1. Laylabud

    Laylabud Registered User

    Sep 7, 2007
    111
    Kent
    I have been my Mum's carer for the last 10 years since my Dad died suddenly and she has been well (she lives me ), we have always done everything together, we were more like sisters than mother/daughter. About a year and a half ago i noticed a change in her memory pattern and has got worse. I talked her in to going for a memory test which she had done back in April, the results were very poor so the hospital suggested having a CT scan which was done back in may, we had an appointment for the results for the middle of june. Suddenly in early June she turned on me, very hateful and aggressive which i found very hard to cope with and i know it was not her fault. We managed to get an emergency appointment with the consultant and was admitted to an assement ward i was then told my Mum had mild to moderate Alzheimers and now in 3 months she has gone to Moderate to Servere. She was put on Aricept about 2 weeks after she was first diagnosed and has been on it for about 8 weeks. She came home for days but i could not cope with the agression so she went into a home for 4 days, they could not get the aricept to her and whilst she was there she got worse and they had to section her and then take her back in to hospital. My Mum is currently back in the assement unit of which she is settled there but they want to move her on to an EMI nursing home. I really do not want her to be moved on but have no choice and because she has no house to sell and i cannot afford to pay for a private home then i am being told that i have no choice as to where she will end up as it will be state funded.
    i am just so upset and feel like i have let my mum down as i swore that i would never put her in a home.
    The doctor has said that she might now have mixed Vascular Dementia and Alzheimers as the decline has been so rapid, they will not put her on any more aricept and will not do any more CT scans to find out anymore.
    Can anyone offer any advice as i really feel alone on this problem?
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,559
    Kent
    Hello Laylabud, welcome to Talking Point.

    There are so many different rates of progression with Alzheimers and Vascular Dementis, no two people are the same.

    Because of the unpredictable way the condition develops, no-one should be held to any promise they make about not putting their relatives in homes. Nor should they feel guilty.

    Aggression is horrible to live with, especially when you have always had a warm and loving relationship, and even though we all know it is the illness, it doesn`t seem to make it any easier to bear.

    An EMI unit is secure. There are combination locks on doors so the residents can`t run away. It is for their safety, and pdrobably that`s the reason one is being reccommended for your mother, not because she is aggressive.

    My mother was self funded, but she was in an EMI unit. There was no aggression in her, she was very quiet, but as soon as she saw a chance, she was away.

    It`s hard not to be able to choose the home you would like for your mother, but I`d like to reassure you that many homes take self funding residents as well as state funded residents. I hope you will ask for a chance to visit the home that is selected for you mother before she is admitted.

    I`m sorry you feel so alone, but pleased you have found TP. There will be a lot of support here for you, from people who all understand what you are having to suffer.

    Please let us know about the home chosen for your mother, how she settles there and how you feel about it.

    You will be able to visit her, whenever you wish, without having to live with all the aggression.

    Take care xx
     
  3. germain

    germain Registered User

    Jul 7, 2007
    342
    Hello

    Only tiny bits of advice but lots of support from me - others have far more experience of home caring.

    Firstly - from what you say - YOU are not putting Mum into a home - the medics are - because its what she needs now. My family promised my father when he died ten years ago that we'd always look after Mum - and moving her to the facility she's in now is very much in her and our best interests. None of us would expect any carer to put their own health and sanity at risk with the sometimes huge physical and emotional burden of caring for a loved one who we can't really cope with any more.

    You'll read in others postings about the "guilt monster" - don't let it overtake you and wreck your life- nor should you give in to the "martyr monster" - which tells you that only you can care for your Mum - we all have these on our shoulders daily but there comes a time when the professionals have to take over - thats what they are trained for - you can still provide all the love etc that she needs when you visit.

    As for SS - a little firmness helps sometimes - reagrdless of who's paying- hold out for what you want as long as possible -we've had good experiences with our SW - they're not all bad.

    All the best and welcome to TP
    Germain
     
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Hi Laylabud and welcome to TP from me as well.

    It's not entirely true that you have no choice where your mother is placed. It does seem as if it has to have an EMI unit, and if you can't afford to pay for a "top-up" the home will have to be willing to accept whatever your specific LA is prepared to pay for someone with your mother's diagnosis and behaviour pattern, so that may limit you, but you do within those confines have a right to make a choice. Also, bear in mind that simply becausee you are told that x is the amount the LA is prepared to pay, if x would only place her in a faciltity that did not provide the care she needed, the LA has to cough up more money. Of course, you say your mother has been sectioned: depending on the section it may be the NHS that is picking up the tab.

    As Sylvia said, many private homes also accept LA placements. The home my Mother was in was £600 per week privately funded, yet they also had clients from the LA who had exactly the same rooms and services but for whom the LA were only paying £450. This is obviously going to depend on 1) the area you are in and 2) whether your mother's care is LA or NHS funded (or possibly, a combination of the two).

    I'm sorry you feel that you are letting your mother down by not being able to fulfil your promise. However, as Sylvia also pointed out this I'm afraid is one of those promises that perhaps may be impossible to fulfil.

    However, I would ask you have they made any effort to control your mother's aggression with medication? There are meds available that, while they may not work for everyone, and while their side effects may be such that they are unworkable, may make a diference to her behaviour.

    Best wishes
     
  5. We do what is right; not what is easy.

    Dear Laylabud,

    The guilt and fear that goes along with placement into any home (Government or private),
    is consistent with all Primary Care Givers (Carers). I think we have a preconceived ‘script’ as to what will happen to our loved ones later in life and so we make promises to ourselves and many times them. At the time, we are sincere; however we do not know all the factors that will arise later in life.

    Placement is a necessity because we love and care about them; not because we do not.

    The struggles, tears and torment of placement is a fact I am afraid. But we are placing, because the illness has taken on a new detour on the journey we walk with our loved one. ‘We’ are not to blame because the illness dictates changes.

    Alzheimer’s and all dementias (many times loved ones have more than one), do not follow rules. I have found dementia does not adjust to the rest of the world. We as Carers, must adjust to the loved ones state of dementia, ever changing, fluid almost. What works one day may not work next week. So, ‘Carers must learn to colour outside of the lines’ and work at facilitating the wants and needs of the loved one, whilst hopefully, trying to balance our own wants and needs (and health). Most time this will be in a Long Term Care Facility (LTCF) setting. But what I have learned over the years is that our loved ones life does not end when placed; on the contrary. I found out (the hard way) that when I placed my mother in 2003 that she needed me more than ever. I am her Power of Attorney, her daughter, her protector, and her friend for the rest of her life. I strive to make her life in the home (and other residents) happier, I volunteer, I make her room comfortable, I help, I am a constant in her life (and others). We hug, and we never pass each other (resident or staff) without a kind word. We must work at making the life in the home more pleasant and show our loved one that we accept their new home and enjoy spending time there. We cannot run away and hide; we must stand up and work at making their lives meaningful. They still contribute to the world and we must be receptive to the little ways in which they make a valuable contribution. – This is very important that they know they are valuable and respected.

    People with dementia become very settled when surrounded by familiarity and security. They all adjust to the new home. We can continue to make their lives full in spite of their debilitating disease. We can learn to find, many times small ways, to make their lives more complete in the home (and ours). This is very therapeutic for us too.

    Do not feel guilty with having to place your mother. You are a strong woman. You are a fabulous daughter. Your mother is very proud of you Laylabud, because you have to make such painful decisions on her behalf. Our loved ones would never want us to suffer because of them.

    Do through with the placement. Stay attentive and observant and visit often. Get to know the other residents and the staff. Stay on top of what medications they want to give your mother (this is highly important). Research on the Web what these are. Keep open lines of communication between you and the staff and doctor.

    Many of us have traveled this road. There is light on the other side. There will be laughter and joy amidst the darkness of the ever encroaching diseases of dementia. But we Carers will continue to be there for our loved one. Our love WILL give us the strength to do many things we never thought possible.

    You are doing the right thing, not the easy thing and your mother would be so proud of her little girl, I know my mother was and still is.

    Hugs to you and your Mum!
    Jennifer
     
  6. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Dear Laylabud,please don't feel guilty for doing what is obviously "the right thing".I take comfort from these postings,knowing that when the time comes for dad to be admitted to a home,i and my family will get the support from all the wonderful carers in this world,especially on TP."to know me is to love me" and thats all you are doing."knowing and loving".love to you all.elainex
     
  7. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Dear Laylabud

    I've just gone through similar, though my mum is not quite as severe as yours. It came on so rapidly I didn't get chance to absorb it all. One minute she was living a normal life alone, the next she was on a Mental Ward and was told she could never go home again. Not only did it upset her, it upset me almost more.

    Fortunately (or not), my mum has her own home to sell, so she will be "self-funded", but as more than one person has said on this thread, that doesn't mean my mum gets a better home than somebody with no money. It might mean we get a wider choice, but actually, in a town in Derbyshire, which one of the highest number of care homes per head of population in the country, we only had a choice of four. The State kicks in, and a lot of homes will accept people funded entirely by the State (in my area that is up to £352 a week), but also people who are self funded (my mum pays an extra £100 a week because of this). I bet we could have negotiated a lower figure, but we haven't tried it, but we will when the first increase appears. As it happens, the only room available when we viewed the various homes, was a lovely large sunny room, so I was okay with paying the extra money, but if it was your mother, she might have to have a smaller, less attractive room. Of course you can personalise the room with photos etc. That said, my mum doesn't seem to be remotely interested in the room (or the photos!). To her it is just a bedroom, she just sleeps in it. I bet she'd have been just as happy (or unhappy) in any other room. She doesn't use it in the day, she goes to the lounge. Which I'm glad about.

    Her room has a toilet and washbasin, but she uses the communal toilets most of the time. So don't worry about that unless your mum has a problem with the toilet.

    You should still have some choice about homes for your mother. Your Social Worker should be able to tell you which ones they fully fund, and please don't think that means they are the pits, care homes now are regulated to a high degree, they all have to comply with certain minimum standards, and basically you have to choose the one you can afford that you like. They are not hotels, none of them are perfect, they are not "home", and your mum might settle better or not than most. Give it two months before you start worrying. It takes one month at least for your mum to accept that she has to be there, and for the staff to get to know her and her likes and dislikes and for her to get to know them and what the routine is, and a second month where she finds she knows all the residents and all the staff and likes it.

    No, it is not ideal. You have to make sure your mum is safe and secure, comfortable, well looked after, and if she is still alert that she has some mental stimulation. Some homes have a visiting activities co-ordinator, some do trips out (just a run into the countryside maybe, or a visit to the Tesco Coffee Shop). And if you think you can take your mum out yourself, discuss that with the care staff. Perhaps she can come to your home for a meal. I haven't tried that with my mum yet, am scared it will trigger a bad response, but it's a possibility. Maybe a cup of tea first.

    My advice is consult your social worker. She won't recommend homes, but listen to what she says such as "I have placed quite a few people there", or "I haven't had any contact with that home for a while". But she will tell you what is affordable and what is not.

    Now, you say your mum doesn't have her own home, but does she have any savings? Or indeed do you have any savings that you might consider using for your mum's care? I have no idea, and I don't think you should have to do so, but I am just mentioning it. Again, your social worker should advise on how you can help your mum if you want her to go into a home that charges more than they are prepared to pay. But we contacted Help the Aged, and a chap came round and took two hours to talk to us, and we have just received his plan of what we might be able to do for mum. I am quite impressed. I am not saying we will go with his recommendations (in fact he hasn't made any, he has just presented four alternatives to us, and as I said, mum has her house to sell, so it might not be appropriate for you). But I was surprised to find that there are some schemes that could help us more than I thought they would. Even with fairly small amounts of capital, something can be done to help. These are all schemes to help pay for extra costs where the State will not pay the full amount.

    I didn't absorb how old your mum is, but the older she is, and the more infirm she is, the cheaper it is to buy a financial plan to help pay for extra fees.

    Oh, and don't forget to claim Attendance Allowance right now. And backdate the claim to the date your mum first needed help with her problems, and think hard on that.

    And when you have done all that, and are physically, mentally and emotionally exhausted, you can say "I have done the best for mum, the best I possibly could do", and as everyone has said on this thread, you should have no guilt, no guilt at all - and this is me, only one month on, feeling guilty!

    But you will know your mum is safe and cared for, that is so important.

    I have read somewhere that if your mum has been sectioned under a particular section of the Mental Health Act then the state has to pay for an appropriate place for her, so look into that.

    It all takes time, believe me. I have spent the last two months trying to find out who her window cleaner is, her milkman, raiding her house for papers to find out who has her house insurance etc etc.

    Get back to us on this site with anything else that bothers you.

    Hope my posting has been of some help. I'm not as "kind" sounding as some people, but I still feel for you and your problems.

    Much love

    Margaret
     
  8. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Dear Laylabud,
    Welcome to TP. All this would be emotionally exhausting for you and I hope that you find valuable support here. Circumstances often dictate we have to go back on our word and as upsetting as this maybe to you, take comfort in knowing that the future circumstances were not yours to know. You will still be very much apart of your mum's life. I sincerely hope that everything that is to happen now, goes in your favour and that soon you will be at ease with it all. Take Care. Taffy.
     
  9. Laylabud

    Laylabud Registered User

    Sep 7, 2007
    111
    Kent
    Thank you for all your comments, the support and advice here is overwhelming.

    In previous posting a questions was asked of my mothers age, she will be 81 next month and she has little savings just enough to cover any funeral arrangements. My Husband has a part time job as he got made redundant 2 years ago and never went back to work full time because of the situation with Mum, i work full time so we thought it best that i continued working and my husband looked after her, he only got this part time job back in March(he is looking for a full time job). So as you can imagine we have no savings only managng to live on one salary as been difficult. It scares me to read that i possible might have to make up any short fall of the nursing home that mum will go into as i really do not know where i will get the money from to pay the difference, i guess we will both have to get extra jobs. If this is what is required then we will do it as making my mum happy in whatever time she has left is priority.
    I will be going around the possible care homes that have been mentioned to have a look, i have also downloaded some reports from an independant body as well.

    She is currently not under section, that was lifted a few days after returning to hospital.

    I will respond to a few more questions that have been put in the postings once i have time to take it all in, but thank you so much for all your advice.


    Layla Bud
     
  10. sheilarees53

    sheilarees53 Registered User

    Apr 11, 2006
    37
    Beckenham Kent
    Hi Laylabud, welcome to talking point.

    You have had lot's of advice and information from other kind people on here so all I want to say is you have to do what is best for your mum and for you.

    My dad was in a NH for three years before he died 7 years ago and my mum used to say to me 'please don't let me end up in a home'. My mum has been in an EMI home for the last 15 months and I feel guilty everytime I go and visit but, I know she is being well looked after and I know I could not look after and give her the 24hour care she needs.

    The home my mum is in has room for 50 residents all who have dementia of one sort or another and some are privately funded and some by social services.

    I live in Beckenham in Kent and my mum's home is also in Beckenham. I see you live in Kent, I wonder which part.

    I wish you and your mum well. Love Sheila
     
  11. Laylabud

    Laylabud Registered User

    Sep 7, 2007
    111
    Kent
    HI Sheila i live in Dartford so i am not too far away. Thank you for your advice.

    This illness is such a horrible and cruel disease. My mum does not really know my name but still knows who i am and i know i have to cherish the moments i have with her, like last night for instance she took my hand in hers twice and tenderly kissed my fingers and also a bit later she got out of her chair and bent down to kiss me on the forehead, which tore me to shreds once i left the hospital as i know these moments will become few and far between. My husband has said that i need to look at this with a positive mind as when we have shared these tender moments recently it is her way of telling me that she loves me and how much i still mean to her beacuse she cannot find the words to tell me.
     

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