1. amberence

    amberence Registered User

    Mar 15, 2008
    28
    Barton upon Humber
    #1 amberence, Mar 18, 2008
    Last edited: Mar 18, 2008
    Hi I'm a new member and a full-time care for my mother. My mother who has both physical disabilities and dementia, requires looking after and caring for 24/7. Noticed her dementia gradually getting worse, finding her often mixed up and confused, continually repeating things over and over again where it comes to the point started ignoring it all most of the time and most frustating thing for me, started wanting and seeking attenton all the time, asking somebody(me) to be around her all the time to offer reassurance.

    Because of the demands of caring for her 24/7, do need time out if only a few hours in an evening to pursue my own interests which unable to get as my mother quickly gets anxious if not with her, focussing my attention on her. Do get friends and relatives popping in duriing a day to see me and mum but having short term memory problems she can't remember and complains she's on her own all day. I totally enjoy the caring side of things, looking after my mother seeing to her physical needs but her dementia and emotional needs do find that a struggle and a strain.

    Noticed through having dementia my mother increasingly depressed. Is this part of the illness, having dementia. Seems fine in a morning, quite cheerful and then observe and notice her demeanour getting worse as we go through the day, ending up being weepy and miserable. This now the general pattern most days and whatever I do or try can't seem to break the trend. Is it a case of being part of her dementia and have to accept it, rather than trying to do something positive to change her behaviour.

    Beginning to think about her long-term care, going into a care home, respite for a start then probably full-time as want to pick up my life and probably work again which my mum preventing me from doing at the moment. The problem is having not really worked due to health problems, she has only a small state pension topped up by a little pension credit which in no way would pay for her weekly top-up fee in a care home. My father whom already in a care home has a full state pension and an occupational pension plus savings so able to meet and pay his monthly top-up care home fees. My fear is my mum wouldn't on her small state pension. If the time comes to mum having to go into a care home, can any carer give me some basic advice how she would be able to pay for her top-up fees in a care home just on her small pension and what would happen to me regarding any income coming in while found work again which would not be easy as approaching 60 and slightly disabled. Also regarding caring for someone with dementia, any help and advice how to approach it, caring for someone with the illness. Am a outgoing, positive person with a keen sense of humour but caring for family member, my mother with dementia is testing my resolve and just wondering how others caring for someone with the illness manage to switch off and bring a little normality to their lives which desperately looking for but unable to at present.

    Thanks.

    Regards,

    Keith.
     
  2. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    #2 TinaT, Mar 18, 2008
    Last edited: Mar 18, 2008
    Hi Keith,

    Your problems have many echoes here on TP. I also found that the physical, caring side was the easiest for me to manage. It was, as you say, the constant, unrelenting demand for attention or demanding behaviour that got me down. The trouble is, I knew my husband couldn't help his relentless demands on my time, it was part of the illness, but it is this side of the caring that, I think, we all find an almost unbearable strain.

    The feelings of isolation and loneliness are an added factor. We cannot share much of our daily life together anymore. The days of having a chat together or sharing a problem together are now gone.

    It is so difficult to try to explain this to anyone other than a fellow carer, so you have truely found the website where people understand exactly how you feel.

    Regarding funding of nursing home care, please don't give up at the first hurdle. The costs will only be based on what your mother's present income is, nothing of your finances will come into question, and if you are as you say living with her, then you cannot be made to sell the property. It sounds to me as though you may get a very substantial amount of funding. Have you got a social worker? If so ask can she come and help you to get in touch with any services which can be of use to you in finding costings out.

    It must have been a very hard thing to face the prospect that things will have to change and that permanent care is now on the cards for your mother but you have been more than supportive in the care you have given to your mum.
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Dear Keith, welcome to Talking Point

    Just to clarify - do you live with your mother? And does your mother own this property? Sorry if this sounds nosey, but when it comes to the financial side there are a lot of variables. I'll lay out the situation briefly and then maybe we can work out potential avenues.

    Essentially if your mother has saving over the £21000 mark she is expected to pay for her own care, or less than that, social services will pick up more or less of the bill. Now if she owns property that will normally be considered as part of her assets BUT (and this is important in your situation) if that property is occupied by a relative who is over 60 or disabled) the property is not taken into account.

    You situation is compounded by having another parent in a care home. I'm having problems with the term "top-up" in relation to him. "Top-ups" are normally used to refer to payments made by a 3rd party when social services is paying for the placement - they are not supposed to be paid by the placee (if that's a word). I suppose the question I have is: are there any assets in either of their names? Theoretically your father could be passing back 50% of his occupational pension to your mother - is that happening?
     
  4. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Hi Keith,

    Your problems have many echoes here on TP. I also found that the physical, caring side was the easiest for me to manage. It was, as you say, the constant, unrelenting demand for attention or demanding behaviour that got me down. The trouble is, I knew my husband couldn't help his relentless demands on my time, it was part of the illness, but it is this side of the caring that, I think, we all find an almost unbearable strain.

    The feelings of isolation and loneliness are an added factor. We cannot share much of our daily life together anymore. The days of having a chat together or sharing a problem together are now gone.

    It is so difficult to try to explain this to anyone other than a fellow carer, so you have truely found the website where people understand exactly how you feel.

    Regarding funding of nursing home care, please don't give up at the first hurdle. The costs will only be based on what your mother's present income is, nothing of your finances will come into question, and if you are as you say living with her, then you cannot be made to sell the property. It sounds to me as though you may get a very substantial amount of funding. Have you got a social worker? If so ask can she come and help you to get in touch with any services which can be of use to you in finding out what funding is available for your mum.

    It must have been a very hard thing to face the prospect that things will have to change and that permanent care is now on the cards for your mother but there comes a point when this has to be the only option for both your mum's and your own sake.

    My admiration to you for all you have achieved in caring so well for your mum.

    xxTinaT
     
  5. amberence

    amberence Registered User

    Mar 15, 2008
    28
    Barton upon Humber
    #5 amberence, Mar 18, 2008
    Last edited: Mar 18, 2008
    Caring Advice.

    Hi all. Thanks for the replies and advice. Please can I first ask what is TP with regards to dementia.

    I live with my mother in our own house. Have Power of Attorney for both my step-father and mum and and secured their will which gives me the property after my step-father and then my mother.

    Won't have to sell the home to pay for any care home fees for them, my step-father and mother. My step-father now in a care home for his Alzheimer's has to pay a top up fee to the care home, paid monthly. Social Services are the main payer and provider, paying the main and majority of his monthly care fees.

    He has a Care Manager, the same as mum. But told if circumstances change with mum with regards to her future care arrangements will have to be reassessed by Social Services again. My fear if contact them, feel they will recommend a care home if come and see her on a bad day, her demeanour really bad.

    Keith.
     
  6. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    I think you are referring to Tina's mention of TP - it's just short-hand for "Talking Point".

    I don't want to panic you but I'm not sure what their wills have to do with it: when it comes to nursing home placements wills are essentially meaningless. It's all to do with assets at the time of the placement. Theoretically (and it's quite possible that this will not apply in your case due to your age) if your mother had to go into care, the house would now become available for sale in order to pay the care home. While your step-father is in care, but your mother is living there it's disregarded, but if she has to go into care, that disregard ceases and the property "may" have to be sold.


    My point is is this is extremely complex. Assuming that your age means that the property does not go back into the pot, when/if she has to go into care, social service will make a financial assessment. Most LAs (local authorities) have a set amount that they will pay - the person going into care will pass over their pensions and then be left with approx £20 a week personal allowance. However, once both of them are in care, the financial situation of both of them will be revisited. Furthermore - as I mentioned there are very strict rules about where top ups can come from. The normal rule of thumb is that if social services are paying for any part of the care, the top ups may not be paid by anyone but a third party (strange but true), and that's what gives me pause in this case. In other words - when they look at the financials again they may turn around and say that this top up may NOT be paid from his savings, which may mean a change of home. CRAG (Charging for Residential Accommodation Guidelines) is quite clear about this. Now it's possible that your step-father has some income that falls through a loop-hole but it doesn't sound like it (loopholes not being CRAG's strong suit).
     
  7. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Keith,

    Jennifer has laid out the facts very well, I as understand them.

    You might want to look at the Alzheimer's Society's fact sheet on this: http://www.alzheimers.org.uk/factsheet/468

    This is one of those areas where you need to know all the possible ins and outs of the rules. For example, the house would not need to be sold if you were over 60 or if you were younger and had a disability.

    It might be worth ringing the Alzheimer's Society Helpline on 0845 300 0336 to discuss it further.

    Take care,

    Sandy
     
  8. amberence

    amberence Registered User

    Mar 15, 2008
    28
    Barton upon Humber
    #8 amberence, Mar 19, 2008
    Last edited: Mar 19, 2008
    Hi, thannks for all the help and advice given regarding care, and future, long-term care for my mother. As I understand when discussed all this with Social Services when my step-father went into a care home last year, would still keep and have the property if mum also went into care.

    Because they knew at some stage, down the line my mun would also probably have to go into a care home from also looking at her case history and various assessments completed, they went through and discussed with me, their assets both may have and reassured me the property would not have to be sold to pay and fund for both their care. The property is in my name also in the will, which have lived in with my parents for 38 years. Eventually will be passed onto me in the event of anything happening, first to my step-father, then my mother. Also Social Services took into account I'm approaching 60 next year and with the property in my name on the will, lived in with my parents for almost forty years, told me, wouldn't concern yourself about losing the home, and having to sell it to fund for their care in a home. My concern was if mum has at sometime have to go long-term into a care home and only has small state pension as means of contributing to her care in a home, how would she be able to meet the full top-up fee required to pay for her care if at some stage has go in a home.

    Keith.
     
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    #9 jenniferpa, Mar 19, 2008
    Last edited: Mar 19, 2008
    It sounds as if the property issue is sorted (although I wouldn't be certain unless I had it in writing), but I still think the top-up issue is open, for both of them. When your step-father went into care, what "should" have happened is that any joint savings were split, 50% of your step-father's occupational pension should have been rerouted to your mother, and any individual savings separated. If the LA is paying any part of your step father's fees (the LA, not the NHS) then top-ups should be being paid by your mother or someone else, not coming out of your father's savings. Perhaps what you are referring to as "top-ups" is not the same as my (and CRAG's) understanding of them. Possibly you are referring to tarrif income - a rather bizarre concept where you are assumed to be making £1 per week per £500 of savings (obviously non-attainable in the real world).

    Edited to add: cross posted with you.

    If it is really true that your mother has no savings and is eligible for full LA funding but you don't have the resources to pay a top up fee, then I'm afraid that that is how it works: she will be placed in a home that will accept whatever the appropriate funding level is that the LA provides. If thats (for example) £450 and all the homes in your area cost more than that, they will place her in an area that costs less. The only exception would be if she required specialist care and all the homes in your area that could provide that specialist care cost more. If that was the case the LA could not hide behind the "we only pay this amount". It's difficult to prove though. Mostly what happens though is that there are a number of homes that will accept the LA payment as payment in full, and the choice will then have to be made on the basis of availability and preference. The rate that is published by homes is not necessarily the same as they will accept from the LA - my mother's home charged self-funders £600 a week, but would provide the same room and services to LA clients for £450.
     
  10. amberence

    amberence Registered User

    Mar 15, 2008
    28
    Barton upon Humber
    Hi Jennifer. The term "top-up" fee is a contribution paid by my step-father to the care home after and on top of Social Services placement fee to the care home, for providing a service, caring for my ste-father. Social Services did a financial assessment with regards to my step-father's income and assets when he went into the care home, Social Services recommended for him.

    The "top-up" fee, "Contribution Of Care Home Fees For ..." (on the monthly bill sent to me by the care home) comes out of his weekly state pension which just about over four weeks, covers his monthly care fees at the home. His occupational pension is unaffected, though Social Services know the amount he receives when completed a financial assessment regarding my step-father's personal finances for them.

    Keith.
     
  11. tachometer

    tachometer Registered User

    Mar 22, 2008
    9
    east midlands
    long term relationship

    Just thought I'd mention one point which doesn't seem to have been touched on in these replies. When my mother went into a care home the community psychiatric nurse was keen to place my father into the same care home although he may not normally have been eligible. She said it would be on the grounds of 'long term relationship'. Could someone argue this for your parents? That they should not be separated and the LA may be willing to pay the top-up.
    As it happened, in our case my father did not want to go into the Home as he felt he was too active.
    Tachometer
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.