1. Zooey

    Zooey Registered User

    Hello! This is my first post, although I have been lurking a bit over the past couple of weeks. I suppose I had better start with the facts. My Mum is 84 and lives on her own on the top floor of a maisonette. My Dad died some 14 years ago. They were never people to have friends round, so now I'm the only one my Mum sees as I am an only child. I live some 25 miles away with my husband and 45 animals. (Yes - that was right - 15 cats, 15 ferrets, 2 llamas, 3 pygmy goats, 1 pig, rescued chickens and a fully grown green iguana in the attic). That little lot takes at least 5 hours a day to look after and much, much more at weekends. I also work 4 days a week, not far from my Mum. I'm about to be made redundant after nearly 20 years. The compensation isn't bad, but I don't know where I can find another job where I can turn up when the animals are done or leave early for a vet's appointment (I had another one tonight). I get my work done and do my hours over a period (I work flexi). I've also been working towards a photography exhibition in London for the past 18 months and although it begins next week, the whole process has been really draining. We get up at 5.30 in the morning and I've been working on the show or my web site until 10.30 or 11.00 every night without fail. I'm also about to hit 50 and going through the menopause (or at least I think I am - I don't even have time to think about it really). I'm also disabled following a riding accident many years ago which left me with a bad leg and my hearing and balance aren't good.

    My Mum isn't in the best of health either, with heart and kidney problems. After a fall at home last summer and spending weeks in hospital, she now uses a zimmer frame indoors. She can't get down the stairs and hasn't been out of the house for years. It takes a team of ambulance staff to get her to hospital. She also has problems getting out of bed/off her chair/off the toilet and has had to call Care Link several times. I first noticed problems last year when she couldn't tell me what the doctors had said on their rounds. I put it down to her not being used to loads of people talking to her, but it's got worse over the past year. Now she is confused about time, thinking lunch time is the middle of the night and that evening is morning. She is also forgetting to take her medication. The carers who started when she came out of hospital are now down to just 2 visits a week, but they will be starting 2 visits a day very soon (mainly for the medication). There is also a District Nurse who comes and dresses my Mum's leaking legs, but I now understand they have been turned away by my Mum on more than one occasion. The carers have offered personal care, but that has been resisted on all fronts. The Occupational Therapist was told that my Mum can do everything for herself - get in the bath, do her own shopping, you name it, she does it (not)! The doctor (who didn't visit for many years and is still hard to get out) finally turned up last week to say my Mum should consider going into a nursing home in the next few months. She doesn't like the idea and to be honest, I'm not sure she would ever settle. She hated hospital and told me the nurses were ill treating the patients. She's never liked meeting new people and has basically holed herself up at home for the past 40 years.

    We can't have her with us - we live in a very old house with every room on a different level. Anyway, if my Mum is going to be a danger to herself at some stage (leaving the gas on etc.), then it's as likely to happen when my husband and I are at work. I do know of someone who has given up work to care for her Mother at home, but her circumstances are very different. It doesn't make me feel less guilty though.

    I have had some ideas for getting her used to a move. She obviously couldn't visit, but if we buy a digital camera then she can see the homes and surroundings. I thought we could get her moved closer to us. Not much point in her being close to work if I'm being kicked out in a couple of months. I believe this is possible.

    The doctor has agreed to an assessment, but he has told us the consultant won't come out. How on earth are we going to get her to another appointment? Also, how do we go about finding nursing homes near us? Do we have to contact them via a third party, or do we just trawl through Yellow Pages? Sorry for the silly questions, but my brain is so full of other stuff as well that I just can't take in any more. We have a cat with a brain tumour who is going to need another "brain drain" over the next week or so. That involves 2 x 200 mile round trips and a load more worry.

    Thank you for listening!
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Hello Zooey and welcome to Talking Point.

    It sounds as if your name is very appropriate!

    Dealing with your last point first. csci.org.uk is the website of the commision for social care. There you can search by postal code with an x mile radius and read the current inspection reports on potential homes.

    The guilt: well we all have guilt to a greater or lesser degree - it seems to go with the territory. As to whether she'll settle in a nursing home: I have to say it has been my expereince that a nursing home is a totally different experience to a hospital in terms of care - much, much better.
     
  3. May

    May Registered User

    Oct 15, 2005
    627
    Yorkshire
    Welcome to TP Zooey

    Does your Mum have a social worker or CPN? That's a first point of call for advice., if she doesn't have them ask her doctor to get things moving for you. Also look for your local Alzheimer society in the phone book, an excellent source of information, as are the fact sheeets on the main page here.

    Residental/nursing/emi homes are totally different to hospitals. You do get the good, the bad and the downright ugly..... but look around, you will also find the ones who really care about their residents and make a home for them, whatever stage of this illness they are at.

    Guilt..... with this illness you're damned if you do, damned if you don't.:( So try not to let the 'guilt monster' settle on your shoulder.....

    Do come back and let us know how things are going with Mum.

    Take care


    PS. You do like to pack a lot into life don't you? 45 assorted animals, wow!:D
     
  4. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hi Zooey, well, what a menagerie, but obviously important to you, so don't let that be an issue in your mum's situation. You have a life too, but 5 hours a day is hard work! Plus the exhibition. Well, I'm always admiring of a busy woman!

    It sounds as if your mum is at the stage of needing care. Possibly Nursing care with her disabilities. You need to get the GP on board and an assessment made of your mum's needs. The Social Worker will arrange that. You are entitled to ask for an assessment on the NHS.

    The business of not knowing if it is day or night is significant. That's what happened to my mum in a space of weeks. Why is it dark? I went for the bus and it didn't come cos it was dark? Yes, mum you were at the bus stop at 2 a.m. Only a matter of time till that is your mum - and it could be tomorrow.

    Re looking after herself, well I'd not been to mum's house in years, never invited, no need, as mum and dad came to us by choice. After dad died, 3 years ago, I picked mum up outside her house on Sundays and brought her to us, and she told me how she'd cleaned the bathroom on Monday, the kitchen on Tuesday etc. I know she loved cleaning, so thought she was doing fine. It wasn't till she was admitted to hospital in June that we checked on the house, and what a filthy state it was in! The sink was rancid, the fridge was full of mouldy food, the bath was unusable (yet she had a bath every week), the shower room was black with fungus (she hadn't noticed), etc. etc. Oh, the cooker, only 3 years old could have cooked itself a meal, there was so much food on the hob. She wasn't looking after herself at all. And after she was hospitalised we had stories from the neighbours, the milkman, the window cleaner "Yes she was up at 3 a.m. hoovering", "she was having her breakfast at 7.30 p.m", she was out up the road at 3 a.m.". We had not a clue. It became obvious that she hadn't been taking medication properly and hadn't been eating properly. I found her fridge full of old fish and such.

    Choosing a care home. Well, if you read this website you'll find lots of people who don't like their care home. The staff are not nice (a month later, the staff are wonderful), the food is dreadful (a month later, Oh I can't complain about the food, there is plenty of choice and its always good), the boredom there is nothing to do (a month later, we've been on two trips out, we played bingo yesterday, and a fella came in to do a sing-song). Give it two months, and most people are settled somewhere. Mum didn't want to go in a home, still doesn't know why she is there, it all came on so fast for us (and for her). She must be as bewildered as we are.

    Some homes you will discount at once, use the "nose test" and walk straight out. Your mum won't want to go somewhere that smells of old people and death, as did one home we found. It was probably a wonderfully caring home for someone who was dying, but my mum ain't dying yet, so that was out. Some you will waiver about. Look at the other residents, are there some your mum would get on with, given the chance (hey and that's funny, cos mum has made friends with ladies I'd never imagine her liking), but are there enough of them as compos mentis as your mum to give her a selection of friends. That's difficult to gauge on a single visit. One old lady in mum's home is clearly a lot older than mum, and was sitting in a chair looking totally ga-ga when we visited first, but on the second visit was perfectly chatty (even though it was rubbish, it doesn't matter when you have AD).

    Does she want a place with lots of activities? We decided mum did, but she hasn't joined in with any! We decided she'd like a telly in her room, she was a real telly addict before she went in there, and she's never even switched it on. She doesn't watch the telly at all now, even though it's often on in the communal lounge, she doesn't even look at it. She used to watch Football, and a couple of weeks ago Man United were playing Man City, but she couldn't be bothered to watch).

    Maybe her new hearing aids will help - another story!

    Does your Mum really need a nursing home? Mum's standard care home has people in wheelchairs, and lots using frames. Nursing homes are hellishly expensive (well they all are, but nursing homes are worse, plus they have lots of patients who are totally bedbound, so does your mum want that?).

    My mum and dad were never people to have friends round either, in fact I don't think they ever did, or went to friends. Dad was more sociable than mum, and since he died, mum has pottered to a couple of neighbours for a cup of tea every now and then, and to her friend Amy who used to live across the road. She went to the Old Ladies Club every Thursday (at my dad's insistence) and to church on Sundays. But almost none of these people have enquired about my mum in 3 months. Amy and a lady from Church. Full stop. Amy is too old to visit mum, which is why we chose a Care Home convenient to us. Like you, I am an only child, friends are clearly not a major issue, it is me who will be visiting 2 or 3 times a week. It is important to consider that.

    I'm not sure on showing your mum pics of all the places you are considering. Pics only show the decor. They don't tell her what the place is like in terms of staff or comfort or convenience. We were told not to involve my mum in the decision at all (by the psychiatrist), but I chose to ignore that. We viewed 4 homes without her, discounted two and thought two were okay. We decided on one on balance, and asked mum if she wanted to go and look. She had her coat and shoes on in 10 seconds. She loved it. We had already said if she liked it, we wouldn't take her to the other, and we didn't. Zooey, you can't judge a book by its cover. Mum loved this place initially, we got a cup of tea, she met Janice, one of the senior care assistants, and liked her. I said, do you think this place will be okay mum, and she said oh yes. She went back to the hospital and told everybody all about it. it was wonderful. Beautiful sunny room (extra £40 a week!), lounge, dining room, lovely staff... A week later she arrived. Don't like it. ****. So what I am saying Zooey is there isn't any point in showing your mum all the options. You won't know till you get there what she thinks. By all means choose ONE place, and show her that, and that is enough. You won't know if it is right for mum until at least 2 months have passed. Turn a bit of a blind ear to her complaints in the first couple of weeks, discuss them with the staff in week 3 or 4, see how they respond (I did that, and their response was great, they agreed to make some changes to suit mum, like 3 baths a week instead of the customary two, cos mum likes her bath).

    Guilt? Well, if I tell you that until my dad died, I cared nothing for my mum. I neve felt she had been a proper mum at all. She fed me, and clothed me, and that was about it. She never took me anywhere, she was never interested in my education, she didn't even take me to school on my first day, she found some big girls to do that, and they thought it was a laugh to leave me behind when I couldn't keep up with them. At 11, I got a scholarship to a semi-private school. Mum didn't want me to go (it didn't cost them anything). It would mean her getting me up at 6 a.m., too early for her. I went. Best thing of my life. But not thanks to mum. I started my periods, not having been told anything about periods at all, I thought I was dying. I started one morning as I arrived at primary school, and ran all the way home in terror. Mum just said, oh, stick this pad on, don't you know what it is? Er, no. I don't remember any birthday parties mum gave for me, any cuddles I got. After I was married, I had three quite serious operations and I don't think mum even made me a cup of tea, never mind offered to do some washing or ironing. One of these operations, I had a 4 year old and a 9-month old. No help offered at all.

    Dad was different. Dad did decorating for us, taught us how to do it ourselves. He built garden walls, fences, patios. Got a mate to put central heating in for us and did most of the work himself.

    After he died, there was just mum and me. I didn't care anything for her at all. All her life she had declared she couldn't do this and that cos she was too busy or too old (swimming, an example, me aged 6 and the worst swimmer in the class. I begged her to take me swimming at the weekend. No, too busy, too old to wear a swimming costume, then aged 31). But now she needs looking after, and she is my mum, my only mum, I'm her only daughter, so I have to do it. I don't resent doing it, it is the same task whether you love your mother or not, and if you are a responsible person, you do it as well as you can. So that is me. So guilt, yes, guilt that I am doing it out of duty rather than out of love. I actually can't see anything much worse than that.

    Anyway Zooey, this was about you, not about me, sorry.

    Just trying to put things in perspective. I think I have addressed most of your points that I can. Let us all know how you get on.

    Much love

    Margaret
     

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