Helplessness and Disbelief

Discussion in 'I care for a person with dementia' started by Richie Taylor, Feb 20, 2016.

  1. Richie Taylor

    Richie Taylor Registered User

    Feb 20, 2016
    My Mum is 71yrs old and my Dad 74, in the last 18months my Mum and Dad have gone to hell and back and even now things just don't get any better. The hell all started when my Mum was diagnosed with breast cancer 18months back, thankfully the NHS were brilliant and got her in quickly to remove the tumour and all went well with the op, she would now face 6wks of radiotherapy as an outpatient, during the few days she was in hospital post surgery, there was one day in particular that we as a family remember vividly, on this day my Mother had what can only be described as a totally out of character experience, where she become totally hyper and was so vocal to everyone who she seen including total strangers, it was slightly embarrassing, to the family she seemed totally off the wall.
    Less than a week after being discharged from the hospital my Mum was rushed by ambulance to another hospital with intense stomach pain, where she was misdiagnosed with an infection and where a junior surgeon wanted to get her CAT scanned that day, he was overruled by a Consultant that this was not necessary. The following day my Mum was still in terrific pain, at 5pm that day the consultant decided a CAT scan was required, the result of this was that her bowel was perforated and Mum required urgent surgery as her life was now in danger. Mum was prepped and rushed into theatre for emergency surgery, the surgery took approximately 5-6hrs and whilst my Mum was in recovery we were told that if the perforation had not been diagnosed when it was she would have died. My Mum had part of her bowel removed and had to have colostomy bag to help with her recovery. During the three weeks she was in hospital recovering she was very unwell and there were times we thought she wouldn't make it. We all spent hours at the hospital but my Fathet spent every hour possible at my Mothers side, from 9am until at least 10pm every day she was in hospital, no matter how hard the family tried to get him to go home for rest there was no chance after all they had been married 54yrs and my Dad feared that if he went home something bad may happen to her, as there had already been some failings with her treatment and care. The 3wks absolutely brought both my Mam and My Dad to their knees.
    Once home it took a little time to recuperate and get used to the stoma and fitting of the bag, but with the help of the stoma nurse they got into a routine. Six weeks after being discharged from hospital the radiotherapy could finally begin, to be honest neither of them had fully recovered but the radiotherapy began, if my memory serves me right it was during this period that my Mum developed a hernia at the same site as the stoma, this brought along pain and discomfort as well as a few complications with the fitting of the colostomy bag but they both got through the radiotherapy and learnt to deal with the complications bright on by the hernia but needless to say events had took their toll on them both.
    Roughly 6-8months after the breast cancer operation we began to notice Mum was becoming forgetful, little things like couldn't get the right word or remember an event or a photo of her grandchild. On speaking to the GP and Consultants at different hospitals this was put down to post traumatic stress disorder and things would be better in 6monthd or so but they didn't and forgetfulness and remembering of events that happened only a few hours ago was becoming more and more obvious. My Mam attended a memory clinic where they did certain memory tests and scored something like 97%, a brain scan was done and the consultant explained that although there were a few abnormalities there was nothing conclusive. So we all hoped that the diagnosis of it being PTSD was correct and she would recover back to normal, although I think close family members including my Father had reservations.
    This behaviour continues throughout most of 2015 and was slowly getting worse, towards the end of 2015 events that happened a hour or so back weren't being remembered, we were having to remind Mam who certain people or places were who we were speaking about during conversations, this was mainly non family members, or we had to tell here where we lived, her son, daughter and grandchildren who she previously would know exactly where we lived. It was now starting to take a toll on my Dad, it was hurting him to see his childhood sweethearts memory disappearing in front of him, he wasn't sleeping, he had done everything for sometime now, so he had in effect become a full time carer, he'd stopped playing golf twice a week as he felt he couldn't leave her.
    In January of this year my mother seen the consultants regarding her memory again, on this occasion he diagnosed what we already knew but hoped otherwise, that my Mum had early onset Alzheimer's disease. It was heartbreaking for us all, we were frustrated, angry and afraid, as far as we were concerned she had gone through enough, in the last 18months and this was so cruel and to a nicer person you'd ever wished to meet, yes I am biased but it's true, my Mam wouldn't hurt a fly, she was always there for everyone, she'd give her last and she is the gentlest, nicest, loving, caring and compassionate, Mother, Wife, Nana, Great Grandmother, friend and person that you ever could meet, she doesn't deserve all of what's been thrown at her in the last 18months and neither does my Dad, who is the same in all ways as my Mum.
    What I haven't mentioned is that the stoma would have been reversed by now but the hernia is so big now that an operation now would not be a wise move, not now not ever.
    Over the last couple of weeks in February, she has got more forgetful and confused. Here is the really sad part and had brought my Father to his knees emotionally and physically, despite recognising all the family when we phone or call to see her, she is convinced my Father is another person who shouldn't be in the house, he's not her husband, he shouldn't sleep with her, she tells him not to tell anybody especially the kids he's in bed with her, once reminded and it really takes some effort on my fathers part and on our part she will accept that he's her husband but not long after she will forget again, it seems to be worse in the evening and in bed she keeps waking and asking who he is and he shouldn't be in her bed and to get out of the house. We seem to think she remembers the image of him when he was young but not now, so effectively there's two of him but the older one is forgotten very often on a daily basis. We are going to make sure my Dad gets back to his golf twice a week from this Monday, one of us will go sit with my mother for a few hours or maybe take her out for a run in the car. So that's good he will be able to see and talk with his mates it will give him a break but as for him not being able to sleep very well and being absolutely shattered and worn out, it is hard to know what to do so he's able to get some sleep. This feeling of helplessness is awful, what compounds it is if you mention the word Alzheimer's to my Mother or tell her she has Alzheimer's or is on medication to treat it, she will not accept it and gets really annoyed, we get told my memory is fine and it's getting better, so what to we do, how do we broach the subject. We want to talk about Alzheimer's Cafe's and Drop ins etc but we are afraid to upset her or making her uptight. So please if anyone can advise us on any issues that I have talked about please please let me know because the one thing none of us understand is when any of us children, daughter in laws or grandchildren visit we are recognised immediately and not forgotten even if it's been a few weeks since we spoke or visited. Yet my Fathet who has lived with my Mother day in day out for 54years, my Mother is forgetting who he is on an hourly basis and getting quite upset and frustrated that he won't leave and is sleeping with her. None of us understand this and I would have been far happier if it had been me that Mam can't remember, it would hurt don't get me wrong, but it hurts more that it's my Dad going through it day in day out.
    So that is my first post and the story of my Mam and Dad to this point. I apologise that it is such a long post and for any typing errors or poor grammar, it's hard when your doing this on an iPhone and to stubborn to put your glasses on. Any advice you can offer would be very welcome and any support you think I can get for them I would be most grateful.


  2. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    My word, what great control over an I phone!!!! and without specs too......brilliant.:D

    Hello and welcome to TP.You and your Mum and Dad have had an awful time over the past 2 years.
    I used the phrase colander brain with my Mum, ( she did accept that she had Dementia, she just didn't like the word ). I simply told her that she had developed a faulty wiring and that it meant that not everything stayed in now. I suspect that, like so many older people, the word Dementia was linked with Senility and that came with old age!!
    Keep posting, you'll learn a lot. You may find that you get more replies to general enquiries if you post threads in the " I care for..." section but I hope that you stay in touch wherever you post.
    Take care, Maureen.
  3. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    Hi and welcome to TP

    It is common the career became 'other' person however it hurts the career. Is she aggressive? Does your father has plenty of sleep?

    PWD (person with dementia) forget or denial her diagnosis: Choose battles, there are no need to remember a PWD that she has dementia.

    For your father golf: Can your mother accept that she is 'working' on a lunch club or day centre?

    I advise compassionate communication.
  4. Beate

    Beate Registered User

    May 21, 2014
    Wow, so many issues at once, where to begin.
    It's possible that the general anaesthetics your Mum had at the operations have something to do with her decline, but obviously she had to have them, but it's something to consider for possible future operations.

    I would say there is not much point in trying to talk to your Mum about her diagnosis and getting her to understand it. You can find lunch clubs, day centres or other get-togethers without mentioning the D word.

    Here is a link to an article about compassionate communication. It might be useful:

    I would go along with her beliefs, and maybe your Dad can leave the house for a minute then come back and reintroduce himself?

    Also, please get in touch with Alzheimer's Society, Age UK and the Carers Centre. They can do many different things, from emotional support to practical help like filling in forms with you, signposting to local clubs, sitting service or advocacy with authorities. You should look into applying for Attendance Allowance and getting wills and power of attorney sorted.

    You should also get in touch with Adult Social Services for a needs assessment and a carers assessment for your Dad. Mum could get a place at a day centre, sitting service or carers and Dad could get respite organised.

    Best of luck!
  5. jojop

    jojop Registered User

    Nov 9, 2013
    SE London
    Hi, I've been caring for my mum (and sister) for nearly 3 years now. Mum doesn't 'see' me as her daughter but always remembers my sister is her youngest.

    She will point out photos (of me) and tell me it is her oldest daughter. I have had to remove photos of me sister and self because she would ask how I long I knew my sister and how did we meet. I have learnt to deal with it now, I no longer try and remind her who I am but it still hurts.

    When I go out, when we have a sit in service mum knows who I am when I come back, but only for a few minutes then I become her carer, or her friend who looks after her.

    If your dad can go out and then return it may help ease her anxiety and for your dad too. It must be so hard and sad for your dad to go through this and emotional for you too.

    Sorry if none of this has helped.

    Best wishes, Jo
  6. Richie Taylor

    Richie Taylor Registered User

    Feb 20, 2016
    Thanks for the kind and informative responses

    Hi, thank you all so much for your kind words, information and personal experiences. It is a great crutch to know that there is somewhere I/we can turn to share experiences, woes and emotional thoughts and feelings.
    It is so hard at the moment to think of nothing else but Mam and Dad, throughout the day I cannot get it off my mind and when I'm trying to sleep, no matter how hard I try to switch my thoughts on to other things I need to concentrate on, it's always there.
    This is all pretty fresh to us as a family and to see my Mother disappearing in front of our very eyes is so difficult and we just feel so helpless.
    My Dad is back to his golf now, so that's great and he returned home yesterday with a relieved look on his face, he is finding it very hard, they are a couple who have always been full of love and romance, this has been the case since they were 14yrs of age, so for 60yrs now they have been an inspiration to others on how to live life, love one another and have a full, happy, loving relationship and marriage, I know they are not the only couple to have such a marriage but they are certainly becoming unique in this day and age.
    This is why it is so very difficult to come to terms with and also what has happened over 18months to my Mam is more than most have to deal with in a lifetime, in that respect it has also been so tough on my Dad and the immediate family.
    To know now that there are people like yourselves living with someone in the same situation as us and also people who are sufferers themselves, that I can come to for support and information is a great relief.

    With my Mother being told she has early onset Alzheimer's is hard but I believe it is not early onset but further advanced, so how am I able to find out what stage she is actually at?
    I have mentioned previously that she does not believe that my Dad is her husband but in fact someone that she has to keep secret from her actual husband and her family.
    Only last night Mam asked him as he ever been on a cruise, when actually they have been on many together, the last one 24months ago and even when my Father said he had been on many with her, she did not accept it and insisted that was her Husband and not him , he showed her the captains pictures they had taken on board, with they're arms around one another as to verify to her that it was indeed him and he was her Husband, but sadly 20-30mins later, she would again disagree that my Dad was her husband.
    Another example, my Wife and I took her out for the day, we were going down to the town where my Mother was born, despite telling her where we were going at the start of the 20mins journey where we were heading, Mam asked 4 or 5 times during the journey where we were going. Once at the shopping centre where I dropped my Wife and Mother at, I had to go and pop into a bank, I left them for 20-30mins but within 15mins I had a message from my Wife that Mam had become anxious about me and insisted they go straight to the coffee shop that I was to meet them at, without doing any shopping.
    We then went to my Son and his partners house and during the 15min journey I was asked on multiple occasions where we were heading. Once there despite my daughter in law (so to speak) who is 30wks pregnant seeing Mam two days previous was asked on multiple occasions how many weeks/months she was.
    When we came from there, she asked who was my Daughter in laws husband, this was my Son and her Grandson, who she sees regularly, at this point I had to breathe hard not to show that inside I was breaking my heart.
    It's the same with her medication she takes 3 to 4 times a day, giving her the medication we are told no I've already had that, so we then have to persuade her that she had not, then she takes the meds but then 20mins later Mam insists she needs to take her meds, then the persuasion starts again.
    I would really like to know if this is the behaviour of an early onset sufferer or an advanced sufferer, only because I would like to know where we are, so we can make preparation, such as power of attorney, benefits (Dad despite being able to claim benefits before this with her other illnesses, has been to proud to do so and sadly to worried of the stigma, which is ridiculous, I think I am getting there and he will make a claim, what they are entitled to I have no idea but will find out once he has agreed) and generally preparing ourselves emotionally, mentally and physically so that we can provide the best care and support for Mam and Dad that is ultimately possible.

    If any of you have any information, support or experiences that can help us then I would be so grateful and if I can offer help, support or advice of my experiences from here on in I would not hesitate to offer them.

    One of the posts mentioned anaesthetic as the cause of my Mams Alzheimer's, I would be grateful for any advice and reasoning behind this, not that I would dig up old ground now because as stated my Mam had to have these surgeries but for future information for both family and friends, I find it hard to believe if the correct research and evidence is there why aren't we told by the anaesthetist prior to surgery that this is a potential risk, it may be mentioned on the consent form but like infection etc this should be part of his/her discussion with the patient, especially if it is a certain bracket of people who are at greater risk.

    I have once again wrote a novel, I hope this doesn't cause anyone insomnia or have any issues that my first two posts have been novels. I would like to thank you all who replied to my post and for the help, support and kindness that you have provided to myself and us all as a family. THANK YOU
  7. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Hello Richie.
    I recognise most of the things you talk about. The thinking that her husband is not her real husband is called Capgras syndrome.
    BTW, early onset dementia doesnt mean that the dementia is in the early stages, it means that the dementia has started earlier in that persons life than is usual.
    I also thought Id give you a link to the stages of dementia - which is only a guide as every persons journey on the dementia pathway is different.
  8. Aisling

    Aisling Registered User

    Dec 5, 2015
    Hi Richie, what a horrific time for all of you? All I can say to you is that my husband doesn't know who I am most of the time now and explaining only stresses him more.he seems to be occasionally aware that there is someone in his life but doesn't know who she is most of the time. Sometimes he looks for "her". I have actually gone around the house with him looking for myself. He knows some people in moments. He can get very angry with me too. Just a suggestion could your Dad move into another room for a while?

    Sending you loads of support.


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