I'm so sorry to hear of everyone’s heartache

Discussion in 'End of life care' started by Sadsoul, Mar 27, 2019.

  1. Sadsoul

    Sadsoul New member

    Mar 27, 2019
    I lost my dad 5years ago. He had Alzheimer’s but died of cancer. Looking back I realise his Alzheimer’s was quite gentle. He was in a care home for the last 6 months of his life, simply because my mum couldn’t cope with him. He was a big man and became incontinent. When we visited him he thought we,d come to see him at work. He was still very much himself and going to see him was a pleasure. 6 months after we lost him my mum was diagnosed with Alzheimer’s and vascular dementia.
    Now she is bedridden, doubly incontinent, and has to have everything done for her. She weighs 5stone and is totally unaware of what’s going on around her. It’s hearbreaking to see. I am in tears after every visit. I,m starting to forget what she used to be like and have no recollection of our last real conversation together. There seems to be no end in site. She’s been classed as end of life since December 2017 and is still hanging on. I feel like I,m holding my breath. I hate this illness.
  2. hilaryd

    hilaryd Registered User

    May 28, 2017
    It is truly heartbreaking, @Sadsoul - and your two accounts of your parents' experiences really show how dementia can vary from person to person. I hope your mum is at least comfortable, and the only advice I can offer is to take care of yourself, try to remember better times, and keep coming to Talking Point for support from other people who really understand what you're going through. Wishing you well xxx
  3. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    East Midlands
    Big hugs @Sadsoul - my dad died 19 yrs ago & also had Alzheimer’s but his was not aggressive in terms of how his illness was with it. He also had Non Hodgsons Lymphoma the slow kind until it suddenly speeded up.
    My mum had mainly Vascular Dementia & Alzheimers & her personality deteriorated a lot. She was only officially diagnosed a few yrs ago but the likelihood is/was she had the disease for at least 7/8 yrs in total. Things only really became apparent in 2015 where I needed to intervene & get an assessment done & care started in 2016 with hrs increasing every couple of months.
    My mum then had to go into a care home last March after a crisis with a chest infection & seizures meant that she declined quite rapidly.
    My mum then entered hospital on the 8th March & declined rapidly again & passed yesterday. Obviously we knew it was expected as she was regarded as being on end of life care a week prior. It is a horrific illness no doubt about it.
  4. padmag

    padmag Registered User

    May 8, 2012
    Sorry to hear of your heartache, particularly now your Mum is suffering classed as end of life for such a long time. There are no words really and the best support is right here where we all understand and you can be free to say it as it is. My Mum is deteriorating rapidly and is now in care, she is 91. I also look after my partner 74 in his 8th year of Alzheimers. I could never have imagined the devastating effect this has on me, and I'm really really tired, very little sleep - sorry I have slipped into talking about me. You can only take one day at a time, I try to live in the moment with no future and at the moment my past memories are now such a blur. Do keep looking on here for others' experiences and support.it helps.
  5. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello @Sadsoul, welcome to the forum from me too.

    That must all be very tough for you, however, as others have said you have come to a place where people will understand.

    Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience. We will try to give the benefit of our experiences if you have a question and will always be happy if you just want to express feelings as we all travel the same bumpy road.
  6. lis66

    lis66 Registered User

    Aug 7, 2015
    Sorry Sadsoul sending you (((hugs))) yes this is definitely a horrendous heartbreaking illness which seems to last such a long time xx

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