1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

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Don't think I can do it again.

Discussion in 'I care for a person with dementia' started by haribocrazy, Jan 8, 2016.

  1. haribocrazy

    haribocrazy Registered User

    Jan 8, 2016
    Hello all. New here--looking for advice please!
    My mum collapsed at home just before christmas. She has had many tests etc and all have come back fine and the doctors can find no reason for her fall, why she was unable to stand and spent the night on the floor. She was very confused, hallucinating and "difficult" but seemed physically fine.
    She has been diagnosed with depression in the past and I have been to the memory clinic with her about 2 years ago, where we were told that she did not have dementia but depression. Since then her depression has got very bad and her short term memory has almost gone. Since being in hospital I have asked them to test her mental capacity and I have now been told that she is early stage alzheimers. She is no longer hallucinating but her memory is much worse than before she collapsed and she just seems differnt, but its difficult to describe.
    As a family we are new to alzheimers but we are not new to adult social care.

    A few years ago I took on the care of a cousin with a learning disability after his mum died. It was ok at first but after about a year I was finding it harder to cope. I live about 40 miles from my cousin and found I was going in the middle of the night to sort something out, driving for nearly 2 hours there and back and getting up to go to work. And spending nearly all weekend there. I asked ss for help--they did an assessment and said that as a family we were coping fine and he was safe. He was fine--it was me that was going mad. He died 2 years ago and all I could feel was relief. I loved him and came to hate seeing him.

    And now I find myself in exactly the same position. The hospital have assumed that my brother and I will care for mum. They assume that we will visit, do her shopping, sort out her house (its not safe for her) and be at appointments etc when they say. I get phone calls each day asking if I have sorted the house and when I will pick her up.
    I have told them that I will not be her carer. I have explained to each of the 4 wards she has been on and to each of the 3 discharge planners that I will not care for her but for some reason they do not seem to think I mean it.
    I love my mum but I just cannot do it all over again.

    What should I do? I am feeling guilty because I do not want to look after her and the hospital keep saying "when you get mum home" and "when will you be taking her" and "she does not need to be here". I keep saying that if they think she is safe in her house and they feel she can take care of herself then they should just send her home. But then, on the day they say that I should pick her up because she is safe--and I say go ahead but i will not be there---they do not send her because they need to do another assessment.

    I feel that the hospital just want her out and are not listening to anything we say. Her first ward , when we told them she was confused said "no she's not". And now the discharge team are not making any sense and different people are telling us different things.

    Is this normal? Should I take over the care of my mum?
    If you have got to the bottom of this essay then many thanks--just needed to get it off my chest to people that have been there.
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi Haribcrazy
    I just popped in here before bed - but had to reply
    I'm glad you've found TP as you will discover there's lot of sympathetic members to listen and share experiences

    I take it that neither you nor your brother live with your mum.
    And I quite understand that you feel you are being rail-roaded into taking on the care of your mother

    Personally I think ou are right to stick to your position - your mum will need support and they should be organising that before her discharge
    When my dad had a spell in hospital a reablement package of care was put in place - the aim is to make sure the patient is enabled to stay safely at home and recuperate so that there's no re-admission to hospital
    let the hospital know that you expect this and that you know it is usual procedure
    my dad had 6 weeks of carers visiting his home to help him in the morning ie get up breakfast meds, lunch, tea and bedtime also visits fro a physio and occupational therapist, after which some aids eg handrails were installed
    so quite a lot is possible
    after that the care package was tweaked but continued with him self funding - but that's for the future - one step at a time

    you write that they say she is early stage Alzheimer's - and that you yourself have noticed changes - maybe sit down and write a bullet point list of everything you have noticed up to her admission - note everything that your mum usually did for herself but that now you know/believe she cannot do - then list out what you think needs to be done to support her - give a copy to everyone who is dealing with her, and send one to her GP (hopefully a really useful ally - though may need some 'pushing' from you - and may not talk to you about her condition ie patient privilege, but should take note of any information you provide)

    hopefully doing this will make them realise that you have good reasons to be concerned about your mother's discharge - that you and your brother are more than willing to support her BUT you are not going to be blindsided into taking on daily care

    sorry if I'm being abrupt - am tired and need my bed
    by the way - that's where you should be - get a good night's sleep and see to things in the morning

    best wishes
  3. haribocrazy

    haribocrazy Registered User

    Jan 8, 2016
    Shedrech---thankyou for taking the time to reply.

    Reablement has been mentioned, as well as continuing physio. I suppose my real problem is my experience of asking for help before and just not getting anywhere. I have no faith that ss will give me any help if we agree to do anything for mum, so we are just saying no to everything.

    A big block has been thier willingness to send her home before any package of care has been put in place. Each time they phone me to say she is going home I say fine, but I will not be there. And then, for some reason, they do not send her home. If she is fine to go home before a care package is in place why not just send her home without me to care for her? I am very untrusting of ss!!!

    Mum lives alone about 40 miles from me. This is not a problem for ss, who expect me to pop in (how do you pop in when you have to drive an hour before you get there) 3 times a day.

    The house has hand rails etc which were put in for mums husband just before he died. The problem is not really her physical health but her mental deterioration.

    Sorry to moan. Just terrified that I will have to spend another 5 years (or longer) caring again. I don't think I have enough strength left to do it.

    Can I ask if the care was in place before your dad came home? When I asked about this for mum I was told that the discharge planner "hoped" that it would be.
    We have also asked to meet with someone from the discharge team, but are told that we cannot make an appointment and must just try and meet them on the ward.

    I don't think the discharge team like us very much.
  4. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    Stick to your guns Haribo. If you have doubts at this stage, and well you might as you already know caring can be a terrible burden, then you're doing the right thing for your Mum. Sending lots of sympathy and understanding; no one should be put in the position you find yourself in.
  5. RedLou

    RedLou Registered User

    Jul 30, 2014
    Don't do it, Haribo. You know your limits. Just keep firm, keep saying no and don't let them try to guilt-trip you with their assumptions. If you find yourself in need of emotional support, come on here. In general, you'll find it. *big hug*
  6. PeggySmith

    PeggySmith Registered User

    Apr 16, 2012
    Hi Haribo, we're considerably further along the road than you but experienced much the same when MIL was in hospital. Eventually, I discovered she'd told the staff that she lived with her daughter and that was the reason they were preparing to send her home with no care package in place. She has two sons and no daughter. Once the staff realised that she lived alone, things changed as they didn't expect daughters-in-law to take on the caring role. I didn't disabuse them.....

    As the others have said, hold firm and make them do what they should have done in the first place.

    By the way, MIL was eventually discharged with a good care package (4 visits a day amounting to 2.5 hours) which meant that we could fill the gaps as we all live very close to her.
  7. marionq

    marionq Registered User

    Apr 24, 2013
    Thank you Haribo for raising this issue. I have been in discussions with SS since before Christmas about my SIL. My husband was her main support as she is handicapped but very active. He now is in the fourth year of AZ since diagnosis and I am caring for him. I get regular call outs to sort her affairs out, pick her up from hospital, manage her relationships with neighbours etc. I can't do it and have told them so.

    Nevertheless since her communication skills are negligible I spend sleepless nights trying to figure out a solution. Eventually I will just have to dig my heels in and say this is not my responsibility and I am up to my eyebrows in AZ. It is a battle between SS and SIL who doesn't help matters by ignoring essential advice.
  8. haribocrazy

    haribocrazy Registered User

    Jan 8, 2016
    wow---thank you all so much. I am literally sitting here in tears now because of your comments.

    Caring for a person that although you love, you have not taken an active decision to care for just piles on resentment.

    I have a daughter who at 9 years old became ill. She was unable to get herself out of bed or go to school. We were told that there was nothing wrong and that she had mental health issues. Anyway--at age 20 she was finally diagnosed with a fairly rare auto-immune disorder and started on a drug trial. The change in her has been astounding. She has tons of energy, recently married and now is close to giving birth to a "miracle" and very unexpected baby. She was told that the chances of her being a mum were almost non-existent and so we are all so very happy. However, she has had to come off the drug trial and has little energy. I care for her while her husband is at work. And we are all waiting to see how healthy she is after the baby arrives.

    The hospital know this and they know I live 40 miles away down the m25--a journey that can take 2 hours depending on the time you start out. Soc Services also knew that I cared for my daughter and worked full time when I was looking after my cousin but it seems to me that if you say you are willing to do one thing you are expected to do it all.

    I think that because my mum managed perfectly well before she collapsed she does not understand that she can now no longer do it by herself. She has told the ward that her friend will go in every day andmake sure she is well--this friend died 7 years ago but the ward and ss were happy to just take mums word for this arrangement.
    Another friend turned up on the ward to take her home yesterday (we had been asked to come and get her and had refused) and she was dressed and waiting to go. But mum had told another friend who visited her earlier that we were refusing to let her home, had stolen her mobile and keys adn she would have to go home on the bus. So her friend and neighbour arrived to pick her up---even tho we had explained to him about her condition. Luckily my brother was there at the time, trying and failing to speak to someone in the discharge team. Because he said that the friend (who is older than my mum) would not be taking care of her and the friend confirmed this to the ward staff they refused to let her go. But if he had not been there she would now be sitting in a cold house with no care in place.

    I don't think ss know what to make of my refusal to care but willingness to fight for her to have adequate care in place before she goes home.
    I would really be interested if anyone else has done this and how it turned out? One member of ward staff has said to my brother that we are spending time arguing about ss when we could just spend that time getting her house ready for her to go home. Has anyone else found this?

    I also have not told them about my experiences with the adult ss team in the area. Does anyone think it would be a good idea to explain?

    Thankyou all again for taking this time. When I was looking after my cousin it felt like the loneliest, longest, most dreadful job on the planet, all without thanks or reward. To find this forum with others that have been there and are STILL doing it makes it less scary.
  9. haribocrazy

    haribocrazy Registered User

    Jan 8, 2016
    One more thing!!
    Does anyone think it would help if we wrote to the discharge team stating that she will go home without family care and support but that we want to be involved in her planning? We keep getting so many phone calls where the person has assumed that we will do the care that I think a letter will at least be on file.
    thanks again
  10. Beate

    Beate Registered User

    May 21, 2014
    What you need is advocacy. Contact your local Alzheimer's Society, Age UK or Carers Centre, explain the situation and ask them to speak to the hospital for you. They know procedures, they know people and they know how to get results. They will fight your corner.
  11. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    #11 nae sporran, Jan 9, 2016
    Last edited: Jan 9, 2016
    Morning Haribo. you have been thorough a right series of trials and tribulations. So sorry to hear that.
    Not much I can really add to what has already been suggested, but my OH was discharged too early with a UTI a couple of years ago and when she was readmitted I made sure I got a meeting with a nurse, the care support centre sent a liaison officer who was wonderful, she even helped to sort out the care package with a call to the Hospital Social Services. The result was a much more sensible discharge second time round. Anyway, just trying to say digging in your heels and getting some support for your case does work, Wishing you all the best, R
  12. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #12 Shedrech, Jan 9, 2016
    Last edited: Jan 9, 2016
    Hi haribocrazy
    lots of support for you has been posted to give you back up - TP is great!

    Yes, the package was in place before dad went home, though I'll be honest, there were blips and tweaks
    and I was there when they brought him home to make sure all was well - I didn't take him, maybe that was one key moment - though I may have stayed that first night, I'm afraid I can't remember now as a few years ago
    I only lived a short walk away so it was easy for me to pop in and check on him - eventually I gave up work and was there all day - when he wandered at night we found a care home
    Quite how things would have worked out if I hadn't been able to regularly supervise, I'm not sure - however the carers themselves were the best I've ever come across, very proactive and totally on the ball, so they noticed things I had got used to and thought were 'normal' and reported back to SS and suggested ways to help - they were the best aid I ever got - most especially they helped dad get over the 'I'm OK, I don't need help, my daughter will do it all' - so he accepted carers going in from then on

    I think you have to weigh up how things stand - do you think your mum will cope if she goes home with a full care package? - or are you considering a placement in a care home? - or respite for a few weeks while you make the house safe (that comment made me concerned - and may be your way to force further action by pressing on them that the home isn't safe and NO you are NOT in a position to make any alterations)

    also, how are her finances - would she be self funding or require LA input - if self funding you may have more choices, especially if your mum agrees with what you want to do - if LA involvement, they will most likely insist on her going home with a care package before ever considering a care home

    Do you have Powers of Attorney in place? If not, I really would recommend that you organise both Finance and Health & Welfare. However, if your mum still has capacity, then strictly SS etc have to abide by her wishes. Do you know what your mum truly wants to happen - it's easy for her to say she wants to go home, I expect she will, and if she does then it's difficult to see what else SS can do - or is she too worried about going home?

    Sadly, you may be in the position of accepting that she goes home - with you and your brother doing only what you are willing and able to (and you've already had responses here to support you in being hands off) - and waiting to see what happens - I'd keep pretty detailed records after her discharge so that if another crisis occurs you have lots of info to offer

    some phrases that might help are - best interests - vulnerable adult - at risk - duty of care

    sorry - you probably have so much experience that you already know all this
    I wish you all well - keep us updated :)

    PS This crossed with your response and posts after that - I type slowly -
    Beate has a really good point - an advocate - and nae sporran has the title of the person to liaise with ie the care support centre liaison officer

    Only you can decide whether or not to give the background of why you are unable to take on your mum's care - if you feel able to share it, do so, they may take it on board, but there is pressure on them to empty the bed, so I wonder if it will fall on deaf ears - maybe Beate's idea of advocacy is your way through - an advocate would be able to put your points across neutrally but with some authority
  13. RedLou

    RedLou Registered User

    Jul 30, 2014
    Try not to care what they think. They are just trying to pressure you. As for that comment, personally I'd shoot straight back that if they all stopped arguing with you and spent the time getting a care package in place, they might be able to discharge her!! But then I'm quite assertive. ;)
    Incidentally when my father was once discharged home from hospital, the social worker and her team inspected his flat and put in devices to help his mobility/safety. That was another EU country but I can't believe the system is different here. ?? Someone else will advise, I'm sure.
  14. Spiro

    Spiro Registered User

    Mar 11, 2012
    You say she had depression and that can be an early sign of dementia. Is your Mum under the care of Old Age Psychiatrist (the doctor in charge of the memory clinic)?

    If she has Alzheimer's, then there are drugs that can be prescribed.

    You say she collapsed at home, but how did she get to hospital? If you dialled 999 and she was taken hospital by ambulance, then I wonder if they did a CT scan to try and establish the cause of her collapse.

    On Monday, I would suggest that you contact the medical team at the memory clinic and find out if one of their team is based at the hospital where your Mum is a patient.

    If there is a psychiatric liaison nurse based there - they can re-assess your Mum.
  15. haribocrazy

    haribocrazy Registered User

    Jan 8, 2016
    hello again, thankyou all for the replies.
    Nobody has mentioned memory clinic. When I asked about firther help I was told that she would have to be referred by her gp. When I took her to the memory clinic they said that she did not need their support because she "only " had depression and discahrged her.

    She has had a ct scan and lots of heart tests. All have come back as normal.

    My brother found her on the floor and we think she was there all night. Had to get the police out to break in because she has refused to let anyone have a key. This is not a new thing---only she and her husband have ever had keys, even when they went on holiday.

    Have just spoken to the lead on the discharge team who wanted to send her home today. He said that a care package had been put in place (nobody has told us). I asked about the stairs because they are very steep and since her collapse she has been very dodery. Told that she would be sleeping downstairs. Asked what was to prevent her climbing them but he said that he did not think was an issue.

    Also I asked for the number of the key safe they had fitted. He said that we had the number from before she was admitted. Explained again that before she collapsed and was on the floor all night she was completely independent and did not need a key safe. He said that he would look into it tomorrow but i dont think that they have fitted it. Even tho the ot from the previous ward was the one who said that she needed it.

    So-now she is not going home because nobody can get in if she collapsed again.

    I don;t think mum needs a care home. Physically, apart from the collapse and being unable to even stand for a few days she now seems very well. Except for the loss of memory (which we had noticed before) and the disorientation (which is completely new) she is very well. And if you catch her in a good five minutes she makes perfect sense.

    MY real fear are the stairs. But they are sending her home to sleep downsatirs and instructions not to walk up them, so I assume that they do not see it as an issue. OR bathing, as the bathroom is upstairs as well.

    He really did not like me--I could hear his frustration in his voice and he said that he had half a hospital to care for and then he put the phone down.

    I am worried now that I have obviously alienated the care team.

    My brother and I will move the bed downstairs tomorrow, although there is little room in her house but she will just have to manage. Hopefully we will be able to move her to other accommodation (she rents from a housing association) very soon.

    Again thankyou for the support. I must admit that I am wavering now. I don't want to be in the same position of caring for someone, travelling down in the middle of the night to sort something out and then getting up to go to work. But the guilt is really starting to kick in. I am sure she will be home tomorrow, This is much better for her but I feel as tho I have had to fight every inch of the way.
  16. haribocrazy

    haribocrazy Registered User

    Jan 8, 2016
    Thanks again for the help. Sitting here crying now. But I think that perhaps most of you understand.
  17. fizzie

    fizzie Registered User

    Jul 20, 2011
    Hallo Haribo
    First I would just like to say how brilliant you have been through this whole trauma- so supportive and kind
    Secondly I wouldn't worry about the care team. They sound as though they have been not at all competent and have certainly not made the pathway to discharge smooth and seemless and that is their job. It sounds as though there are a number of things that still need to be ironed out. your mum should have had a visit from the falls team, the OT or the physio to check the house is suitable, if this hasn't happened I suggest you block her going home until the do something - they may need to make sure that she can access things safely or you will be heading for another fall.

    How long before she moves?

    Age UK have a home from hospital worker sometimes to give extra help and support when someone first comes home. Worth a call to them 0800 169 2081 if you have time. Ask them for some extra support while your mum gets settled

    Thinking of you
  18. haribocrazy

    haribocrazy Registered User

    Jan 8, 2016
    Thank you Fizzzie
    Have not heard of a falls team and the hospital have said that the house will be assessed when she is home. We have said that we think this is not safe but they told me today that this is what is going to happen. TBH I just want her home now. She is distressed and angry with me for not taking her.
    I will be speaking tomorrow to the senior practitioner who phoned me today and say the magic words" duty of care, safety and stairs" as suggested by shedrech and then follow up with it in writing.

    WEhen I asked about home assessment before actually going home I was told that they do not do that. Could I have requested that and should it have been agreed to?

    This could have all been done last week after she had an echo-cardiogram. Unfortunately it was very hot on the ward and alhtough they told her not to drink anything they did not take away her drinks. So she had a drink!. Had to wait until this week to have it done. And when she got back the ward had lost her teeth.

    She has no money (and neither do I) so all her care will have to come from LA.
    I shall definitely phone age concern tomorrow as has been suggested.
    Don't know about moving because she is a HA house and I have to get her onto a list to move. Don't think it will be speedy.

    I have not spoken to the same person on any consecutive day. She is now on her 3rd ward and had a different manager for each ward. Does not make it easy.

    thank you all again.
  19. fizzie

    fizzie Registered User

    Jul 20, 2011
    #19 fizzie, Jan 10, 2016
    Last edited: Jan 10, 2016
    So sorry they are making this so hard. I have only ever heard of them doing an assessment before someone goes home because it is for safety but if you want her home then you know best but you must be shattered.

    That is crackers to have to wait a week with her just stuck there because they can't put her in.
    Regarding the lost teeth, the hospital have lost them and they MUST pay for a new set, make sure you write down the details and then write to the CEO and tell them that you expect them to pay she and her teeth were in their care, she has dementia and the hospital are therefore responsible. Another job!!!

    Yes definitely a phone call to Age UK to see if they will send you some support especially regarding the housing as it needs an urgent tag on it, a letter from your GP would be helpful saying she needs appropriate accommodation following a fall and it is therefore urgent - you could really do with that, thinking of you x
  20. haribocrazy

    haribocrazy Registered User

    Jan 8, 2016
    thankyou for the message. I am not allowed by the forum to pm back as I do not have enough posts.
    Did you, I wonder get a curling pit of dread in your tummy at the thought of doing it all over again? That, and my guilt, is keeping me awake at night.

    I was going to write that its nice that so many other people have been there and done that, but perhaps "nice" isn't the word!

    Thanks again for taking the time to pm, it all really does help.
    Now off to do battle at the hospital.

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