Thought things were going ok ...

Discussion in 'ARCHIVE FORUM: Support discussions' started by chants, Feb 4, 2007.

  1. chants

    chants Registered User

    Jan 7, 2007
    22
    Barnsley
    I haven't written on here for a while as I thought things were going relatively ok, Mum seemed to be back to her 'normal' self for a while, now she seems to have taken a downward spiral. She can't remember what things are called - like today she said to me did I have to do something, and when asked what, she said with the things for me, I asked her if she could show me what it was if she couldn't remember the name of it, and she took me to where her medication is kept for her carers to dish out to her. Yesterday I asked her to change her continence pad, and she got a frozen meal out of the freezer and asked me what she had to change it to. Then a few minutes later, seemed 'ok'. She then told me that she couldn't remember how to use the hoover, and today, she had forgotten how to use a fork, so we now have to cut up her food. Tomorrow she may be relatively ok, I don't know whereI am with her at the moment.

    Her psychiatrist will not let me have a copy of the report that she did from her visit to my Mum, because of patient confidentialy, so I have to request a copy via filling in a form, which Mum has to sign also. Mum will sign I know because I will ask her to sign, but won't know what she is signing, and the psychiatrist says that she is capable of making her own decisions. All Mum does is sit and wait for someone to call, be it either me or my brother, or the carers, drinks (when told), eats)when told), sleeps, and goes to the shops with her sister in law and buys milk and bread, everyday! Most of which I throw out.

    She will not consider residential care, although this is going to come sooner than she thinks and no one can do anything about that, as the psychiatrist has written down that she is capable of making her own decisions!

    Thanks for listening! :confused:
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,885
    Kent
    Hi Chants,
    This is what happens during the earlier stages. One minute all seems relatively well, the next minute there is total inability to communicate. It`s really difficult.
    Are you your mother`s next of kin? If so, you should be able to discuss her condition with the psychiatrist.
    What I would do, and what I did when my husband first became ill, is keep a diary. Dates, times and incidents. Then you have a detailed report for the medics and will be able to question the decision whether or not your mother is capable to decide for herself.
    She may not consider residential care but would she agree to day care? This might be acceptable to her as a half way measure.
    Please let us know how you get on. Someone else on TP may have some better ideas to help. Take care, Sylvia x
     
  3. chants

    chants Registered User

    Jan 7, 2007
    22
    Barnsley
    Hi Granie G, thanks for replying. I find it very frustrating and upsetting, because Ican't do anything to help Mum, other than put in as many things as I can into her home, e.g. carers, flood alerts, smoke alerts, 24 hour on call wardens etc. but this does not keep her safe 24 hours a day, as she has long times between carers calls.

    My auntie takes her out every day to the shops at an unearthy hours of 8.30 in the morning, and has her back half an hour later, but this is getting too much for her also. She is going away to her bungalow at the coast for the summer, and then things will get harder, as she provides lunches 3 days a week, my brother provides teas 7 days a week and I do all the rest.

    As my brother is going away for a week at Spring Bank and my auntie will also be away, I have requested a weeks respite, as I will be working full time and cannot do everything. Last year I used a lot of my annual leave due to Mum's appointments, home visit assessments and crisis days. I am feeling relieved at the thought of this week in respite, but also upset, as I feel that I will have let her down.

    Some days I feel that I don't want to carry on with it all, and then others find it a case of, shrug the shoulders and get on with it. I know it will get worse as Mum gets worse, but feel some days that it can't get any worse than this and me stay sane.

    I am Mum's next of kin on paper, although my brother is older, but he leaves everything to me apart from his wife making her tea 7 days - which in itself is a lot and I know they are regretting starting it now, as it a big commitment.

    I shall wait and see what happens.

    Many thanks for someone being there - I can't always speak to others, as most people are tired of listening to me about it.

    Chants:confused:
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,885
    Kent
    Hi Chants, It`s really the biggest problem to care for a parent when you work and have a family. I did this for my mother and had people phoning me at work [including the Police] with disaster stories, at all times of the day. I was lucky to have a very understanding Head of Department.
    Things improved when she went to day care. Is there any chance of this for your mother? It`s far better than carers coming in at set periods in the day. You know she`s safe from 9-5 at least. Perhaps you could explore that possibility. It would be company for your mother too.
    Just a thought. Sylvia
     
  5. chants

    chants Registered User

    Jan 7, 2007
    22
    Barnsley
    Hi Sylvia

    Mum is flatly refusing to go to day care, and to be honest there isn't much day care in Barnsley anyway, plus the social workers won't particularly try to talk her into it, and my mum has decided that if she goes she will never come home again.

    My boss at work is very good, but you can only go so far with it all and then they get alittle tired of it.

    Thanks for replying - chants
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,885
    Kent
    Hi Chants, You are in a `no win` situation, aren`t you.
    Are there any neighbours who would be prepared to get involved. Did your mother have any she was particularly friendly with?
    When I became involved with the care of my neighbour, he had refused allmy offers of help for years. He was very independent.
    He then fell, and one of his old Army friends, knocked on my door and asked if I would watch out for him. This I did willingly.
    I just thought perhaps one of your mother`s neighbours is just waiting to be asked.
    Love Sylvia x
     
  7. chants

    chants Registered User

    Jan 7, 2007
    22
    Barnsley
    Mum seems worse

    Mum has now started talking about Dad as though he is still alive, he's been dead 11 years, this is a new thing. She doesn' recognise her grandson of 24 years and calls me Mum.

    She has flooded the kitchen again, forgotten how to use a knife, the hoover and eats her meals by going round the plate, eating one thing at a time until it's all gone whether she seems hungry or not.

    I cannot seem to get any more help with her, and seem to lurch from one thing to the next and seem to be waiting for something awful to happen to her before I get more help.

    She seems to sleep a lot during the day and is then up at night, according to her and her neighbours.

    Is this the norm? I can't sleep worrying about her!!

    HELP! Chants
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,885
    Kent
    Hi Chants,
    It sounds as if your mother is beginning to need more support before she does some harm.
    If you have carers in and that`s not enough to keep her safe, perhaps it`s now time to consider either day care or residential care.
    This is such a difficult decision for you, but it sounds that if she`s not at risk now, she very soon will be.
    If you are working full time and trying to do what`s best for mum, you need more help than you have now.
    Take care, love Sylvia x
     
  9. Clive

    Clive Registered User

    Nov 7, 2004
    716
    Hi Chants

    All you say is quite normal. It is very difficult to accept as it is so different to what we have thought to be normal. Also I think you have to accept that the help you will have expected to receive from NHS and SS in this kind of circumstance will just not arrive.
    You will do your best for your mum, and always worry that you should have done something more or something different. I found the biggest problem, when my mum was like yours, was accepting that I could not do more than I did. Just keep up your good work. That's all your mum would expect of you.
     
  10. Helena

    Helena Registered User

    May 24, 2006
    715
    My Mother was exactly the same and was adamant she was staying in her home come hell or high water and cerainly would not allow any aids or assistance .

    Cruel as it seems you simply have to stand back and let them get into their own mess because nature takes its course and the disease will trigger a fall sooner or later which will land her in hospital ...........then and only then will you be able to force the issues and the doctors will insist she cant continue to live alone
     
  11. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    It does seem very hard to say that vulnerable elderly people actually have to end up in hospital, before the doctors and social workers will force the issue!
    I was lucky that my Mum asked to go into care, when she couldn't cope any more and she kept falling. I suggested she just tried living in a care home for a couple of weeks to see how she got on, as the local home didn't have a place for her until someone moved into a nursing home. Fortunately she was happy with the arrangement, until she broke her hip and ended up in hospital.
    If children were at risk of hurting themselves or being hurt by their environment, I'm sure that Social Workers would have no hesitation in taking them into care, whatever the relatives thought about it. Perhaps the Social Services should intervene at an earlier stage and give more guidance to families, as it is a hard decision to make.
    I think much of the resistance among older people, is due to an association with the old "workhouses" which Mum says existed when she was a girl, although I thought they were closed down before she was born, just over 80 years ago.
    There is a need for a greater variety of rented sheltered housing so that there is the possibility of a choice of accommodation in the early stages of dementia. The advantage of a care home is the routine of meals etc. which I found kept Mum more awake during the daytime, rather than moving about her room in the early hours of the morning.
    I really don't think there is an easy answer to all the problems, but there comes a time when 24/7 care is absolutely essential.
    Kayla
     
  12. Irish_Lisa

    Irish_Lisa Registered User

    Feb 24, 2007
    37
    N.Ireland
    I completely agree with you! My granddad passed away 2 weeks ago and suffered from Alzheimer's for many many years. I had always had a very strong relationship with him and was adamant that he would never go into care. It just goes to show how unknowledgeable people are about the Alzheimer's disease. Although we held off for as long as humanly possible it got to the point where we just weren't able to provide granddad with the care he needed. While we weren't 100% happy about him being in a home he became more content until he became ill.
     
  13. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Lisa

    Welcome to TP.

    So sorry about your Granddad. You obviously loved him very much, and you must be feeling low just now. Please post again and tell us more about yourself.

    Love,
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,885
    Kent
    Hi Lisa, Welcome to TP.

    Please accept my deepest sympathy and sincere condolences on the death of your grandfather. I understand your feelings about residential care versus home care, I think most of us feel the same.

    We fight and struggle to care for sufferers in our home, or in their own home until we reach breaking point, and know they are at risk.

    Sorry Helena, but I would not advocate leaving anyone in `their own mess`. That IS cruel.

    When people are no longer able to take responsibility for their own health and safety, is the time to step in and, in my humble opinion, take responsibility for them.

    Sylvia
     
  15. EllieS

    EllieS Registered User

    Aug 23, 2005
    170
    SOMERSET
    Hello Chants

    I'm sorry, but it sounds like it's time your Mum's GP started to do what he should have been doing for a while.

    If he's not involved already, get him to visit your Mum and get the community psychiatric team involved to assess your Mum properly. Following the assessment the team SHOULD make recommendations to help the situation.

    Is there an Alzheimers Day Cay centre in your area - I've heard many people say how great they are. Perhaps you could go to one with your Mum - not making a deal out of the fact that it is a Day Care centre. She might enjoy it and you may be able to sit back after a little while and see her possibly start to accept it. (Sorry, but it's a bit like taking a toddler to Playschool for the first time).

    Perhaps you should also be getting Mum to sign a Power of Attorney form which will make it much easier for you to talk with Doctors etc.

    I hope this is helpful.

    Ellie
    x
     
  16. chants

    chants Registered User

    Jan 7, 2007
    22
    Barnsley
    Back breaking today

    Hi everyone who replied - many thanks

    I have just spent a back breaking and heart breaking day with Mum today, just trying to buy a pair of shoes and some new clothes.

    If I take her out of her own little environment of her village (which i have to if I need to buy her anything), she becomes unable to walk and starts to 'faint', so I have a wheelchair - I have a bad back myself and my goodness, does it hurt now. I will have to reconsider this action and just go and buy them by myself. Mum had no input and just looked at everything with her red eyes and said they were lovely - bless her!

    I have carers coming in 3 times a day to Mum and this is not enough, as it 's the times in between when she does something like flooding the kitchen etc.

    I work full time, as my son is at uni studying to be a doctor, I have a good job and cannot get any financial help with him. My husband is good, but we also have to help his own elderly and frail parents out also - as they are very good mentally, it can seem harder with them, as they refuse most things which would help them and us if I am honest.

    I would like Mum in a home, just for her safety and my sanity really, (selfish I know), but they SS refuse to do this since the visit from the very helpful (sarcastically said) assessment of the psychiatrist.

    I will just keep on doing what I can when I can, have had to withdraw a little due to my own health problems, which are as a result of looking after Mum for 11 years in one way or another, and wait until something awful happens, and then things will resolve itself one way or another. Terrible thought really.

    You are so right, if it was a child, or an animal, in this type of situation, blue lights would be flashing!

    Oh well, many thanks for your kind ears, take care all of you.

    Chants
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,885
    Kent
    Dear Chants,
    All I can suggest is you keep a diary of incidents that cause you concern. Keep it for one month, then take it to either your GP or your mother`s GP.
    Keep a record , including the time, the date, and whether or not she was alone or being cared for, either you or a carer.
    Then challenge her assessment.
    Good luck, Sylvia x
     
  18. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Chants

    You sound as if it's not just your back that's breaking. You desperately need help, and I can't understand why you're not getting it.

    Have you had a carers assessment? If not, ring SS on Monday and ask for one. Be prepared to stand up to them, you are entitled, but they are reluctant to offer it.

    Stress how hard you're finding it, and you're afraid your own health is breaking down (no lie!).

    This usually gets them moving. They're afraid if you break down they'll have to take over, and that will cost!

    I'm not being stroppy, I sympathise very much -- I had to go through the same thing two years ago, and now I get much more support.

    Love and hugs,
     
  19. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Dear Chants,
    It wasn't until Mum went into a care home in June 2005 that I realised how much strain I'd been under and how near to breaking point I'd come. As I'm an only child, there was no one else to share the responsibility and quite frankly the SS were completely useless.
    One week, when it had been snowing, both my husband and I had bad flu-like colds and it was unwise to visit Mum. She had run out of pills and there was no way to get more to her apparently. The district nurse couldn't possibly pop in to check if she actually needed them.
    In the end we had to call in, even though we still had colds, but this, along with Mum's falls made me realise how vulnerable she was.At least now we have peace of mind and I can spend my visits talking to Mum rather than sorting out problems.
    In many ways we wish Mum had gone into the care home earlier as she was very happy there and the routine and company were good for her. After three months she fell in her room-probably forgot to use her stick and she ended up in a nursing home. She has a wicked sense of humour and the staff said today that she is very lucid and doing well. I do admire people who can work so calmly and professionally with elderly confused residents as I run short of patience quite quickly!
    Kayla
     
  20. chants

    chants Registered User

    Jan 7, 2007
    22
    Barnsley
    Things no better

    Hi everyone, thought I would write a little note, apparently, Mum not only thinks that dad is alive, but I have now found out that she is seeing him also. She rings me up early to ask if I have rung her, as she has got to the phone and it's stopped ringing, and then when I have visited and tried 1471, no one has phoned that day at all.

    She gets confused over how old people and their children are one minute and talks lucid the next. She usually knows what day it is, but 'doesn't bother with the date thingy'.

    I have been stopped by strangers in the street in my Mums village telling me off, saying that she shouldn't be out on her own as she will get run over, how can I stop her going out, lock her in? I don't quite think I can do that.

    I took her shopping myself in her village on Saturday, she is quite unsafe with her shopping trolley - she uses this to walk with when outside - rams it into things- anything at all - she nearly went into a workmans hole at one stage, very worrying.

    She also rang me up afterwards at home and asked what I had done with all her money - that worries me - if she starts saying things to other about money, there are plenty of people who would believe her.

    I am tired and losing patience, I have tried to get hold of various professionals today without success, will try later this afternoon. My day off work today - I work full time - it is always spent trying to sort my mother out.

    I have now got to try and sort out my in laws, who can be as demanding in other ways, wish I could just run away to be honest!

    Chants
     

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