1. rosie1234

    rosie1234 Registered User

    Jun 23, 2015
    3
    My Granddad has become gradually more in need of help over the past 10 years. His physical mobility has deteriorated rapidly in the past year. In March he fell and went to hospital for two weeks (as they had to wait for tests to be done). He currently lives alone however since returning from hospital has had meals delivered to his dinner table and "carers" come twice a day in the morning and evening (we installed a key safe for them to enter). He has not been officially diagnosed with dementia however today we went to the Physiological Medicine department at hospital to have a follow-up after being discharged from hospital. The Doctor there said that she can tell he has senile dementia however due to him being on medication for epilepsy he cannot be prescribed with medication to help with dementia, so she did not carry out a dementia test as it would be a waste of time and stress.
    The issue we are having is that my Mum is getting increasingly stressed and frequently gets very upset about the situation but I do not know what to do. He constantly calls the house with tiny issues and when we go to his house as he has become incontinent the house and himself smell of urine and faeces. The lack of care from the carers makes her very stressed, for example he has only had one shower since returning from hospital and we consistently find his bed made but the sheets are covered in faeces.
    We want him to go into a care home however he does not want to. We find conversations with him about care to be very difficult as he has always been very stubborn, so we don't actually know why exactly he is opposed to going into a home. I have done some reading and all I can seem to gleam from it is that if he is able to make his own decisions (which the hospital deemed him to be able to do upon leaving) then we can't force him to go into a home if he is unwilling. My Mum is reaching her breaking point and I really want to sort something out and get him into a home for her however I don't know who to contact or what to do.
    I may have missed some details out so I may post below this with anything that comes to mine. I'm sorry if this post is rather jumbled as I'm just trying to get everything down but if anyone has any advice for me that would be fantastic.
     
  2. florabunda

    florabunda Registered User

    Nov 13, 2014
    24
    Hi Rosie
    If your grandfather is getting carers and meals, he must have a care manager. That would be the first person you should contact, your local authority will have the number. I hope you and your mum get some help soon.
     
  3. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,475
    Radcliffe on Trent
    It's not clear who organised the carers but it certainly sounds like a review is needed to sort a care plan and carer input based on the needs he now has. Ask your local Social Services (or care manger if there is one) for an urgent re-assessment. Use the terms 'vulnerable person' who is 'at risk'.

    Your local GP should also be able to organise a referral to the Incontinence Service who can advise on how best to manage that aspect of his difficulties. Again stress that this is urgent as your Grandad has no awareness of this problem and is unable to manage it. It is also possible that there is some other medical problem of which incontinence is a symptom and which could be treated.

    If he is not able to recognise or accept help with incontinence in particular I would see that as evidence of lack of capacity to make decisions, so again I would seek advice from GP.
     
  4. Sad Misty

    Sad Misty Registered User

    Jun 8, 2015
    31
    #4 Sad Misty, Jun 23, 2015
    Last edited: Jun 23, 2015
    Im so sorry to read this dear

    Now as im not familiar with sed country's laws and how things work in you're country i can only say what i would have done

    first i would go back to the docs that states that you're grandad is still perfectly capable of making his own decisions (something thats to me based on what you are telling us is complete noncence and protest and ask fore a new review and second opinion as i must say i cant see any other reason fore there diagnose other then money iccues ) and as the doctor sed there is a clear sign of dementia so there you have you're diagnose that they whont to have before they can move on so they shouldent be able to back down this fast

    then i would also contact you're local social services and ask fore a meeting fore you and you're mum were she makes clear that she can no longer cope with this and needs help and more support now . And dont back down stand you're ground that this is not a ideal or indeed not even remotely dignified as a life fore you're father :(

    The incontinence issue i just by it self a reason fore them to get more help (not to mention you're mums stress about this situation ) and also try to see if there is somecind of other medical problems that cause this. And as been stated above get a new evaluation and a care plan fore him

    I felt as lost as you seams to feel at the beginning with my mum dear but there is help to be found dear its just a matter of finding it and to learn you're rights and then stand up fore you're self and you're caretaker and demand to get sed help against the society that sadly al to often feel its cheaper to leave it to us relatives :( (just to clarify we have been lucky to get al the support we need over here fore mum fore which im ever so humble and grateful fore )

    I do hope things will soon get better fore you're grandfather and you're mum dear :(
     
  5. florabunda

    florabunda Registered User

    Nov 13, 2014
    24
    In my area it's the District nurses who assess and refer to the Incontinence Service, but it takes weeks before they come out to see you. Ask the receptionist at the surgery whether you should contact the doctor or the nurses, it might save some time.
     
  6. Demonica66

    Demonica66 Registered User

    Oct 23, 2014
    53
    Hi Rosie1234; your poor Mum. How lucky she is to have you though! It appears at the moment, that authorities think your Grandad has the mental capacity to make decisions about his care. However, the fact that he is doubly incontinent without realising it (I am assuming, without a physical reason) does indicate that further investigations into your Grandad's condition should be made.

    He sounds extremely vulnerable but your Mum sounds at the end of her tether. I wonder if you could take photographic evidence of your Grandad's inability to cope? I know it will be very difficult, but your Mum maybe needs to take a step back and let official agencies take the helm. It could be that she is a 'victim of her own success' and because she does everything she can to help your Grandad, it might mask many problems.

    As hard as it sounds, sometimes retreat is the kindest thing.as at present, no one is benefitting from the current situation. Your council should have a safeguarding team. They should be involved. Social services should also be acting in your Grandad's best interest too. They need to be forced into extra action by being told that your Mum is not able to continue providing the same level of support as previously. It's a really difficult position to be in but your Mum needs breathing space. Good luck! D x


    Sent from my iPhone using Talking Point
     
  7. Emily M

    Emily M Registered User

    Jan 20, 2015
    178
    Get a diagnosis

    Unfortunately a lot of what you say here is all too common. It is extremely difficult for carers who are living with the person to cope with these incontinent and hygiene problems, let alone for a relative who does not live in.

    I would say it is necessary to get a diagnosis. GPs are often very willing to discuss issues with relatives if dementia / Alzheimer’s is suspected. Have a word with the GP beforehand. If he won’t go to an appointment then a home visit from the GP should be arranged. Once the GP suspects a problem the Older People’s Mental Health Team will get involved and confirm the diagnosis. They also do home visits. If he has carers then who arranged this? Was it through Social Services? Does he have an allocated Social Worker and do you know their name? We found my mum's Social Worker and the Older People's Mental Health Team extremely helpful with arranging all the different services, but unfortunately things happen slowly.

    Would he be willing to go to a Day Care Centre? This may be a way of encouraging him to eventually accept a short spell of Respite in a home with the hope of extending it to full time residential care.

    I hope this is helpful. It is very difficult to get someone to go into care against their will and for the authorities to intervene however unacceptable the conditions the person is living in. I think he would have to be considered of being likely to be an extreme risk to himself or others to be taken in against his will. It is a very slow process and sometimes things have to reach crisis point before anything happens.

    I hope that you manage to sort things out.

    EM
     
  8. rosie1234

    rosie1234 Registered User

    Jun 23, 2015
    3
    Thank you to everyone who's responded, I'll reply to you all here

    My Mum set up the carers so I suppose she will have to call. I don't want to do anything without my mother's permission but I do want to send an email about how the level of care they are providing is unsatisfactory.

    I should have stated that my Mum organised the carers so I don't know how much Social Services can have to do with it. In my opinion his incontinence has only started because before hospital he used to sometimes not make it to the toilet in time as he has mobility problems, and obviously at hospital they would just let him defecate in his clothing and clean him up. So since hospital I believe he has simply stopped bothering to go to the toilet. I do think you're right about the ability to make decisions being impaired as he is unable to recognise that hygiene levels are appalling, but I'm confused as this was an issue while he was at hospital so why would they class him as able to make decisions at that point in time?

    I think I will try to contact someone to review his ability to make decisions, the problem here is that I don't know who to contact as it's the hospital that made this decision and I can't just contact "the hospital", I don't know which doctor is which as there are so many different people involved with him. I may try to contact his GP. Thank you for your kind words.

    Hi again. I forgot to mention he has a convene (I think that's the brand name, the thing that collects urine in a bag on the leg), however he still absolutely reeks of urine, we think this is due to the penis attachment being too large and leaking onto his clothes. He has never had any help with bowel movement incontinence. He has met with the district nurse however since my Mum can only visit once a week and then whenever is vital when the district nurse visited him we think (from what he has tried to tell us) that they are changing the size of the bag so he doesn't need to empty is as often, which is not what we wanted at all. Sorry this was a bit of a long message and didn't really reply to your post...

    I may try to take photographic evidence without telling my Mum however the first thing she does when we arrive at his house is strip the bed if it is soiled and bin any used incontinence pants. I feel that the photographs may not help as it doesn't visually seem that bad... I will try to contact social services though. Thank you for saying she's lucky to have me, I'm only doing what I can as I hate to see my Mum like this.

    I have never heard of a day care centre, are they usually within residential care homes? This option theoretically sounds like a good idea however I don't know how this would logistically work as he has no way of travelling other than my Mum (she can only visit once a week for a couple of hours) and I don't think even the nicest taxi driver would be willing to help him from his living room to the car as it can take him up to 15 minutes.


    Thank you all so much for all your advice, I will talk to my Mum about this in the next few days.
     
  9. Sad Misty

    Sad Misty Registered User

    Jun 8, 2015
    31
    #9 Sad Misty, Jun 25, 2015
    Last edited: Jun 25, 2015
    I think this would be a good step Rosie. I understand , perhaps you're mum would know ? Or you as a "relative " should have the right to get to know which doctor he sees and so on and basically (again according to the law of you're country ) the front desk should easily be able to find which doctor you're grandad have seen and so on . The main thing here is dont give up ,dont accept them stalling and last be STRONG dear fore you as well as you`re mum and you're grandad (believe me i know its not easy nearly broke me as well until i got " additional" support we got recently (started this last weekend ) as i did most al ground work my self just to help mum ) but let me tell you this advice i my self gotten in this matter DONT forget about taking care of you're self Rosie and NEVER feel that you're a bad relative just because you ask fore extra support . You're very welkome Rosie and do please let us know how things progress ? and i do wish you from the deep of my heart good luck in you're future quest fore helping you're family

    Again i can only tell how it is here but my mum is in a GOOD day care center specially fore diagnose dementia caretakers still living at home 4 days a week meals included as well as some shopping of clothes , washing , and also help washing her self This latest one fore a smaller fee (9 Am to roughly 14: 30 Pm ),and the day left she has a designated support person who comes 2 hours (8 hoers a month payed fore by the county ) . and fore this she pays (via her appointed man from the court to take care of her finances ) and its a great help fore her and they are very supportive as well, the transport ? well again with some more help from the carers he would be able to get cleaned up and ready to go Rosie , and over here there is a special branch of the taxi services that takes this cind of transports (included in the price which over here is VERY low ) were they are located and so on over there i leave to others to inform about but over here its not its in separate localities in a ord house complex ,and the escort service is also included if needed in sed price over here (and mum have it both to and from this days )

    The kee thing as i see this in this case he needs "way" more support from the carers then he currently has thats fore shore (be it at home or a care home )
     
  10. Beate

    Beate Registered User

    May 21, 2014
    11,724
    Female
    London
    Services depend very much on the borough you live in, but here in East London my OH goes to a day centre five days a week, a transport bus collects him every morning before 10am and brings him back around 5pm. Adding to that he gets sitting service through Age UK but both is funded by the council so he only pays a small amount for lunch every day. It's been an absolute godsend for us, the day centre is for dementia patients only and they are very good with him.

    I think you might need to contact social services for another needs assessment, plus a carers assessment for your Mum.
     
  11. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,475
    Radcliffe on Trent
    #11 Pickles53, Jun 25, 2015
    Last edited: Jun 25, 2015
    I mentioned Social Services because often it is either hospital-based or LA-based social services where the process of organising care starts. Even if you are funding carers yourself, you are legally entitled to a needs assessment for your grandfather and a carer's assessment for your mum. SS should also be able to provide you with information on the sources of support available to you.

    Hard to second guess what the hospital did or didn't do to assess your grandad's mental capacity but in any event it wouldn't be the first time they got it wrong and maybe they thought that the incontinence was a temporary situation which would resolve itself when he was well enough for discharge. That's clearly not happening, so even if they were right at the time, it can change very rapidly and should be reconsidered.

    I don't want to make you feel that everything has to be done at once, but your grandad is probably entitled to Attendance Allowance. Age UK and AS have people who can help you with the dreaded forms and it's not means- tested. If he gets AA (or another qualifying benefit) he should also get a reduction on his council tax (ask about SMI reduction) which needs his GP to sign a form. Your mum may also be entitled to Carer's allowance if grandad gets AA.

    All these help with the inevitably increasing costs of providing the help your grandad needs.
     
  12. Emily M

    Emily M Registered User

    Jan 20, 2015
    178
    Day Care Centre



    Hello again Rosie

    Regarding Day Care Centres, Social Services may be able to help you and let you know what is available in your Granddad's area. I think there are centres in Residential Homes but there may well be other options. I know in my Mum's area people could meet up once a week in a room within the GP's surgery. It might be possible for Social Services to arrange transport to and from the centre. it is also worth doing a web search to see what is available in his area.

    EM
     
  13. rosie1234

    rosie1234 Registered User

    Jun 23, 2015
    3
    Update

    This weekend we had some major drama. It all started at 3am on Saturday when lifeline* called our house phone because my Granddad's two next door neighbours were on holiday so we were next in the list to be called. My Mum drove the 20 miles to his house to find him in his bathroom attempting to empty his urine bag. She found the television was on and the curtains were open in his living room downstairs and when talking to him he said it was time to get up (this was around 4am). Obviously we can't be certain what occurred before she got there so she simply put him back to bed and came home.
    On Sunday I answered our phone and it was one of his neighbours. They had returned from their holiday and went to check on him after having an answer message from lifeline. They found him in a bit of a state, the bed was heavily soiled and my Granddad was confused. I called the emergency number for his morning and evening carer and eventually someone went to see him. They left messages on our answer phone as they were concerned about my Granddad and said he really ought to go into emergency respite. Lots of people came and went from his house, me and my Mum went and we ended up having to stay the night after the doctor said the options were for someone to stay over or for him to go to hospital. In the morning I called social services and organized for him to go into respite care at a local nursing home for a week.
    He is now in the home and it is indefinite what will happen at the end of the week as he is insistent that he goes home at the end of the week however my Mum still will struggle to cope with him. Personally I want him to stay at the home as we will know he is always safe there but I think we will end up taking him back to his house, and we'll organize the carers to do a more satisfactory job with perhaps an extra half an hour each morning.

    This is a bit disjointed again so if I've missed anything just ask. Thank you to everyone who gave me advice, I thought it would be best to give you all an update of our situation
     
  14. Sad Misty

    Sad Misty Registered User

    Jun 8, 2015
    31
    Im so sorry to read this Rosie :( , as i sed before dont give up yet dear its pretty obvious to me that the social and al else seams to finally wake up some but also as i also sed they will try there best to get out of this again .so while you're grandfather is in this respite home. What i would suggest is lean on the social care and al else and make clear this cant be continuing and he needs to be permanently in a home :(

    Main thing here is DONT give up and cave in fore the authorities Rosie fore you're and you're family's sake , you're grandfather ,fore you're mum. and thank you fore letting us know dear were al here fore you
     
  15. Demonica66

    Demonica66 Registered User

    Oct 23, 2014
    53
    Hi Rosie, this happened to my Mum. She was given a mental capacity test by Soc Services when she was admitted to hospital. Soc Serv said she lacked the capacity to look after herself. She really had little choice, despite stating that she was 'fine.' It is very sad that things have to reach crisis level before things happen but if at all possible, your Mum should state that she cannot cope. The more you and your family do, the less support you get. You and your Mum hold a few more aces now that your Grandad has been recognised as being at risk. D x


    Sent from my iPhone using Talking Point
     
  16. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,051
    GLASGOW
    The magic words for social services is " vulnerable adult at risk". Its in their training. Keep saying it and make them write it down. It does help. Best of luck.
     
  17. josiejojo

    josiejojo Registered User

    Jul 9, 2015
    1
    Exeter, Devon
    Hi rosie, I feel I am in the same situation as you..

    My grandmother was diagnosed with vascular dementia in April 2014 (she lost her husband in march 2011 who had the same disease, after his death she became more and more reliant on my mum). She has gotten progressively worse over time, which escalated earlier this year after a fall that kept her in hospital for 4 weeks. I know it's not the nurses and doctors in hospitals fault but they do everything for them and routine is so important for dementia sufferers. On returning home she had a reablement team put into place to come in 3 times a day to help her get back into everyday independent (as far as possible) living. She lost the ability to think to get a meal for herself, she can't remember whether she has eaten or not or what she has had if she says she has eaten. They said after the 2nd day that they wouldnt have taken her on if they realised she had dementia! And told my mum they would cease there visits! Leaving my mum in a very tough spot! She is mildly incontinent although does go to the bathroom when she needs think that's more hygiene based. She says she has had a 'strip wash' and goes into great detail about what she has done with hand actions but she doesn't wash at all as far as we are aware unless heavily prompted and watched do it. Exactly a week after she came out of hospital she fell over her commode (not sure how to spell it, the toilet chair thing, which she has not used) ended up back in hospital with 7 stitches in her head and a nasty gash on her ankle that needed a couple steri strips and dressing, where she stayed for a further 9 days. She came out on Monday and my mum has organised one carer to come midday to feed her. My mum is currently staying up there every night (my gran is always surprised the next morning because she has forgotten she was there). I have spent as much time as possible up there but it is very difficult as my gran has no capacity for conversation, and won't have the TV on, you can't read as she just talks non stop repeating herself, and has no interest in any activities (although she did try an adult colouring book picture, but she now just says she will finish it later. She is worse than ever neediness wise, I worry so much about my mum, she doesn't seem to want to put my gran in a home but I don't think there really is any other option as it is taking over her life, my gran is constantly ringing up about silly things too, and forgets in a few minutes she has called, she called just now 10pm thought I answered it and asked if mum was on her way up and my mum tried explaining on the phone it was her and she was on her way up, then when my mum arrived a few minutes later my gran was surprised it was her and said she thought I was going up! I really wish my mum would see that she shouldn't be giving up her whole life to care for my gran. I do all I can and have said I will stay up there to let her have a break but she says she would worry my gran would fall or something worse would happen and she wouldn't want me to deal with it.

    Sorry for the jumbly rant!
     

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