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  1. #1
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    End of Life- but Hopeful !

    Hello everyone,

    First to start off, my mother now (61) has FTD dementia, and is in hospital with pneumonia. generally these 2 factors mean the end.
    My father was told we could have a peg tube, but he presisted in feeding her orally and eventually she got pneumonia and now they will not even consider the PEG.

    myself i have worked in clinical trials and have a background in pharmacology and also stem cells. It has been really difficult to conduct research as i know most papers only publish the findings of what they want to or if it is a company publication they will not reveal much information.

    it really kills me, because i know if i had dementia my mother would find a cure with in a day.

    i wanted to explore enbrel - i have mentioned this to drs before but there is no evidence for it despite tobinicks website and i cant seem to find a reliable review for his suggested treatment.

    my mother - she was a keen learner, very spiritual, a keen reader, obsessed about her children, a real smother and worrier, but also wanted us - her kids to be strong and clever.

    so with such a bright mind how could she get dementia ?!

    I predict that when she is discharged from hospital it will be a matter of days.

    my father had persuaded the palliative team sent to our house that my mother was getting better and they stopped calling him.

    but now we will need to involve them again.

    for me i feel deceived by drs and people involved in my mothers case- if they told me before dementia + pneumonia = end that would have been better to know.


    Does anyone have an emergency last minute treatment suggestion that might save parts of her brain ?

    i still feel she has a internal monologue- but i also know when she looks at me she is feeling bad from inside and wants to go, i also feel that sometimes when we are doing something she wants to be involved.

    she cant talk, communicate in any way- eg blink or move arms, etc,,

    anyone have any suggestions?

  2. #2
    Volunteer Moderator Cat27's Avatar
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    Welcome to TP

    I'm so sorry your mum is so poorly. It's so hard to watch our loved ones fading.
    Volunteer Moderator & former carer.

    Try to be a rainbow in someone's cloud.... Maya Angelou.

  3. #3
    Volunteer Moderator Grannie G's Avatar
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    Hello ftdseeker

    It`s painful to read your post and to note the time you posted, showing you are obviously losing sleep through stress.

    With doctors, I think it is our responsibility to ask the questions rather than their responsibility to offer information , especially information of the kind you feel deprived of . This is because nothing is set in stone and doctors can be wrong.

    Many people do not want to know what might happen, they prefer to take one step at a time. I have seen this on Talking Point, sometimes too much information frightens people away.

    Your mother is so young. I`m sure your father has tried his best to do everything possible in her best interests.

    It might help you to phone the National Dementia Helpline where you can discuss your mother`s illness with those who have full knowledge of dementia .

    https://forum.alzheimers.org.uk/faq....urces_helpline

    You can contact our helpline by calling 0300 222 1122 or by email at helpline@alzheimers.org.uk.

    The helpline is usually open from 9am to 5pm Monday to Friday, and from 10am - 4pm at weekends. However, the service may be closed occasionally during these times for operational reasons.
    Take care.

    Sylvia

    Former Carer

    I cried because I had no shoes until I met a man who had no feet

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  4. #4
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    Quote Originally Posted by Cat27 View Post
    Welcome to TP

    I'm so sorry your mum is so poorly. It's so hard to watch our loved ones fading.
    she was strong at home, she wasnt eating much or drinking water- and only opened her bowls every 2 weeks.
    but still strong, could walk assisted , and showed interest in tv.

    the dr recommended going to hospital by ambulance.

    the and e and e put her on a iv drip, and took an x ray and said she has minor pnemonia. and gave her antibiotics.

    the next 3 days they did not allow her to eat and let the drip rehydrate her,
    they dd not want her to eat and rick more food going to the lungs.

    being in a bed for 3 days with no walking , she has gotten weaker and she has developed severe pneumonia

    this makes no sense to me - she only had minor symptoms, maybe she caught more infections in hospital.

    her necklace and pendant was also snatched from her neck.
    Nursing staff also did not listen to any of our requests as to how to keep her comfortable.
    the nurses were extremely rude, and pretend to be busy just to avoid talking to people.
    most cant speak English and a nurse from Philippines kept calling my mum "him" and "he"

    my mum was transferred to a elderly ward, where the woman next to her looks like has Tb or meningitis which i am sure is contributing to her pneumonia

    many nurses get angry when you speak to them. It is ridiculous !

    the hospital manager told me they do not have enough staff - so they need temp staff from any country.

    i would urge more uk born citerzerns to take up a job in the NHS otherwise it will become a multi national company.

    i also asked the nurses many times for my mother to be transfered to a side isolation room or to a ward where they have isolated rooms.
    is there a waiting list ?

    Nurse - "NO - she is not critical and the rooms are only used for patients with contagious infections. i have to go now ok.. "

    ME - "no she cant talk or mover her body or communicate in any way, in an isolation room i will be able to stay with her all day and night and feed her massage her, talk to her and help her recover"

    Nurse - "no i just told you it for critical patients"

    ME - "she has dementia and needs stimulation and full time support, she needs somone to massage her talk to her and help her eat, not just done on a routine.. she has her own routine, .. if you try to feed her she will be alsep, at home it takes 2 hours just to feed her pureed food"

    Nurse - "no only if your mum has a infection we can move her"

    as you can see they do not care for my mother- they do not want her to have a person by her side. the visiting hours are only from 2pm - 8 pm.

    this is ridiculous- a Dementia patient cant go from having a full time carer by her side for her every need to being bed bound and being looked after only when a nurse has time and even then just for the very basics.

    my mother must feel terrible going from having somone talk to her all day and night to being placed in a bed with no stimulation except for angry nurses - and wondering why someone stole her necklace.

    to be honest i am scared they is being abused n other ways- if her necklace can be stolen, what else are they doing to her?

    they dont allow me to stay with her,
    they dont give me blood test results when i ask
    they havent even shown me the x ray
    they keep telling me they will gove me an appointment with the dr- but when i ask for confirmation they do not have a reply.
    When i call the nurses station ask how my mother is they say she is alseep, and i say thats not normal, she is normally sleepy in the day and awake at night.
    - their phone lines were doen the other day, but i got though via switch board- i told them its terrible their direct lines are down - she interuppte dme and said "its NOT my fault sir" - I said "no i wasnt blaming you i was saying it it terrible"

    the nurses randomly try to show their ego. Not even the Drs in the ward do this.

  5. #5
    Registered User Jessbow's Avatar
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    So sorry. You sound so frustrasted.

    Is your mother in Hospital in the UK?

    The fact that they cannot move her doesn't mean they don't care. The NHS is very pushed, especially at the moment.

    How do you know her necklace was snatched from her neck? Was this witnessed? You say she can't talk, nor move.... My suggestion is that it was removed for her Xray and is either amongst her belongings or in the ward safe.
    Last edited by Jessbow; 12-01-2017 at 09:08 AM.

  6. #6
    Volunteer Moderator Cat27's Avatar
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    Pneumonia is a wicked illness. It took my dad in less than 4 weeks & he was eating & active before it.
    Volunteer Moderator & former carer.

    Try to be a rainbow in someone's cloud.... Maya Angelou.

  7. #7
    Registered User maryw's Avatar
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    Quote Originally Posted by ftdseeker View Post
    she was strong at home, she wasnt eating much or drinking water- and only opened her bowls every 2 weeks.
    but still strong, could walk assisted , and showed interest in tv.

    the dr recommended going to hospital by ambulance.

    the and e and e put her on a iv drip, and took an x ray and said she has minor pnemonia. and gave her antibiotics.

    the next 3 days they did not allow her to eat and let the drip rehydrate her,
    they dd not want her to eat and rick more food going to the lungs.

    being in a bed for 3 days with no walking , she has gotten weaker and she has developed severe pneumonia

    this makes no sense to me - she only had minor symptoms, maybe she caught more infections in hospital.

    her necklace and pendant was also snatched from her neck.
    Nursing staff also did not listen to any of our requests as to how to keep her comfortable.
    the nurses were extremely rude, and pretend to be busy just to avoid talking to people.
    most cant speak English and a nurse from Philippines kept calling my mum "him" and "he"

    my mum was transferred to a elderly ward, where the woman next to her looks like has Tb or meningitis which i am sure is contributing to her pneumonia

    many nurses get angry when you speak to them. It is ridiculous !

    the hospital manager told me they do not have enough staff - so they need temp staff from any country.

    i would urge more uk born citerzerns to take up a job in the NHS otherwise it will become a multi national company.

    i also asked the nurses many times for my mother to be transfered to a side isolation room or to a ward where they have isolated rooms.
    is there a waiting list ?

    Nurse - "NO - she is not critical and the rooms are only used for patients with contagious infections. i have to go now ok.. "

    ME - "no she cant talk or mover her body or communicate in any way, in an isolation room i will be able to stay with her all day and night and feed her massage her, talk to her and help her recover"

    Nurse - "no i just told you it for critical patients"

    ME - "she has dementia and needs stimulation and full time support, she needs somone to massage her talk to her and help her eat, not just done on a routine.. she has her own routine, .. if you try to feed her she will be alsep, at home it takes 2 hours just to feed her pureed food"

    Nurse - "no only if your mum has a infection we can move her"

    as you can see they do not care for my mother- they do not want her to have a person by her side. the visiting hours are only from 2pm - 8 pm.

    this is ridiculous- a Dementia patient cant go from having a full time carer by her side for her every need to being bed bound and being looked after only when a nurse has time and even then just for the very basics.

    my mother must feel terrible going from having somone talk to her all day and night to being placed in a bed with no stimulation except for angry nurses - and wondering why someone stole her necklace.

    to be honest i am scared they is being abused n other ways- if her necklace can be stolen, what else are they doing to her?

    they dont allow me to stay with her,
    they dont give me blood test results when i ask
    they havent even shown me the x ray
    they keep telling me they will gove me an appointment with the dr- but when i ask for confirmation they do not have a reply.
    When i call the nurses station ask how my mother is they say she is alseep, and i say thats not normal, she is normally sleepy in the day and awake at night.
    - their phone lines were doen the other day, but i got though via switch board- i told them its terrible their direct lines are down - she interuppte dme and said "its NOT my fault sir" - I said "no i wasnt blaming you i was saying it it terrible"

    the nurses randomly try to show their ego. Not even the Drs in the ward do this.
    Oh my goodness, almost a mirror image of what happened to my dear Mum 8 years ago.

    May I suggest you visit PALS in the hospital and get their intermediary support? Xx


    Sent from my iPhone using Talking Point

  8. #8
    Registered User cragmaid's Avatar
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    You are scared and bitter and frightened and angry and every other sort of emotion. I lost my Mum a couple of years ago however she was considerably older than your Mum.

    Firstly, the ward is not obliged to give you any information as your father will be considered Next of Kin, unless there is a LPA in place stating otherwise. Most wards will give out some information as a courtesy to family, but they do not have to.
    They will not be keeping your Mum in as a patient unless there is a true medical need for her to be there as they are desperately short of beds. The shortages of staff at this time of year will make the wards busy too.
    As busy people, being asked things that they do not necessarily have the answers for, can cause short tempers. On any ward on a given day there will be patients who look desperately ill, but despite the chaos, they will not put other patients at risk of catching a fatal disease.

    What I suggest you do, is for you and your father to make an appointment to speak to Mum's doctor together. Write a list of things down so that you can detail your worries. ...... and try to remain calm. Hospitals are anxious enough places without having people lose their tempers.

    You can ask to speak to the Hospital security people about Mum's Necklace, but remember that she may not recall wearing it and so may not be missing it.

    Sadly FTD is one of the nastier varients of Dementia, but as with them all, as yet there is no cure, no medicine to mend the mind.

    Your Mum may well recover yet, my Mum had several warnings of "end of life" before the end did arrive.

    Staying firm, but calm may gain you extra ground when dealing with a very overstretched NHS.
    Last edited by cragmaid; 12-01-2017 at 11:36 AM.
    Maureen.x.

    “You are braver than you believe, stronger than you seem, and smarter than you think." said Christopher Robin to Pooh. ( AA Milne)

  9. #9
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    Quote Originally Posted by ftdseeker View Post
    i would urge more uk born citerzerns to take up a job in the NHS otherwise it will become a multi national company
    I realise you are under a lot of stress and I know from personal experience that hospitals are not good places for people with dementia. Nevertheless, you must realise that this is an incredibly offensive comment. There is nothing wrong with multi-culturalism. Those foreign born doctors and nurses are what keep the NHS alive. It is not their fault that the NHS is on its knees with not enough beds and staff. They are doing their best. I am not a second-class citizen simply because I wasn't born here, and FYI, my English is excellent.

    I do think you should challenge things like visiting hours or not being consulted or being kept informed but don't blame the wrong people! It's most likely more to do with hospital management than with anything else. Understaffing will lead to nurses being incredibly busy and hence stressed and maybe short-tempered, having to prioritise when I'm sure they don't want to either.

    On another note, I know a few Philippinos, and they all get the he/she thing wrong frequently. It just seems to be their stumbling stone with the English language!
    Just keep swimming!

  10. #10
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    Quote Originally Posted by Beate View Post
    I realise you are under a lot of stress and I know from personal experience that hospitals are not good places for people with dementia. Nevertheless, you must realise that this is an incredibly offensive comment. There is nothing wrong with multi-culturalism. Those foreign born doctors and nurses are what keep the NHS alive. It is not their fault that the NHS is on its knees with not enough beds and staff. They are doing their best. I am not a second-class citizen simply because I wasn't born here, and FYI, my English is excellent.

    I do think you should challenge things like visiting hours or not being consulted or being kept informed but don't blame the wrong people! It's most likely more to do with hospital management than with anything else. Understaffing will lead to nurses being incredibly busy and hence stressed and maybe short-tempered, having to prioritise when I'm sure they don't want to either.

    On another note, I know a few Philippinos, and they all get the he/she thing wrong frequently. It just seems to be their stumbling stone with the English language!
    Well said Beate. We can't let our pain and upset make us take it out on hard pushed nurses.The nurse caring for my mum is not from the UK and she can call my mum King Kong if she likes. The important thing is that she cares, even though she is very overworked.

    It is the politicians wrecking the NHS, not the nurses. Thankfully in Scotland we have a gov that cares about the NHS so it isn't as bad as down south, but the nurses are still under masses of pressure.

  11. #11
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    I am constantly preoccupied with wondering why my very intelligent mother, spiritual too, with house of a thousand books, who did yoga daily (!), hardly drinking and was never fat, with no familial history of it, developed early onset. Just no idea.

  12. #12
    Registered User cragmaid's Avatar
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    Why Me? ... Why Not?

    I am constantly preoccupied with wondering why my very intelligent mother, spiritual too, with house of a thousand books, who did yoga daily (!), hardly drinking and was never fat, with no familial history of it, developed early onset. Just no idea.
    ....

    Give up wondering Amber, it will drive you barmy and gain you nothing. I went through the same issues when my younger sister developed Leukaemia at 36 and died at 39..... My constant question was what triggered the cells to turn evil? She never said " Why Me"

    If there was a logical trigger for these illnesses, we would all stay healthy, because we would avoid that trigger.
    Maureen.x.

    “You are braver than you believe, stronger than you seem, and smarter than you think." said Christopher Robin to Pooh. ( AA Milne)

  13. #13
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    To get an idea of just how stretched the NHS is watch a programme called The Hospital,broadcast on BBC 2 last Wednesday.I agreed with Beate,the NHS and most other public services would collapse without workers from abroad.I hate the fact that we seem to becoming so ready to blame 'foreigners'for everything that we are not happy with.

  14. #14
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    Quote Originally Posted by Amber_31 View Post
    I am constantly preoccupied with wondering why my very intelligent mother, spiritual too, with house of a thousand books, who did yoga daily (!), hardly drinking and was never fat, with no familial history of it, developed early onset. Just no idea.
    From all the media you get the idea that if you just eat well, exercise properly and keep your brain active then you wont get dementia.

    Well it isnt true
    Learning to sing in a cage

  15. #15
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    It is true that if we eat well, do not smoke, exercise and keep our minds and social life active and developing, we will have a better quality of life. And it is true that if we eat nothing but rubbish and get very obese and smoke like factory chimneys, we are likely, though not certain, to develop some awful illnesses. However, and this is the important and ignored thing, we cannot avoid becoming ill. Including dementia.

    People often ask why? when a previously healthy person gets cancer. Why not? We are all human and our systems fail.

    Having said all that, my MiL has recently died following a similar thing,..pneumonia following a fall. Our experience was very different, the hospital was what you would hope for. Maybe the difference was that she died within 4 days. So she was still in the Acute Medical Unit, high staff ratio, good communication. Very very sorry that's not what you are experiencing.

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