1. City Claire

    City Claire Registered User

    Nov 1, 2004
    36
    Oxford
    All I seem to do is 'ask' at the moment! When Mum and I saw one of Dad's docs yesterday we talked about the fact there were only 2 EMI homes 'locally' and I asked if the way Dad has gone downhill has changed his needs. (We've also made it clear we'd ideally like somewhere close to where Mum lives if poss so she can visit without me as I'm 50 miles away). Dad's needs have now been reassessed as being for Nursing rather than EMI Nursing (I think partly on the basis of his lung cancer, angina and what seems to be gastritis from taking aspirin), which gives us more options to look at locally. We did take the plunge and visit the closest EMI home on Sunday before this happened and neither Mum nor I were sure about it, most of the residents seemed far more mobile than Dad who can't walk at all at present and needs alot of personal care/encouragement/help to eat and drink and take medicine.

    One of the things I'm now worried about is what if Mum and I see all these nursing homes and the other EMI one that has been mentioned and end up feeling that Dad would be better off with one of the EMI nursing homes after all. I feel like I've maybe forced this change in the situation. Also have I messed up on the finance side for Dad (I think he'll be self funding initially)? I think they are trying to help us have more options but at the same time am wary of having the best for Dad of course.
     
  2. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Claire, Ask both the Nursing and EMI homes if they have nursing staff qualified to deal with these problems. They usually do. Make sure your father's needs can be catered for regardless of the type of home. If you do all your worrying up front, share it with the homes and SS, then it is less likely that you can make a decision that is not thought out. My Mum was self funding until the last month when they decreed she was terminal, (so SS paid for the home care) but even then, had she rallied for any length of time she would have been re-assessed as self funding they told me. Just get what your Dad needs, worry about the finances later, thats how I coped. How is your Dad today? and, how are you and your Mum? Love She. XX
     
  3. City Claire

    City Claire Registered User

    Nov 1, 2004
    36
    Oxford
    Dear Sheila

    Many thanks, that's what my gut instinct is to do (and I think Mum's) find somewhere we are happy with for Dad and then sort out the financing. The social worker has said she will help us sort a contract out etc. even if we are self funding which I gather she's not obliged to do. They've also given us a list of 4 non- EMI nursing homes local to Mum they thought we should try with a (obviously officially non-existent) recommendation for one, so we have something to aim for.

    We had a rollercoaster weekend - I've seen that as a theme on the board I think! :) - I didn't tell Mum about the resus discussion until Sunday, so she could have a relaxed Saturday. We went out for lunch, did a little bit of shopping and then to see Dad in the afternoon. I got him to put his dentures in after about 15 mins persuasion when we got there and he ate a kitkat and a little bit of banana, and drank some medication. We spent over 2 hours with Dad with was good. Our Sunday afternoon visit wasn't so good I'm afraid with Dad very tired and not really very interested in much, not able to raise his head very much at all, but we left a radio tuned to classical music so he can have some music on for the times when he's on his own.

    Monday morning (before we saw the doc) was different again with Dad much brighter after having a drip the night before and he took the butter knife I had bought in to cut up banana for him and started cutting it up for himself and eating half of it with some help/encouragement. He had a little bit of cereal and kitkat and marmalade sandwich too - and drank a cup of tea himself - I'm sure he must get fed up of people going on at him to eat and drink!

    When I spoke to the doc yesterday she said Dad was quite bright that morning, but I'm afraid when Mum went in the afternoon he was very tired again and pushing things away, no dentures in - obviously Mum was upset (she knows it's the v. dementia etc. but still feels hurt - I think she felt Dad just thought she was another 'nuisance' yesterday). I don't think she's keen to go on her own again at the mo'. I'm going to ring up and find out if they've managed to put his dentures in today - it's very worrying knowing he can't eat without them in. And he doesn't seem to let anyone else apart from us help him eat.

    Sorry to go on, better do some work altho' I wish I was with Dad rather than here!

    Claire x
     
  4. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Claire, what you describe is often the case I'm afraid and rollercoaster is a very apt description. All you can do is like Norman's always saying, take a day at a time. It's a hard, rotten time for you all and my thoughts are with you. Love She. XX
     
  5. Chesca

    Chesca Guest

    Dear Claire

    Don't apologise for 'going on' as you put it. Sometimes it is only by getting it out of your system that you clear some of the knots in the ball - recently put to me as a 'brain like a mad woman's knitting basket' by somebody very important to me, and perceptive to boot!

    You seem to have a wonderful Social Worker, working with you as opposed to agin and that has to be a plus plus.

    Can I just say something that you might not want to hear, and I say this only because I went through the teeth bit (no pun intended) myself, when Mum lost and subsequently refused to wear a small palate I had hitherto not realised she wore - such was her privacy and self-respect in such matters. We decided that it was us, for reasons of vanity, who wanted the gnashers back where they should be, in her mouth, not discarded wherever she offloaded them. Her gums had shrunk such as to make it so uncomfortable and attempts to rectify this, a new impression by the dentist, were so horrendous as to render the possibility a no no. It took some getting used to but in the overall scheme of things was not such a monumental failure - she still manages to eat quite well most of the times, pork scratchings excluded but she never did like them anyway!!

    It's just another letting go - AD is sufferer led unfortunately despite the very best of our loving efforts. Which is why you and your poor Mum feel devastated by his perceived rejection, I suspect. Hold on to the fact that he is still there, the loving husband, Dad - not in the way you, any of us in fact, would want but still there. I love that you left him listening to some music. He is a very loved man and somehow you will hold together because that's what love does - emotional superglue

    And now it's my turn to apologise for going on.............
    Lots of love
    Chesca
     
  6. City Claire

    City Claire Registered User

    Nov 1, 2004
    36
    Oxford
    Hi Chesca

    Many thanks, I really appreciated your reply to one of my other posts too, you have a great way with words! :) I see what you mean about the dentures and I know what you mean about us holding on to things when it isn't necessarily best for the person we care for or doesn't matter so much to them. We'll see how we go ... I think some of the time Dad's actually having trouble remembering how to put them in now ... but will let him and how comfortable he is guide us. He does still seem to enjoy eating with them in so far.

    Drove over last night and saw Dad with Mum, he was in bed but fairly cheery and seemed to know us - we both got called 'lovely' which was wonderful! It's amazing how much pleasure sitting and holding someone's hand can bring. Mum was really pleased to see Dad brighter after her last visit. I was so pleased I went.

    The nurse we saw last night is lovely and she explains things to us well, they're trying to manage pressure sores by keeping Dad 'moving' from bed to chair etc. with air cushion/mattress on a fairly regular basis. He's been sliding out of chairs I think, they had an amazing looking chair/contraption there yesterday in his room which seems to rise up, presumably to help the move from chair to bed and vice versa.

    Our social worker has organized for 3 homes with vacancies to assess Dad and we are going to see them at the weekend, fingers extremely tightly crossed! There's one which seems to be the 'recommended' one which is on a bus route for Mum, so she's obviously really keen. I'm a bit concerned about the 'medical' side of the care once he's moved to a nursing home, it seems it will just be the GP - whereas before Dad's had a consultant involved for his lung cancer and v. dementia.

    Oh I am queen of the goer oners!

    Thanks again.

    Claire x
     
  7. Chesca

    Chesca Guest

    Dear Claire

    Good luck for the weekend and let's hope you find just the place for Dad. I'm sure, together with help from your Social Worker Star, the assessments by the nursing home staff will enable you to make the right decision. They should be fully armed with all of the facts, and don't forget that whilst there will be no consultants available in the nursing home there will be Registered Nursing staff with immediate access to necessary doctor assistance - at least the good ones will, and will also be prepared to put all of your minds at rest - or such as they ever will be.

    Isn't it just part of the AD rollercoaster! - down you go, and whoosh you're uplifted by the surprised comment, a smile - just when you thought you'd never smile again. I reckon your Dad has got it just about right, lovely.

    I'll be thinking of you
    Chesca
     
  8. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Claire, glad things are moving a bit for you. Chesca has a good point there about the teeth, my aunt doesn't have a tooth in her head and eats what ever she wants although she says nuts and apples are a no go area! Good luck at the weekend, love She. XX
     
  9. City Claire

    City Claire Registered User

    Nov 1, 2004
    36
    Oxford
    Hello All

    Thanks Sheila and Chesca for your messages, we had a mixed time looking at nursing homes. The first 'home' we went to on Sat had me leaving with the phrase 'over my dead body' ringing in my ears! The second was very nice in many ways and we had a long chat with the matron, but they've decided they can't take Dad because they have so many people who need help/supervising with feeding they would need an extra member of staff if they took him. The third which we liked best (altho' the door seemed 'open to all' with no one checking who came in at the time we arrived), is hopefully a possibility (they're not assessing Dad until later this week) - it's on a bus route for Mum and was 'recommended' by one of Dad's doc's as the nicest out of the three. It was clean but had a homely kind of atmosphere, it's quite small and the staffing levels seem quite good (although they never sound like enough to me!) and we got alot of information about how people are monitored and activities, Dad being able to have some of the foods he likes. There isn't really much of a garden but a small area with benches, just near one of the entrances. The view from the room was OK looking onto some 'green' and the back of a few houses with small gardens.

    I've read all the inspectorate reports and there was one thing on there I wanted to raise about management of pressure sores not always being followed up properly. Also they don't have a seat with an air cushion just the other type of foam cushions at present, but they have air mattresses - so we'd have to get that sorted I would have thought. They seem to have had quite alot of inspections - they had a notice about another one on the door. Their 'policy' statement and menus were on tables near the door so you could see them.

    I am feeling quite guilty that we haven't looked at more places (we've seen 4), but on the other hand know there is only one vacancy at this home and that it is going to be the most convenient for Mum to be able to get to independently when I'm not around (i.e. in the week).

    I did some financial stuff on Sunday evening after seeing Dad for a few hours with Mum earlier - I just get so stressed by the end of each weekend at the moment! Dad seemed quite cheery (enjoying the music on the radio and giving us a little whistle!) when we saw him and he's been drinking quite well apparently if not eating so much, he was 'chatty' for him which was great and really pleased Mum. But his bottom dentures which weren't in were dirty and had been left in some dirty water (cleaned them and Dad seemed happy when he'd put them in) and his finger nails are getting stuff under them and looking a tiny bit orange, which I forgot to mention, do that later when I ring to see how he is! I'm worried 'cos Mum and I might not get to see him before the weekend, once a week just doesn't seem like enough to check he's getting on OK.

    Still I mustn't let anyone get the wrong idea, I am doing 'selfish' things too - I was off up to London last night to the Festival Hall for a concert - I thought I would be too tired but my husband really wanted to go and it was lovely, I always think London looks best with all the lights showing off just the best bits at night!

    Sorry to have gone on again, but I did need to I think.

    Claire
     

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