1. Hilary

    Hilary Registered User

    Apr 17, 2006
    18
    Oxfordshire
    Uurgh... where do I start.

    Well, I last contributed here some time back in March, I think, and now it is September, so that'll give you some idea of what sort of a year it's been so far. :rolleyes:

    A reminder in brief; my father has Alzheimer's and my step-mother had terminal cancer and was expected to live no longer than August this year. In fact she had a stroke and passed away in June, much to her relief, I think, as she was really finding life difficult and painful. She made me an Executor of her Will, but also left me as principal carer for my dad. In between caring for him and my son in Bournemouth who's just moved into a new flat, I've also done all the administration for the funeral, the wake, and distributing some of the effects my stepmother left among her relatives and I don't know which task has proved the more daunting! :eek:

    My father, bless him, is very much in the doldrums for a lot of the time. He's 87 and struggling with both his loss and his disease, and is now also having dizzy spells. He has a CPN, and someone visits him every day in the morning, but he also has an active social life and plays bridge three times a week. We've kitted him out with a Lifelink pendant alarm system, but I called the other day unexpectedly and found he wasn't wearing it, in spite of big notices everywhere reminding him to do so.

    I'm now getting very worried. 86 miles and two hours remote from the immediate vicinity as I live in North Oxfordshire and he lives in East Hampshire, I feel out of contact with those who are supposed to be helping him. I go and visit him as often as possible, but the academic term starts in about three weeks, and I will only be able to visit once a week on my day off. To say that it's beginning to take a toll on me is a bit of an understatement, but I don't want to move him from there before time; he has a good life with his social contacts and the church in a small community where he is known; the taxi drivers know him and won't take him for any sort of ride other than the ones they are supposed to, and he has his cooked meal every day down at the pub where he enjoys a healthy banter with the landlord and his wife, who are a lovely couple. Practically everyone in the community has my telephone number in case of emergencies, but I still feel as though the Sword of Damocles is hanging over my head.

    I haven't even begun to look for accommodation for him close to us; I don't know even what sort to look for, whether sheltered, wardened, nursing or what... I have no previous experience of dealing with Alzheimer's Disease, and no benchmark to say where he is presently or how far along the road to complete senility he is. He still looks after himself pretty well; he toilets himself and although sometimes incontinent he also does his washing and pegs it out on the line afterwards. He still holds a good conversation, although he does forget what he's said a lot of the time.

    We sold his wife's piano a few weeks ago and her car yesterday, and on both occasions he cried a little. I love him to bits, but I also feel like I'm falling to bits worrying about what to do next, and where to turn to for help on a cross-border situation like this. To add to the confusion, his wife didn't leave him the house, but the right to live in it or any other accommodation (excluding care) bought from the proceeds. He has a pension of about £1200 a month, and his assets mean that he would have to pay for any care he might receive until such time as his careful prudence is reduced to (what is it now?) £12,500. So would it be fairer to keep him in his own home and his own surroundings, and employ a care firm to look after him there, or to move him into strange surroundings where he wouldn't know anyone - a factor which will become inevitable, I guess, but isn't at the moment.

    I'm totally at a loss to take the next step; I don't know what it is! :confused:
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,429
    Dear Hilary

    I don't know quite what to say: you really have/have had a lot on your plate. So I'll deal with some practical issues first. 1) Have you applied for attendance allowance yet? You should do if you haven't: at 87 he is almost certain to get the lowest level of enititlement without any problem at all, and even if he doesn't use it for care, it might make things a little easier. 2) Have you applied for a disregard for council tax? As a sole occupier with a mental disability he will be entitled to pay 0 council tax. 3) when it comes to paying for care, the current rules are as follows: pay for everything until he's spent down his savings to £21,500. From £21500 to £13000 you are assumed to have income of £1 per week per £250 of capital (I wish!).

    Future care options: well how long is a piece of string? I agree that it would be a fairly bad idea to move him at this stage of the game: he has a support network in place (even if you don't feel it isn't entirely adequate) and that's not to be sneezed at. Most people end up in a residdential facility when they are no loner safe in their own home, wandering at inappropriate times being one of the biggest problems. In your situation I would be inclined to keep him there as long as possible: I would be inclined to try an avoid what would necessarily be an interim move to sheltered or wardened housing, as these options are not really set up to deal with dementia sufferers. You might like to look at one possibility in this area though: extra care or very sheltered housing. many of those wouldn't take your father with his diagnosis but some might. They generally have carers on tap as well as the sort of facilities you might expect to find at a hotel: laundry, meals etc. My mother was in one of these, and only the fact that she became completely non-weight bearing necessitated a move to the nursing home (which was on the same site and had the same carers).

    Incidentally, my mother would never wear her alarm pendant either. To be honest I think these things need to be redesigned so that they are the size of a wrist watch and can be worn all the time (even in the showere): that way people wouldn't take them off and then forget to put them back on again.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,146
    Kent
    Dear Hilary.

    For someone of that age with Alzheimers, your father sounds wonderful.

    Would it be possible to get more home care for him, say three times daily. And would it be possible for the carers to ensure he wears his Lifelink pendant?

    If he is a well known, and probably well liked member of his community, it would be a shame to move him and curtail his freedom and independence, but I `m sure he would benefit from more care at home.

    Love xx
     
  4. Hilary

    Hilary Registered User

    Apr 17, 2006
    18
    Oxfordshire
    Thanks for your replies.

    Yes, my dad is wonderful for his age - it's me that's wearing out fast! :eek: As you can tell from the time of writing, Im not sleeping all that well and am worrying about the situation quite a bit. Fortunately I only have a part-time job - I don't think I could cope with a f/t one atm.

    Yes, my dad gets attendance allowance, but I don't like to ask him for a share of it. When I go down there he does feed me at the pub! - so it's as much of a social occasion for me too. He's also got the nil payment of Council Tax - that's one of the first things that kicked in for him - thanks to the CPN telling me.

    I've thought for a long while that the best option for him to is to look at care at home for him. He lives in a house which has two bedrooms, and a room downstairs with a single bed in it, so he could have 24/7/365 care. My biggest fear is that he would not receive adequate care - you hear such dreadful stories now. My next biggest fear is that it will be more expensive than paying for residential care - any ideas on that? :(

    I suppose really that I ought to do more research on the subject - finding the the time is another thing, though. Not being in the same county is another drawback, and being totally disorganised at the moment is another! :D

    I've asked to get him care more times a day at home, but the people calling in on him once a day won't do it every day because of his going out to play bridge in the afternoons three times a week, twice in the afternoons and once in the evening. I've got no intention of telling him to stop that so that he can have more care visits, but then I think suppose he falls and hasn't got that ruddy pendant on....

    God, I thought my son was a worry.... :rolleyes:
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,146
    Kent
    Dear Hilary

    Why on earth can`t your father have home visits every evening except one, and every lunchtime, at a time fixed before he goes out, so it can be checked he`s wearing his pendant.

    I presume the visits are from SS carers and he pays for them.
     
  6. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,429
    The problem is with 24/7 in-home care is that you don't need just one person: you need several. I know someone who has just that and he has 2 day time and 2 night time staff who rotate in and out. Plus, a friend of mine manages those rotas for him and keeps a watchful eye on him AND does all the paperwork. That in itself is almost a full-time job. True, you might be able to do it with fewer people, depending on how much "care" he actually needs, but it is both difficult and expensive. However, residential care is also expensive: depending on the area and the type of facility, it ranges from £500 - £800 per week.

    I agree with Sylvia: I don't see why carers can't come at different times on different days: it's not that unusual for people to need more visits daily during the week than at weekeneds, for example, particularly if they live with family who work during the week.

    You know, it's easy for me to say, because it's not my parent, but I would try NOT to obsess over whether he is or is not wearing that pendant, for the following reasons. I was in a similar situation to you, only further away (I'm in the US and my mother was in the UK) and as I said, she rarely rememebered to wear the stupid pendant. However she did have several falls, some of which occurred when she was wearing it. Did she press the button? Did she heck! The problem with this sort of device is that it requires the person, who is already distressed by falling, to remember that that thing round their neck is there to help them, and that was just not doable for my mum. It's not a happy thought, I know, but my point is that while these devices are great for someone who will use them, sadly for many of our loved ones, knowing when to press the button may be too big a stumbling block, and the support such devices give may be, at best, illusionary. Similar things can be said about many other technological solutions.
     
  7. Clive

    Clive Registered User

    Nov 7, 2004
    716
    Hi Hilary

    Your dad’s lucky having a daughter like you.

    I did 120 mile round trip caring (which was not as difficult as yours). I still remember the day when the assistant in Mum’s local Fish and Chip shop confided in me that she thought my mum was so lucky that I was able to Care for her, because she could never get to help her mum, as she lived 4 miles away…(on a direct bus route).

    On the basis that every bit of knowledge about how others worked around the concerns can be helpful I write the following.

    I slowly worked up to having Carers in three times a day. (Never contemplated having 24/7 care though this might have been a good idea).
    Social Services just gave me the telephone numbers of private Care Companies and, off the record, listed them in quality order.

    I found that the supervisor at the Care Company I chose started writing up their schedule of which employee would do what on the Tuesday of the previous week. So each Monday I emailed the supervisor my own schedule of what time Care was required for the following week. (Red letter Care for the rare occasions where the time was mandatory, black letter Care when I could accept care within an hour or so each way, and a note of what mum was doing at other times so they knew what else was happening on any given day because different employees had different skills). I just re-dated and amended the computer file from the previous week to save typing. This meant that my visits to mum, hospital appointments, friends & family visits, volunteer carer visits, and other trips out with voluntary organisations could all be done at times when paid for Carers were not visiting. It worked well. I gave plenty of praise, and the supervisor almost became a family friend. In return I got a schedule of which named Carer would be at mum’s house at what time and on what day. Now and then I would ring on some pretext and have a little chat with the Carer just to let them know I was around.

    I was very lucky in that the company I used was an offshoot of a religious order (not my religion) and the Carers were nice. One day I said to the Supervisor that sometimes all mum needed was for someone to sit with her so that I could stay at home and have some respite. The result was that some of the Care visits became classified as Respite, which was free of charge. I don’t know how prevalent this Respite Care is with other companies in other areas, but it is always worth asking silly questions.

    I also had a chat with the local office of the Alzheimer’s Society. Mum unfortunately didn’t have the social life that your dad has created for himself, and had no intention of going to the Day Centre. Silly as it sounds AS put my (88 year old Alzheimer suffering) mum in touch with a local Pensioners Club that was full of bright sprightly 60 year olds. They came and took her to their weekly meetings, and monthly trips out (a volunteer with her at ALL times to make sure she fitted in and didn’t spoil things for the other members), which not only got mum out of her home, but it reduced the amount of paid care that was needed. They also sent a volunteer round once a fortnight to have afternoon tea with mum. Marvellous. Real thinking outside the box. I would never have thought of it.

    I also had a Keysafe screwed to the wall by the back door (with my mobile phone number painted on it). There was then no excuse for the Carers not being able to get in if the door was locked as the head office had the safe combination. (Downside was that we had to remove bolts and door chain).

    I never used lifelink mainly because mum could not accept any gadgets that didn’t existed in her life previous to 1940. I relied on the Carers’ visits, and frequent phone calls, and the neighbours. (I did have a bag of cloths and a razor in the car at all times!)

    If you haven’t already, do ring Social Services in your area (the numbers in the phone book) and ask for a list of Care Homes with particular reference to EMI registered homes. You will then have an idea where they are and can keep your ears open to find out if there are any to avoid if you eventually need to make the decision to move your Dad. (I live right on the boarder of four areas so had to ring four different Social Service offices).

    Eventually we moved mum 300 miles to an EMI home close to my sister home. I worried about how she would fit in with people with different accents, but it all worked out fine.

    I have just emerged, OK, from the other side of the challenge you have accepted.

    You know you are doing your best so never feel guilty. (Easy for me to say)

    Hope my ramblings are of some help

    Best of luck.

    Clive
     
  8. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,429
    Clive, I just wanted to say that I am in absolute awe of the support network you managed to build for your mother.
     
  9. Clive

    Clive Registered User

    Nov 7, 2004
    716
    Yes jeniffer, looking back I am so so surprised myself.

    It was a combination of a lot of factors in my life and upbringing that luckily all came together. Plus the facts I had retired, did not have to worry about paying the mortgage, and did not get, or really want, any help from SS.

    I just kept pushing at the envelope and found I could keep making little improvements to mums situation. It was a bit like having a project at work. Thinking of it as a project also helped stop me thinking about what was really happening to the mum I loved.

    And of course luck played a big part as well
     
  10. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    I haven't read everyone's replies in detail, am not feeling well myself right now (chest infection), but my first reaction is to leave him where he is. Gosh, out to Bridge 3 times a week, eating at the pub, social life. Crikey what could be better? I appreciate your worries, but perhaps somebody on this website can tell me their relative actually wears the pendant? Most hang it by the bedside, my mother put it by the side of the main unit. Forget that. These wonderful units must be the most under-utilised of anything in the world.

    I wouldn't do much at all at the moment, but sensible to look ahead. Is he on medication? Is he taking it at the right time? That is one thing to sort out.

    People have mentioned extra visits by social services, worth looking into, though it sounds that at the moment he will be low priority for those.

    Care at home. Well, if you can persuade social services it is right for him, they do have resources to consider that, but you are correct in saying it is expensive, more expensive that a care home.

    My mother in law was physically disabled. She had a large house (well, no, not large, but a lot of small cottage-style rooms) and we did consider hiring someone to look after her, probably to get her up in a morning and put her to bed, and possibly deal with any night time crisis (possible incontinence). A divorced or single person would have been ideal. There were two attic rooms which could have provided a lounge/kitchen and a bedroom, we could have installed a shower room up there for a couple of thousand. My mother in law died before we got round to it, but I think it would have been ideal. No rental for the lady concerned (might even have suited a single parent, my mother in law adored children, there was a big garden as well, we could have made the main bedroom into two, albeit small), she would have provided her own food, perhaps made the odd meal for mum, could have had a job outside the house as well, and we would have thought about payment for the person's services. That would probably have been very affordable if we had got to that stage.

    Your dad's house doesn't sound that big, but think about it. He seems to be very independent and that counts for a lot.

    I don't want to sound wrong, but are you worrying prematurely? No harm in planning ahead, but perhaps he is best where he is at the moment.

    As said, didn't read it all in detail, ignore me if I've missed something.

    Much love

    Margaret
     
  11. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hilary, forget to say I know all about the academic term starting. I'm at a University, and mine started last week! Does nightmares for your planning.

    Keep in there, do what you can

    Love

    Margaret
     
  12. Clive

    Clive Registered User

    Nov 7, 2004
    716
    Cctv

    HI Hilary.


    I was concerned about mum falling, but she would never have worn a pendant. I was also concerned about asking the neighbours for help when mum wouldn’t answer the phone, thinking that they wouldn’t want to go round and check when I desperately wanted them to. (Remember the story of the little boy who shouted wolf).

    I started a feasibility study into installing a CCTV system into mum’s home and operating it over the internet. It looked very possible, and cost effective.

    Reasonable equipment could be purchased for the equivalent of keeping mum out of a residential home for six weeks. About £3,000 at that time. A lot less if you knew a computer expert.

    Running costs were not that high either. The quote was about £20 per month for a Broadband connection to mums home. A whole year’s broadband would have been paid for if I saved just two visits by car.

    I was a bit worried that the friends and carers might think it was a bit Big Brother but they were all enthusiastic.

    Unfortunately I let myself get tangled up in the details. Did I want sound, colour, how many cameras, inside and outside, how many frames per minute, should the pictures be recorded etc.

    But there were so many possible advantages, like watching for thieves and abuse, and having a direct tannoy system to get attention if the phone had been left off the hook. Just being able to check mum was OK 24 hours a day would have been great.

    I do regret not pressing ahead as I recon the system would have paid for itself in a couple of months.

    Try not to worry

    Best Wishes

    Clive
     

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