1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Totally lost and confused

Discussion in 'Legal and financial issues' started by Worrywart 2, Aug 7, 2015.

  1. Worrywart 2

    Worrywart 2 Registered User

    Jul 7, 2015
    Thank you all for your replies, I am worn out! I do feel like I am letting her down and she has no conception of how this is affecting me - vascuakr dementia has already stolen my mother. But the cheaper home is much more affordable long term and I don't think the extras that the more expensive home offered is worth the stress that I would endure.

    I have another worry. I have been told for the first 12 weeks my mother's property is disregarded so she may qualify for some help from the council. Her capital is about £23000 so she is just under the threshold. BUT and here is my worry - before her sudden decline she was ok cognitively - my sister had to give up one of her jobs to take over her care when I was taken seriously ill and hospitalised for 3 months. My sisters house needed some essential repair but she could not get a loan owing to her reduced hours at work, my mother agreed to loan her £4000 to do the work and my sister would pay it back at £100 a month. About a month after this happened though my mother seriously declined and was hospitalised. I'm worrying now they will say this was done to avoid care home fees which is wasn't, there hadn't been any mention of care home until she was hospitalised and in any event we knew she would have to pay herself because of the house - we didn't know about the 12 week disregard at the time. Am I worrying unnecessarily? I'm so anxious at the moment about everything and I have to sort all the. Paper work out.
    Any views please?
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    My gut response = don't sweat it. Amounts of repayments showing up on bank accounts will prove all was done in good faith.
  3. PeggySmith

    PeggySmith Registered User

    Apr 16, 2012
    I don't quite understand why your Mum needs EMI home? MIL has vas dem and is in a nursing home not specialist. I assume she had some kind of infection that landed her in hospital? In which case she should improve a bit plus hpl does tend to make dementia worse.
    MIL' s NH does train staff re dementia and they have a few wanderers etc although they can't manage people who get violent on a regular basis. Sorry to add to the confusion...
  4. Greyone

    Greyone Registered User

    Sep 11, 2013

    Your local authority should have a list of approved homes that accept council rates with or without a top-up required. If your social worker does her homework she should find more than one place to consider. We (Me and my sister) looked at the list from our council and crossed off ones that were obviously unsatisfactory because of the CQC rating and very bad location. We ended up with about 8 , but chose 3 that were at least of an acceptable standard and were easy to get to. Two out of town places were very nice but not always easy to get too on public transport. We were lucky because our third choice was 15 minutes from use.

    One consideration is that the home must accept LA funding because in the long term she may have to move for economic reasons (if it becomes too expensive). The decision is a difficult one and i hope your family can share the burden of the decision with you.

    Our 3rd choice home was rated as good under the old inspection and then requires improvement across the board on the new inspection. So we were worried for a while. But now we have seen how well she has been treated and she appears happy there and we are both happy with the staff.
  5. consheets

    consheets Registered User

    Jul 14, 2015
    Elder Care Lawyer

    The best thing you can do for your Mom is select a GOOD Elder Care Lawyer who will help you with all you decisions. Shop around for the BEST lawyer. Some will not charge an initial fee to meet the first time. Get an all inclusive price so that if you have to email the lawyer with questions, or the lawyer has to make copies, or you need to call the lawyer, you are not charged.
  6. Ourcat103

    Ourcat103 Registered User

    Aug 8, 2015
    I have this to come!

    My husband has Alzheimer's disease which I reckon he has had for about 7 years.

    He first went to see a consultant in 2010, it was an early morning appointment and as I suffer very badly with IBS I was unable to go to see the consultant with him, his poor memory was put down to his age then. It had taken me the best part of 2 years to get him to see our GP, I didn't think his poor memory was age related in 2010 and he saw our GP again in 2012.

    This time instead of seeing a consultant a community nurse was sent to see him at our home where myself and my son could say exactly what was going on, he had a CT scan and a SPECT scan, these scans, mine and my sons input and my hubby's presentation the community nurse was able to say that my hubby had Alzheimer's disease, the nurse used to report his finding back to the consultant each time he had been.

    I am not in good health myself and it has got to the stage now where I have to do everything for my hubby even to putting his clothes out for him to wear. He used to be a lovely cook, but I had to stop him using the gas before he was diagnosed with this horrible disease, you have to push the grill button in on our cooker until the grill lights up, my hubby forgot to do that and he couldn't smell the gas. I had been to the bathroom, came back to the kitchen smelling badly of gas so I told him not to use the gas any more.

    While my hubby is still at home and will be while I am able to care for him, I have been trying to keep abreast about funding for care homes and I feel so sorry for the opening poster, I am not at her position yet, but can really feel what she is going through, I do hope that everything gets sorted out properly for you.

    This is my first ever post on this board, I do hope I have not done anything wrong in posting on this topic, but I am very sorry if I have. It is a learning curve for me and I'm sure I will need help in the not to distant future from the members at TP.

    Thank you for reading this post and again I am very sorry if I have posted on another persons topic.
  7. mousehold

    mousehold Registered User

    Mar 25, 2015
    Oh my goodness, just reading all this is giving me a stress attack and making me feel quite ill. Why is there so little help for us all? My mother went into hospital and then 2 care homes when I was having a liver transplant and I used to lie in my hospital bed just worrying myself sick(er) over it all. There was only a social worker to help, mum kept getting shuttled around, once with broken glasses and one slipper in a taxi on her own! As soon as I got home I had to try and get someone to take her basics as I was immobile and also sort out all the terribly complicated finances. I can't offer anything useful to say, just it was the worst time in my life but finally it is all sorted. It will get sorted out in the end is all I can say, which is not much help.
  8. percot

    percot Registered User

    Jan 4, 2015
    My mother went into a care home in April.She lived in Wales but wanted to move to a home in England to be near me. This is allowed under the rules set by the Welsh Government. I visited many homes and checked even more CQC reports; made a shortlist of three and took her to see them. The one she liked best was the one that gave us tea and cakes :). Luckily it was the one with the friendliest, most helpful staff and that is what swung it for me. We were introduced to carers, nurses and domestic staff, all of whom said they had worked there for many years. I think the staff make all the difference. The home does not have underfloor heating and my mother supplied her own flat screen tv but it is clean and warm. She is not very sociable and never has been but they seem able to judge how much contact she wants and needs. I think she is happy and settled there. In your position I would go for the home that gives the best care even if it is not the most luxurious.

    I hope your council in Wales is not the one I have been dealing with for the financial assessment. It is nearly six months since I sent the forms in and still no progress.
  9. Rural Mouse

    Rural Mouse Registered User

    Aug 5, 2012
    #29 Rural Mouse, Aug 27, 2015
    Last edited: Aug 27, 2015
    Care Home Fees

    I have only just come across this thread. Worrywort I was in your position three years ago. To cut a long story short, very long unfortunately, I was exhausted and had I not been things may have been different. Anyway there was not a suitable home on the Council list provided, or one within their £420 limit, when I was given a week to find one to remove my mum from the Council Respite Home as they could not keep her (no explanation). She had her own home and I had been her carer, with a care package provided and equipment for years. However, they suddenly could not supply a package for her to go home to - I did not live with her but told them I was willing to do so in order for her to stay in her own home which she wanted, and I was just turning 60. I did not know then that if a spouse, relative or carer over 60 resides there the home CANNOT be taken into consideration. As I say had the stress of the whole situation not been so overwhelming, it would have been different. The staged fiasco of Continuing Care Assessments were the final straw for me.

    Re the Top-ups - Having given up work many years before to care for her my own savings had long gone and because any contribution would have been impossible for me, I did not sign that agreement. All top-ups for previous respite came from her own small capital which they always accepted.

    Re Self Funding - I found a normal residential care home near me, it turned out to be a good choice. I then got her settled in and put the house on the market to fund the fees. The Council put a Deferred Payment in place, effectively a loan for the whole amount of the fee less a contribution of an agreed amount from her own capital as PoA. Her income is no longer assessed at this stage. As you know as soon as she was no longer in her own home she would be a self-funder and no longer the responsibility of either SS or NHS (Lots of health issues including Vascular Dementia and Diabetes).

    Securing the Funding - I arranged an Immediate Care Plan (ICP) , the Financial Adviser's fee was £387. The plan covered the whole of her life, for an amount from the proceeds of the house sale. There are several options, it acts like a lifetime annuity, paying the balance of the fees she was unable to cover from her own income, for life. By the way her income still include DLA as well as her pension. She would never have to worry about being moved out for lack of finances. It was an arrangement that gave me great peace of mind for her security, I visited every week and she was really well cared for by dedicated staff in a beautiful environment. But she did go down very quickly after the move. If I had had more time I would have involved her much more in the whole process.

    Unfortunately, mum died 8 months ago. The house has not sold and is still on the market, although I did rent it out for a while to top up her capital which was paying the contribution to the Deferred Payment. Since her death, the debt remains but with interest accruing, for which I am invoiced regularly. Until the house sells, that is now the situation. The Council have a charge on the property but have only asked me to keep them informed of progress. There will be a small amount left eventually, I did the best I could for my mum, and luckily found the right home. I hope you have managed to find the right place and haven't allowed them to rush you, or your mum. Finding the ICP option was a life-saver for me, even though without the sale proceeds it never did happen but having it as my option gave me peace. Good Luck
  10. Squidgy1

    Squidgy1 Registered User

    Dec 22, 2014
    Google nhs continuing care. My mum gets it and the nhs pay the fees, my mum has money and property with my dad but this isn't even asked about if she qualifies.

  11. mamano

    mamano Registered User

    Oct 6, 2011
    I was in exactly the same position. You will find the SS use categories which the inspectorate don't! If you have LPoA then it is you who is responsible for an appropriate placement subject to the new home confirming that they have undertaken an assessment of needs and can meet this in your mothers current state. You have a right to a copy of this and those undertaken by a district nurse, SS etc. And formally question their assumptions/ assessments. Your mother may benefit from being in an environment which is more comparable with her condition i.e. not with those with the advanced condition. With your mother in an advanced condition, how much (additional) confusion would another move actually make? And, she would have the real benefits of staying longer in a more lucid environment. SS could but are unlikely to challenge your decision.
    I have had some very bad experiences with care homes. A dual registered home can "upgrade" your mother and thereby receive an increase in fees from her/SS. Hence, there is an inbuilt incentive which you would have difficulty in defending because the home's needs assessment would determine that they could not cope given her current entitlements. I tried to reverse this (because in reality they were evicting my mother on the day I reported failures to the LA enforcing authority) and they had the final word (but only in this matter!).
  12. CY505

    CY505 Registered User

    Feb 17, 2012
    Care Plan/Annuity

    Our experience was similar to Rural Mouse, it is worth seeing if you can buy an annuity with the money from the sale of the house. You will have to pay a fee for the financial advisor, as I understand it, and the viability of it will depend on the value of the house and also your mother's age and state of health, but it does leave the control with you. Mum went into a home in December. It was a residential home with a EMI wing, and it was extremely good. She had thrown things at a home carer but as far as we know didn't do this in the CH, she accepted others' right to be there as she never had in her own home, but she certainly had no idea it was a CH. She was 90 but in excellent health physically, and a nursing home would have been inappropriate. We put the house on the market and prepared to buy the annuity as by this time she had about 30k in savings, dwindling rapidly. We had some third-hand advice from a GP to wait six months if we could as in his experience people going into a home either die within six months or live for years. A week before the six months was up Mum got very sick suddenly and died in two days. I hope this helps someone making decisions at a difficult time, and wish Worrywort all the very best. Mum was always dead set against a home and we tried to respect her wishes for as long as possible, but in fact she'd have been happier if she had made the move sooner.
  13. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    We had a quote for a care fees annuity where the capital cost of buying the annuity was about equal to 4 years of care fees for my then 88-year old mother, who had severe mobility problems but no other serious illnesses apart from her dementia. We were still weighing up whether we should do this when she took a turn for the worse, and the specialist IFA we were using herself recommended we should wait and see if her condition stabilised. It never did, and she died about 4 months after moving into residential care (so very interesting to compare with your GP's comment).

    I would certainly recommend getting some specialist advice from someone who has specific qualifications in finances for older people. If you do get a quote, do not under-estimate the extent of the medical and other problems when you fill in the forms!
  14. kathymaggy

    kathymaggy Registered User

    Mar 22, 2015
    Bury, Lancs
    Attendance allowance

    Just a thought. If your mum is self founding she could be eligible for attendance allowance, around £80 per week.

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