for a person with dementia' started by KMH, Mar 23, 2019.

  1. KMH

    KMH Registered User

    Mar 14, 2012
    46
    Hi there

    I have been coming here on and off - more off than on - for seven years and I can't believe it has been so long. I don't know whether anybody on here will remember, the posts have been quite sporadic and I hope that a lot of people have moved on from where they were but I am guessing that some of you will not have. My parents both have dementia (her Alzheimer's, him Vascular) and my dad has been very violent and aggressive for a long time. He also has cancer. They were separated for two years (many court appearances) when mum asked for a court order but at the end of that she had him back as she was not prepared to leave her home. I am fifty miles away and do not have siblings. Last time I posted, he had just put a care worker in hospital and I was desperate to know what to do. I had taken my mum to a care home placement emergency meeting but she had refused to stay.

    Well, a lot can change in a year. The day after I took my mum to the emergency meeting, I found a small lump in my groin and thought I had herniated myself pushing her in the wheelchair in heeled boots (I thought I was going to work that day so didn't dress for a wheelchair push). Well that lump grew and grew, very fast, and just over a month after my last post I was diagnosed with an aggressive soft tissue Sarcoma, which is a rare cancer that grows in connective tissue, and tends to recur. By early June when I had surgery, the tumour was 14cm, but it was well defined with 'clear margins' so I hope I have seen the last of Sarcoma, but it is a frightening cancer which often leads eventually to limb amputations.

    After my surgery I did not go to my mum and dad's for a couple of weeks, I could not drive so relied on lifts to make the fifty mile trip. I then had six weeks of daily radiotherapy in central London (again, a long way from where I live) from mid August to late September which left me completely exhausted.

    Throughout this time I was getting reports of the awful things that were happening from their carers and dad's CPN, who again tried to get my mum into placement which she refused. The GP ran tests on my dad at the CPN's instigation which eventually showed his cancer was becoming active again in his bowel and is now present in his lung. He was required to attend for tests which he, and the hospital staff, expected me to take him to. I could barely walk let alone push a wheelchair. He went on transport which left him completely furious. The result of the tests was a referral to the local hospice community team in November. His fury raged on, meanwhile his bowel problems created a huge stink as he refused to let anybody help him with managing his continence. He got progressively weaker with a Haemoglobin of 60 and had transfusions in October and January.

    Then at new year, my mum seems to have just given up. She stopped getting out of bed, became very sleepy, very thin and was only eating when spoon fed. I called 111 and the paramedic who attended told me she was 'in the end of life process' which was a huge shock. I never knew there was such a thing! Her heart was fine, sats were fine, she had no cancer, copd, anything. The GP's reaction was 'oh no, Mary's not palliative' until she saw her. I told the Hospice community nurse, who made a fast track referral for both of them to continuing health care funding, which was approved by mid January and by the end of January both were in a nursing home for palliative care.

    It is seventy miles from where I live.

    I begged for it to be closer but the one home that CHC approached was not prepared to take mum because they thought she would not survive the journey. So now I am adjusting to the 140 mile round trip, the staff have been hit by 'Hurricane George' which I know is hard for them ('Is your father always like this?'), meanwhile mum just lies in bed. She loves to know I am there but I can't make it anything like a often as I want (2x week and this midweek visit I started out, got 5 miles and said to myself 'you know, I just can't do this, I need a rest', turned around and came back).

    This disease (dementia) is a killer on every level. Please be aware that your loved one with dementia may expect things from you which are impossible, because that is the nature of their illness, and that the services may collude with them in that because the way they work is so fragmented, geared to respond to whatever 'crisis' presents itself. Please ladies and gents take good care of yourselves and beware GUILT because the ravages of this illness are NOT your fault or your responsibility to fix.
     
  2. Jojohove

    Jojohove New member

    Mar 19, 2018
    6
    Sending you love and hugs. I don't know what else to say but what you say about your health is one by best friend shares. She is convinced her cancer and ill health was in part due to her stress from her mother being diagnosed with Alzheimer's and other stresses in her life. It's just so hard. And whilst not an only child I don't have a great relationship with my brother and dad and that on it's own let alone my mum's Alzheimer's is causing me a great deal of stress leading to physical illnesses. My heart feels for you.
     
  3. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    394
    Sheffield
    What a very sad story, I hope you have some one in your life to help you with your illness. Wishing you good health and a big hug ❤️
     
  4. marionq

    marionq Registered User

    Apr 24, 2013
    5,861
    Female
    Scotland
    What a tough time you have had. I am in the seventh year of caring for my husband at home and have in the past felt very sorry for myself but your stresses top mine.

    Hope for better times for you in the near future.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,598
    Kent
    Hello @KMH

    I`ve read your post twice, finding most of it jaw-dropping.

    There is nothing I can say to make life better for you and by the sound of it, I believe you are well capable of making life as good for yourself as you possibly can.

    There is a limit to what can be expected from all carers, especially those with serious health issues of their own, those who are still young enough to need to be in full time employment and those with dependent young families.

    None of us are super people, we are just ordinary folk who are often expected to be super people.

    Please look after yourself. There are good people looking after your parents. Obviously you want to keep a check their needs are being met and you do feel the need to stay in contact but not at risk to your own health.

    When my mother was in a care home, I worked full time, didn`t drive and even though I was local, decided a weekly visit was as much as I could provide.
     
  6. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,522
    Ireland
    You really have done all you could for your parents, in circumstances that would have felled most people. But your first responsibility is to yourself and your own health. Your parents are being cared for. You need to care for yourself.
     
  7. KathrynAnne

    KathrynAnne Registered User

    Jun 6, 2018
    272
    Female
    South Yorkshire
    You have gone above and beyond. There is definitely no need for any guilt. Looking after one parent with dementia is too much to bear for some, never mind both parents and then your health problems on top! Look after yourself and give yourself a break xxx
     
  8. Rolypoly

    Rolypoly Registered User

    Jan 15, 2018
    2,319
    I second the sentiments of @LadyA. Please take care of yourself.
     
  9. lis66

    lis66 Registered User

    Aug 7, 2015
    261
    Hi kmh sending ((((hugs))) to you at this difficult time like you I am an only child and it is very hard take care of yourself x
     
  10. Karen22

    Karen22 Registered User

    Nov 3, 2012
    68
    I'm so sorry you are going through this. I'm going through something similar. Lots of stress caused by my father after my mum died four and a half years ago with Alzheimer's. Dad lying and going on holiday with another woman, then he succumbs to vascular dementia and I had to put him in a nursing home. I'm an only child with no other relatives to help and my own health is poor. It's been a nightmare over the years and is exhausting. It's still going on but dad is now in nursing home near me - his last home which he loved and where he lived for two year - couldn't cope with his diabetes and he was in and out of hospital. He has had to move 100 miles in an ambulance I arranged myself and settle in a new environment. I worry myself silly but have had to try to 'back off' somewhat as I'm having no life and doing myself no good nor my health. You have my sincere sympathies. Please look after yourself and don't feel guilty. Easier said than done, at times!
    Karen
     
  11. myss

    myss Registered User

    Jan 14, 2018
    367
    Wow @KMH I was supposed to be going to bed but read your post, and I'm now like :eek::eek:

    Sending you best wishes ((KMH)). Your point about your own health and welfare is so right and is one I champion to my own family while we take turns looking after my dad.
     
  12. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    2,007
    Female
    East Midlands
    @KMH - Dementia is hard. The end stage with my mum is the hardest thing I have ever had to do. I’m also an only child & it is all on me.
    My mum was always a hard & critical person. Dementia made her worse & she used to make ridiculous demands on me.
    Your own health is paramount & you need space & a break from the stress because it is so stressful.
    You want to keep your loved ones safe, you want to know they are looked after.
    I couldn’t look after my mum in her home or mine & I wouldn’t have wanted to because it would have got ugly very quickly.

    When her health deteriorated last year after a number of seizures, she ended up going into a care home.
    I ended up moving house again so I was closer to her ( moved twice in 1 year) & close to her former house so I could keep an eye on it. I didn’t visit her at the care home every day, I wanted her to get used to be there, get in a routine & eventually she did. We visited once or twice a week even though I was pretty local.

    However the previous move nearly pushed me to the brink as it was so stressful & then I was getting phone calls about her nearly every day. So yes the last 4 years have been very stressful. My heart goes out to you.
     
  13. KMH

    KMH Registered User

    Mar 14, 2012
    46
    Thank you Marion Q. I think caring for a partner is on a whole different level, personally. I am pretty sure it would be harder to access outside support? My husband is lovely, he is ten years older than me and until this year I had assumed one day it would be me caring for him. He got a big brain injury in the 1970s riding motorbikes and he is still riding them. Now I don't know, none of us know what lies in the future. I do know loving someone with dementia is a hard path and one you are walking so you have my utmost admiration and respect.
     
  14. KMH

    KMH Registered User

    Mar 14, 2012
    46
    my mum's Alzheimer's is causing me a great deal of stress leading to physical illnesses. [/QUOTE]

    Please take care of yourself JoJo. Maybe it suits brother and dad to leave you to 'get on with it', I don't know. I know from experience that an 'only child' with two parents with dementia faces huge challenges, but also that siblings don't always choose to help.
     
  15. KMH

    KMH Registered User

    Mar 14, 2012
    46
    None of us are super people, we are just ordinary folk who are often expected to be super people.

    Thank you Grannie G. I am trying to give myself that permission, as I still have a life to live and am valuing it more now. Something which intrigues me is where do those expectations come from? From our loved ones, who expect to be supported in living the life they always have without being able to manage any of the responsibilities of living that life? From the services, who often seem to look for the cheapest and most convenient solution to themselves?

    Or from within ourselves as carers?
     
  16. KMH

    KMH Registered User

    Mar 14, 2012
    46
    Please look after yourself and don't feel guilty. Easier said than done, at times!
    Karen[/QUOTE]

    Right back atcha, @Karen22. Sounds like you have done an amazing job for your Dad and you managed to get him living near you. Please prioritise your own health.
     
  17. KMH

    KMH Registered User

    Mar 14, 2012
    46
    However the previous move nearly pushed me to the brink as it was so stressful & then I was getting phone calls about her nearly every day. So yes the last 4 years have been very stressful. My heart goes out to you.[/QUOTE]

    Thank you @Kikki21. Yes, the best thing about my situation now is the phone calls have stopped. 'The stairlift is broken, your dad won't let the carer in, he's flushed all the medication down the toilet, he sent the ambulance away, your mum has bruising, your mum says she wants him taken away' etc etc. It had been many years.

    My heart goes out to you in this 'end stage', especially as your mum has never been very supportive of you by the sounds of it. So many things make this the hardest road that many travel in their lives I think. I can honestly say that being treated for an aggressive cancer is nothing like as stressful as an aggressive, critical parent with dementia.
     
  18. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    2,007
    Female
    East Midlands
    Thank you @Kikki21. Yes, the best thing about my situation now is the phone calls have stopped. 'The stairlift is broken, your dad won't let the carer in, he's flushed all the medication down the toilet, he sent the ambulance away, your mum has bruising, your mum says she wants him taken away' etc etc. It had been many years.

    My heart goes out to you in this 'end stage', especially as your mum has never been very supportive of you by the sounds of it. So many things make this the hardest road that many travel in their lives I think. I can honestly say that being treated for an aggressive cancer is nothing like as stressful as an aggressive, critical parent with dementia.[/QUOTE]

    At one point my mum basically said that she only had me in order for me to look after her!

    That is not the way it goes. Honestly, a lot of my oldest friends are still shocked to this day how she treated me.
    One friend recounted that she came to pick me up to go out ( her mum was taxi driver) when we were young & my mum made me clean the kitchen floor dressed in my going out clothes before I went out! She was gobsmacked!
     
  19. KMH

    KMH Registered User

    Mar 14, 2012
    46
    At one point my mum basically said that she only had me in order for me to look after her!

    So sorry, @Kikki21. It can be difficult for people to understand what it is like if they have never encountered a parent like this, or if they assume it is a personality change due to dementia. Having an abusive parent with dementia can be like re-living a difficult childhood all over again, but with added craziness.
     
  20. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    2,007
    Female
    East Midlands
    This was way before my mum had a dementia diagnosis.
    From what I have gathered from my cousin G & from I have seen, I think my mum had an undiagnosed personality disorder since she was a child.
    She would literally fall out at some stage with everyone she knew.
    Her relationship with my dad was awful. At the age of 14, I turned round to my mum & said why are both of you together? Surely it is time you got a divorce!
    My mum was only little but oh my god she was hugely confrontational for someone so small.

    She caused some huge bust ups in her own family. It’s so sad.
     

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