1. Rhoda

    Rhoda Registered User

    Mar 15, 2007
    West London
    I have been looking after my partner of 35 years at home. Looking back, Alan has been going a little odd mentally for some years but this has not been apparent to outsiders, though I have been anticipating AD for some time - my mother suffered from it for some ten years so I recognised some of the signs. (She was looked after brilliantly by my father, also in his eighties/nineties, who was a resourceful and devoted husband.)

    I had mentioned to our GP that I was worried about Alan and his memory problems as he is a Type 2 diabetic and might be forgetting to take his proper medication. The GP talked with him and consequently referred him to the Memory Clinic of the community mental health team. At the end of January this year Alan had a fall in the street, was helped by kind strangers and taken to our local hospital. Following on from that and the GP's referral he has had many investigations: a long consultation with the Geriatric consultant, psychiatric assessment, Occupational Therapy assessment, Speech and Language therapist, CT scan, ECG, MRI, plus EEG to come soon. I cannot fault the attention he has had from the NHS. It seems that in addition to developing dementia he has probably had a small stroke. This means that in addition to his previous mental problems he now has extreme difficulty finding words and completing sentences, and physical problems with walking and eating, dressing, washing, etc. Not to mention problems with getting to the loo in time..... And a number of falls, mostly overbalancing backwards and ending up like a sheep with his legs in the air. This has all been possible to deal with, though his abilities have been gradually decreasing.

    Now the situation has worsened. On Tuesday, the day before yesterday, we had an appointment with the OT and went there and back by minicab - it's only about seven minutes' walk away, but too much for him to walk now. He managed with great difficulty to get out of the cab and to our front door, then it was a big struggle to help him up the single flight of stairs to our first floor flat. At the top he collapsed in a heap. I tried for a long time to help him up, but he's quite a big chap and though I could get him to his feet briefly he immediately collapsed over to his right side and could not be persuaded to walk. After a rest for both of us, I hit on the idea of using a large towel rolled up to make a sling under his arms which made it much easier to lift him and hold him up. (This is my Top Tip for the week and I'm rather proud of my invention!) So after over an hour of struggle I got him on to the sofa in his usual TV-watching seat. And there he was stuck all evening and night. I had hoped that he would be better after a night's sleep, but he was just as helpless in the morning. I realised that I could not cope: a night on the sofa is a possible - with "breakfast in bed" and a handy pee jar (I can recommend an empty Candarel jar) - but not for longer. So I called an ambulance, stating that this was not an emergency. They came very quickly, were sympathetic and helpful, got Alan down the narrow stairs with some difficulty, and we were in the local hospital A&E within an hour of my phone call.

    There he was triaged, assessed by doctor, lots of tests, assessment by another doctor, and kept in overnight. They think that antibiotics to treat possible chest infection may help his general condition.

    Sorry about that very long background story, but if you're still with me, here are my current problems:

    If Alan can't walk at all I don't know how I could look after him at home. We live in a smallish one-bedroom flat, the upper storey of a terraced house. I own the whole house so we could possibly move downstairs to the lower flat, but that doesn't solve immobility within the flat. In either flat we have a living room, bedroom, small bathroom, and kitchen.

    The doctor last night expressed surprise that I had not been offered any care help so far, but in fact this is not surprising as things have moved at such a pace since January and the situation changes day by day. I am not sure how carers coming in would be able to help.

    I have to face the fact that Alan may have to go into some sort of care, though a few weeks ago he asked me out of the blue not to send him away, he wanted to stay at home. I know nothing yet about care homes or nursing homes and I know I have a lot of homework to do.

    Finances: We chose not to marry, though free to do so, and have always kept our finances quite separate. He has his state pension and a very small work pension. I have the same, plus some savings and income from capital which puts me above the various "means tested" benefits - and therefore also excludes Alan as a partner who lives "as if married" to me. He is 77, I am 67. I do know about Attendance Allowance being not means-tested and may apply for it.

    I don't yet know how finances for care homes work - when fees are payable and whether I would be responsible for Alan's care. That would soon take care of my "excess income".

    I was planning to get him to make a will and do an EPA but I think the moment may have passed. He now has great difficulty signing his name, even with me dictating the spelling of it. Though interestingly enough, his bank has accepted his current signature on cheques, scrunched up and unrecognisable as it is. He had made a will long ago but this will now be invalid due to his divorce thirty-four years ago. He had two children, now grown up, but has no contact with them now.

    Well if you've got this far reading our autobiography, thank you very much for your patience. Any advice on what next will be welcome, particularly on the legal effects of not being married. So far the hospital has always accepted me as next-of-kin (though with no proof except my say-so). On a happier note, during one of the endless memory tests last night the doctor asked him who I was and he replied "she's my sweetheart".

    Now I must get back to duty and contact the hospital to find out what's next. Fortunately it's just a short walk away.

    Regards to all. Rhoda.
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hello Rhoda - thanks for telling us your story.

    First question from me is - have you contacted the Alzheimer's Society Help Line? http://www.alzheimers.org.uk/About_our_work/Contact_us/helpline.htm
    Some brief thoughts from me.

    First, take things slowly. Judge options, but take time to do so - such time as you may have.

    I can't be sure from what you have said whether Alan has actually been diagnosed yet..?:confused:
    I'd definitely be suggesting asking the Help Line about this. Initially I thought I knew the answer [No], but then I wasn't so sure about joint assets etc in your situation.

    I have to say it is not really clear to me in a situation of being married!

    My Jan's ability to make a signature was already compromised when we did her EPA, but she was still able to say she understood what was going on, and that was enough.
    do hang onto these moments!

    I think you've done an amazing job so far, just make sure you take care of yourself as well!

    best wishes
  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Rhoda

    Thank you for your post, and from a personal point of view thank you for spacing it out. It was no problem reading to the end.

    Your situation is similar to mine in many respects, Alan sounds to be at a similar stage to my John, even to the recent fall!

    You do have a problem living in a first floor flat. John still manages our stairs, but I have in mind the possibility of a downstairs conversion. If you can move to the downstairs flat, I think that would make lif easier. Otherwise, it may not be long before Alan can't get out at all.

    You should apply for attendance allowance at once. You are entitled to the upper rate, as you have to give him care at night as well as day.

    You should also contact social services and ask for an assessment for Alan, and a carers assessment for you. This will open the doors to carers coming in to give you a break, day care, respite care, occupational therapy assessment to see what physical aids can be provided, incontinence aids, etc. Bear in mind that you don't have to accept what thay offer. It is up to you how much help you want, but I have found it reassuring to know that help is there when I need it.

    I'm not going to go into the financial and legal problems you mention. John and I are married, and there are people on the forum who will be of much more help than I could be.

    I wish you all the best. It's hard, and you should get all the help you can.

    Let us know how you get on.

  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    #4 Margarita, May 17, 2007
    Last edited: May 17, 2007
    I do hope they sort that out soon , My mother also has diabetic and all those sytems (sp) of falling walking, ones I got her medication under control her walking improved and the falling over not so much this was befor being told she had AZ , get all the care surport you can , talk to OT , because all that lifeing your partner is going to do your back in , did mine

    I don’t think they would take your saving into consideration when they do a care plan assessment on you partner income, if your saving is in your name, as your not married .
  5. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    Hi Rhoda,

    Just a quick point on the legal stuff. Although marriage automatically revokes a will curiously divorce doesn't. The will remains valid but the ex-spouse is treated as if they have died. If for example your partner had left his estate to his (then) wife but if she had predeceased him to his children, then his estate will pass to his children. If the will had been revoked and he were to die intestate (i.e. without a valid will) his estate would also likely to pass to his children so I'm not sure it makes a huge difference in your case.

    I t does sound as though it may be too late for him to make a will now, but may be worth making enquiries of a solicitor. The test for testamentary capacity basically is that you know what assets you have, the value of those assets, who your family is and what moral obligations you have to them.

    If your partner was unable to make a new will and you wished to challenge the distribution of his estate under the old will or the intestacy laws, you would be able to make a claim (after your partner has died) under the Inheritance (Provision for Family and Dependants) Act. Unfortunately there is little you can do now.

    'Next of kin' is not a legal concept although often used by hospitals. My understanding is that as his partner you will be treated as next of kin but maybe someone else has more experience on this point.

    I hope you find lots of support from the various agencies as well as here on TP.

  6. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Dear Rhoda, welcome to TP.

    I would echo what Hazel has said: apply for attendance allowance ASAP, and when you're filling it in, do not hestitate to put in the worst case scenario rather than the best case - from what you say your partner should definitely be eligible for the higher rate.

    One point I did want to raise: I was under the impression that a divorce did NOT invalidate a will - marriage yes, but divorce no.

    I have a sneaking suspicion that even though you are not married, you will be treated as such for the purposes of calculating any mean's tested benefit. Definitely, property disregard (which operates when one partner has to be placed in a care home) does not distinguish between married and unmarried partners. On the other hand if your partner was receiving a larger pension, unmarried partners do not have the option to pass on half of that pension to the other partner and have that amount disregarded, which would be the case if you were married, so the rules aren't entirely consistent.


    This factsheet from age concern about paying for care when you have a partner indicates that partner can mean married or unmarried. However I believe (repeat believe) that your savings in your name will not be counted - however the guidance on this is fuzzy - if the situation was reversed and your partner had the lions share of the savings, it would be possible to ask (not necessarily get, but ask) for some of those savings to be disregarded in order to mainting the "stay at home" partner's standard of living. I suspect the LA will try to get a contribution from you, but I do not think they are entitled to it, and it's up to them to prove that they are.

    Is it possible that your partner could be eligible for Pension Credit? Many people are, but fail to claim it, so it might be worth looking into.

    Best wishes


    Edite to add - I see I cross posted with Sue, and she covered the will issue.
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Rhoda,

    You post was really interesting, it`s so helpful to have such a comprehensive `autobiography`, so please feel encouraged to continue.

    You have received a lot of excellent advice and I`ve nothing further to contribute, but I wish you well, hope to hear how you get on and hope all the contacts you`ve been directed towards can provide constructive help.

    Take care
  8. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    The only thing that I know regarding next of kin is the definition of "nearest relative" for the purposes of mental health issues. In your situation, having lived with your partner for more than six months, or alternatively living with him as his carer, you would be his nearest relative for the purposes of the act. Irritatingly, because I live overseas, I am NOT my mother's nearest relative, even though I'm her ONLY relative, which is how I came across this.

  9. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    I forgot to mention that if it is too late for your partner to execute a will and/or EPA, you can apply to the PGO to be appointed as his receiver. Once the receivership is in place the court does have the power to make a will on the part of the patient. However I have never made such an application so cannot say what the process is like and how successful it would be.

  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    who saw desperate housewife , woman married to husband for 35 years , husband dies , when wife finds will in the house she reads that he has not renewed the will after he married second wife so all his money is left to his first wife .

    So she puts his body in the freezer :eek: , so starts taking all money out of his bank bit by bit , till a young boy find husband in the freezer and the story unfolds
  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Fiction I'm afraid Maggie. If he had remarried his first will would be automatically invalidated. He would die intestate, I would imagine.
  12. cris

    cris Registered User

    Aug 23, 2006
    Rhoda. You are brilliant, but check the legalities,
  13. Suzy R

    Suzy R Registered User

    Jul 4, 2004
    I would check about the whole will / EPA thing with a solicitor. If Alan can express his wishes verbally there may be some other way.

  14. Michael E

    Michael E Registered User

    Apr 14, 2005
    Ronda Spain
    Just want to say that I think Sue38 has posted some very good sense... It may well be that Alan is not if fact too far gone to sign both a will and a POA...

    The demands made on the concept that the sufferer is incapable are pretty high.. Quite a thing to say that somebody is totally incapable of making a decision affecting their own lives at all... The state they have to be in to be totally incapable is very bad indeed and it does not sound like Alan is that bad... Lots of people with arthritis have trouble with their signatures etc etc...

    I would urge you to find a 'good' friendly, patient and understanding solicitor and make all hast to get the 'paperwork' sorted for Alan and yourself in the simplest way. A will and an EPA....

    There are lots of very greedy bad solicitors around, possibly more than there are good ones and if you find the first solicitor you have chosen is making mountains out of mole hills and appears to lack understanding then pay them off and find a better one.. They are just people running small businesses... In fact you could almost certainly do the POA yourself - the majority of people on this forum probably have done that - including myself - and a simple will, leaving everything to you or what ever Alan wants to do with his affaires, is easily available on the Net with instructions on how to witness it etc legally... The DIY route is actually quite simple thanks to new legislation - could be worth considering - even starting off on....

    Sue38 will correct me but I am certain that you have no responsibility at all for the financial future of Alan.. It is for him to find the money for his health problems and if he cannot then the state will and indeed should. I know of other people on this forum who are using their partners money for the best possible care they can get for their sick partner for as long as the money lasts ... then it will be up to the state...
  15. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Will was changed

    My mother had her will changed after she was diagnosed with AD. Her diagnosis was when she was already fairly well along in the disease, also. The lawyer we took her to asked her what she wanted to do with her money, who she would leave it to etc. As she knew who my sister & I were then, it worked out very well.

    My understanding (and I may be wrong here) is that a person is legally competent until officially declared otherwise. That might help too. But definitely I would contact a solicitor.

    Good luck
  16. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    As we all know, people with dementia have good days and bad days. If on the day they make their will they satisfy the testamentary capacity test it will be valid even if the day before and/or the day after they would have failed. A diagnosis of AD is not an automatic bar to executing a will or an EPA.

    I agree with Michael that you can download the EPA form and sign them without using a 'greedy' solicitor ;) , but if there is someone who might challenge their mental capcacity, an independent person who can testify that the donor knew what they were doing and was under no undue influence will be invaluable.

    As Michael says a perfect signature is not required on an EPA. As long as the donor can make a mark that is fine. Even if they cannot make a mark someone else can sign on their behalf at their direction but then you need 2 witnesses rather than the usual 1.

    Neither a spouse nor a co-habiting partner is responsible for the debts of their other half, but their income will be taken into account when calculating their entitlement to benefits. Michael I think this answers your point?

  17. jude1950

    jude1950 Registered User

    Mar 23, 2006
    I was in a similar situation with my partner ,we have been together for 10years and he was diagnosed with Alzheimer's a year ago.
    Initially we couldnt marry as his first wife was still alive and for a number of reasons they were never divorced. She passed away last year and we
    decided that we would get married. We asked the consultant and CPN what they thought and they said that there was no reason for us not to marry but to do it sooner rather than later whilst my husband still had competency.
    As the law stands we have the right to get married or make a will or EPA as long as it is considered that the person has competency.
    What marriage has meant is that my status as a wife is much better than just being a companion I am involved in all his care decisions and should he need to go into residential care the fact that he has a wife means that not all of his pension would be taken to cover care fees.
    I would add that the choice of caring for him at home or putting him into care would not have been mine if we were not married, but would have or could have been influenced by his children from his first marriage two of which have very little contact .
    My advice would be for you to consult the legal section at the alzheimers association and check how you stand legally...There is no protection or rights under English law for unmarried couples no matter how long they have been together.
  18. Rhoda

    Rhoda Registered User

    Mar 15, 2007
    West London
    I apologise to everybody for not having replied earlier. I was overwhelmed and delighted by the avalanche of helpful replies I received and I am very grateful for both the very helpful advice on legal and practical issues and for the messages of comfort and support. I have read and re-read them many times and I am following up the various leads given. Thank you all so much.

    Alan is still in the local hospital. They have treated his dehydration and his chest infection with the result that he can now stand and walk a bit and has been annoying the nurses by getting up and walking around then falling. He was assessed by the Physio today, who decreed that he should not be allowed to walk, which means 24 hour watching and must be very frustrating for him, not to mention the lack of exercise. He is now officially doubly incontinent. His mental state has also deteriorated - he varies each day but last night he was restless and anxious, saying "I don't know how I can get home from here", and batting away my hand rather than getting comfort by holding it. That was the most coherent sentence for several days, and the saddest. It seems that he will probably have to go into care and the Community Mental Health Team are on the case. All NHS staff are being very helpful.

    Thanks and regards, Rhoda.
  19. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Rhoda

    It sounds as if things are moving very quickly with Alan just now. I'm sorry that he's probably going to have to go into a NH.

    Have you got the finances sorted out? There are some very knowledgeable people on TP and the AS legal helpline will give you good advice.

    I'm glad you're finding NHS and SS supportive, so many people have bad experiences with them, and it's important to hear the good reports too.

    Thanks for the update, and good luck,

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