What happens next I wonder?

Discussion in 'ARCHIVE FORUM: Support discussions' started by p34nut5, Jul 21, 2008.

  1. p34nut5

    p34nut5 Registered User

    Apr 17, 2008
    23
    southampton hants
    Hello There,

    Mum is still in hospital having her assesment for the dementia. She's been there for 3 months and has become attached to the place (probably because the staff have been great with her) and is calling it home. The trouble is, the consultant has recently said that there is nothing else that can be done medically for her and that he recommends that she now needs 24 hour care ie Care Home. My brother and I have asked that she comes home to her bungalow to which the doctor said only if the care can be provided which suits her needs.

    We have not yet contacted Social Services so have no idea about what to expect next. Can someone please let me know what level of care I can expect her to get at home? Our family will provide full-time supervision for her (between us) but how much Professional care can we expect daily (we live in Hampshire)? Also, what kind of financial support can we claim presuming that we need the highest level of care possible?

    I'm pretty scared about what's going to happen next and whether we are capable of looking after her properly at home without the support of the hospital to fall back on. In an ideal world, I wish she could stay in the hospital. In the real world, I want her to get as much support as possible so all suggestions / experiences would be welcome.

    Thank you,

    Sue
     
  2. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007
    211
    Southampton
    Hi Sue

    I'm also in Southampton! I care for my Dad who has AD. He's currently in respite (comes home tomorrow) Would suggest you get a Social Worker allocated asap and a Community Mental Health Nurse (previously called CPN's - Community Psychiatric Nurses) if you do not already have one allocated. In Southampton they form part of the Older Persons Mental Health Team. They will provide you will practical help & moral support for your Mum and you as the caring family in so many areas.

    You need time to get arrangements in place & rest assured the hospital cannot discharge her until you have suitable arrangements in place, so firstly don't panic"! There should be a care planning meeting prior to your Mum being discarged, to make sure that suitable arrangements are in place, they have a "duty of care" ands cannot & will not just discharge her without this.

    Are you thinking of your Mum returning to the bungalow & living on her own? Not sure how capable she is , but depending on how capable she is and how much support she needs, will dictate how much care is provided. You can get carers in (several times a day if necessary), arrange day-care centre & regular respite breaks (all via Social Worker.) Payment for such services will depend on your Mum's financial assessment (social worker will arrange this too.)

    You've got a lot to take in with the recent diagnosis, a lot to think about and a lot to sort out. Don't be rushed into making a decision before you have had the chance to explore all the angles.

    Dad comes out of respite tomorrow - so I will be moving back with them, where I don't have access to the internet unfortunately. So will be unable to respond further after tomorrow morning. But I'm sure that other TP members will provide good advice & guidance - this is a wonderful site for providing moral support from those who know what you are going through.

    Wish you good luck with sorting out the best possible arrangements for your Mum.

    Take care

    Love

    Gill x
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    #3 Brucie, Jul 22, 2008
    Last edited: Jul 22, 2008
    We're involved in trying to sort this at present, for someone who has cancer and maybe dementia too.

    We are being advised not to think of taking the person home as 24 hour care cannot be provided there [this is in Wales], and we would have to arrange and pay for overnight care - despite the fact that the person would probably receive NHS Continuing Care in a care home.

    Besides that there are 4 daily visits of 1 hour each.

    It is a different situation when someone had dementia [though in our case the cancer is either causing dementia like symptoms or the person [87yrs] has early dementia]

    The difference between cancer and dementia is often duration. We have been told to expect 6 months, whereas dementia can last years, decades.

    We are telling the SS/NHS that the person should have the opportunity to try being at home with whatever care package we can arrange, and if that doesn't work, we can try another option.
     
  4. p34nut5

    p34nut5 Registered User

    Apr 17, 2008
    23
    southampton hants
    Hi Gill

    Thank you for the information. Mum is in The Western Community Hospital in Millbrook - opposite to the big Tescos. We had the consultants meeting last wednesday and it was mentioned that she would only be in hospital for another couple of weeks, but there has been no mention of her discharge or any contact from Social Services? I feel that without contact from Social Services etc I'm in Nomansland. Mum does need full-time supervision and that will come from within the family but it will take us time to organise.

    If we care from her at home, do you know what kind of financial support we can claim?

    Thank you again. I hope your dad is refreshed when he comes home.

    Sue
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #5 Margarita, Jul 22, 2008
    Last edited: Jul 22, 2008
    Not sure in what area you mean financial support

    So Just say


    Someone will have have to give up working to be with your mother 24/7 7 days a week , so then the person receive
    Income support carer allowance.

    If you balance work with caring it all depends on the hours you work to get any financial support

    Your mother can also get attendance allowance, also direct payments to help pay for services , to give the carer ( family member) support in looking after your mother
     
  6. Clive

    Clive Registered User

    Nov 7, 2004
    716
    Hi Sue

    Before you agree to your mum moving from Hospital have you establish why your mum is not being offered “NHS Continuing Healthcare” ? This is when a person is so ill that they qualify for free healthcare rather than means tested social care. The NHS pays all the bills in any setting, i.e. in your home, in a residential home, or a nursing home. If you have social care from Social Services the cost is means tested.


    I would not want to get your hopes up as “NHS Continuing Healthcare” payments are very very difficult to get, but if you do not ask you may not be told about them.


    Regarding taking your mum home to look after. I did this and I found that mum had become so institutionalised by her stay in hospital that she had forgotten how to do the simple things like make a cup of tea. I, and a team of private carers, looked after mum in her own home for several months. Unfortunately she never relearned the things she had forgotten in hospital and eventually we decided that it was safer for mum to take up residence in an EMI Residential Care Home.

    Though I am pleased that we gave mum the extra time in her own home, I do acknowledge that moving directly into a Care Home from hospital would have been the more sensible option.

    Hope the above is some help.

    Best wishes

    Clive
     
  7. Helen33

    Helen33 Registered User

    Jul 20, 2008
    14,697
    Hello Gill

    I just wanted to say I hope all goes well with you father coming home from respite. I am also sorry that you will not have internet access but it will not be "out of sight, out of mind" we will be thinking of you.

    Love and best wishes

    Helen
     
  8. Clive

    Clive Registered User

    Nov 7, 2004
    716
    Financial support.

    You probably know that if your mum is getting Attendance Allowance and has been diagnosed with dementia and lives alone, she qualifies for free Council Tax.

    Clive
     
  9. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007
    211
    Southampton
    Any news?

    Hi Sue

    Just popped home to pick up post & check e-mails & wondered how things were going with your Mum.

    Apologies if I have overlooked a more recent thread, don't have time to catch up on threads until I am back home for a bit longer. Will probably be a week before I get access to my PC again but would be interested to hear how you're getting on.

    Take care

    love

    Gill x
     
  10. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Hi Sue, has anyone outlined (as a professional) what her needs are? Just as one example (and I am in bit of same boat as Bruce here as someone concerned about both cancer and dementia needs, I admit) my mother needs a special mattress and to be turned every couple of hours through the night as a minimum (never mind other 24/7 needs) .... as a family, we just do not have the resource to enable that at home, much as I would have loved to be able to nurse my own mum in her own home ..

    A couple of years back just with the dementia diagnosis - with me professing how much mum would want to remain at home I was assured it could be done with sleep in carers - however - at something like £14 an hour quoted then just for the 'overnights' ..... (times eight hours ..... times seven nights a week ..... start counting on toes at this point :eek: ... the only way I can 'afford' to pay for mum's care out of her limited but just about self-funding threshold (sadly not being a millionaire myself)is for her to be in a NH with the prospect that her house is there as an 'asset' should we need to sell it to raise the funds ..... if she God, willing defies her prognosis ....

    In the meantime, on a borrowed time' prognosis of terminal cancer and dementia I have been amazed at what battle I had just to secure a 'Nursing Contribution' to mum's care .....

    Sorry, know that might all sound doom and gloom - but I was absolutely determined mum would see her last days in her own home (years ahead I had hoped) ... and realising it is just not viable - for medical/nursing needs - let alone having to worry about the finances of care at times like this - is a b*mmer!!!!!

    Love, Karen, x
     
  11. p34nut5

    p34nut5 Registered User

    Apr 17, 2008
    23
    southampton hants
    Thanks to all, message to Gill

    Thank you for all your replies.

    Gill,mum is still in the Western Community Hospital. I was told by her ward matron that the Adult Services will be contacting me very soon so that a Care Package Assessment can take place - probably quite soon now I expect. My brother and I are hoping for her to come back to her bungalow, but I haven't got a clue yet how we're going to pay for her care - she will need 24 hour.

    Anyway, at least there's progress in that I will be hearing from Adult Services soon.

    Hope all is well with you after the respite care.

    Sue
     
  12. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Sue

    Please read & consider Clive's post (#6) on this thread.

    Best wishes
     
  13. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Sue

    I was in a similar situation last year. My husband John spent a month in hospital, and whan he was due for discharge I was advised that he needed 24-hour care.

    The situation was different in that he wasn't in an assessment ward, he had a severe infection. As a result of that he lost balance and mobility.

    I was determined to bring him home, but was advised by everyone not to do it. The reasons were these:

    1. I was not physically able to handle him, and the most I would get would be three visits a day from carers. How was I going to change him between times, and change his position every two hours? Even with a hoist I couldn't do it alone.

    2. His infection would recur, so he'd be in and out of hospital, traumatic for both of us.

    3. He'd have to go into a NH when I found I couldn't manage, so that would be another upheaval for him.

    4. Transfer directly from hospital would be bettter for him, it would be just going to a different 'hospital' until he was better, rather than having to take him from his own home.

    I'm not suggesting that your mum is in the same position as John was, but the points are worth bearing in mind, and may suggest some question for you to bring up at the discharge assessment.

    Love,
     
  14. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hi Sue

    I admire your quest, but if you are self-funding you are looking at about £800 a week for .... years just for the night care. A care home might be 2/3 of that or even half for full time care, giving the family plenty of time to visit.

    Horrible decision. Good luck.

    Margaret
     
  15. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007
    211
    Southampton
    Catching Up...

    Hi Sue

    Sorry for the delay in replying - managed to pop home a couple of times but always lots to do in the short time available while the MIND sitter is keeping Dad company.

    How are things with your Mum? Is she still at the Western? Wonderful place & wonderful staff there! Have you been allocated a Soxial Worker yet? Ironically our social worker is also based at the Western and so far they have been wonderfully supportive - hope you find the same with yours.

    I was determined to try to keep Dad at home for as long as possible. He was at Mooregreen Hospital for about 10 weeks assessment after breaking his knee (the fall sadly led to a severe decline in his mental health.)

    Every case is different, and guess I am lucky in many respects that I was able to give up work (at the time I didn't know how long my career break would be - but scarily - it will be 2 years in November!) Also I have no other ties (i.e no "other half" & no children) to consider. Sadly my Mum (82 & registered blind) would not have been able to manage him at home without my help)

    It's a huge step to take over 24 / 7 nursing care (particularly as I'm not a nurse!) - but we have managed and if I had to make the decision again I would definitely elect to do the same.

    Financial support is dreadful (£50.50 per week carers allowance) - not eligible for income support I'm afraid. Dad is very variable - when he's having a good spell he's a delight to look after, but when the aggression & hostility kick in it's really hard to deal with. Nights have improved recently - but we have had our fair share on sleepless nights - and that's really tough, especially when we get several bad nights on the trot. So it's no "walk in the park" but I'm still pleased that we made the decision to bring Dad back home.

    Because Dad was diagnosed 18 years ago - we have built up quite a lot of support during the long journey, most of which have come about either through our social worker or CPN (now called Community Mental Health Nurse). We have regular planned respite breaks since January this year which have proved to be our life-line, and a sitting service twice a week provided by MIND along with regular visits from our CPN.

    At one point we had 2 carers in three times a day, but we have elected to reduce this to mornings only now as Dad became very agitated when carers tried to get him into his pyjamas at 7.30 p.m (as they couldn't accommodate a later call.) I generally manage to get him to bed OK.

    Until he broke his knee in May last year he did attend a day centre twice a week, but when his mental health nose-dived, it was decided that this was no longer suitable for him.

    OT department have also provided a lot of equipment for the home including having handrails put up & a hoist for when his mobility is really poor.

    I've also managed to get NHS continuing care for Dad earlier this year, but it was a long drawn out process and again the SW provided a lot of help & support with filing my application.

    Whatever you choose to do Sue I wish you all the best with it.

    Please let me know how you are getting on & I will try to catch up next time I get home (hopefully Monday if the "prodigal son" turns up to do his bit for a couple of hours!!!!!)

    Take care

    Love

    Gill x
     

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