id like to ask your veiws on the situation im in

Discussion in 'ARCHIVE FORUM: Support discussions' started by lilly-rose, Jan 17, 2008.

  1. lilly-rose

    lilly-rose Registered User

    Jan 17, 2008
    8
    hillsborough sheffield
    hello, im new and was given the link to this site by another lovely carer.

    i could do with your veiws on my situation because im punishing myself on a decision me and my husband have come to.
    im 32 and i am married with 2 children and another 1 on the way. we live wih my husbands grandmother who is 84, she suffers with alzheimers and has done for what I KNOW OF for 2 years. we moved in with her 2 years ago to look after her because she was getting worse with her memory. at this point we didnt no she had alzhimers. it was kept from us till a week before we moved in where we were finaly informed that gran had alzheimers, a you can guess i wasnt impressed but id had a feeling she was anyway as my own gran sufferd with alzhimers at the time. at the time when we moved in we were promised breaks from gran and family would come and take her out for the day ect. im still waiting for this t happen 2 years down the line.
    anyway all came to ahead sunday night and iv asked for her to be taken into a home now as im sick of being treated like a mug. the house we live in is freezing and is in a state and needs repairs doing. i never get any help from my husbands family, they never give me a break and they dont have any patience with her at all. its like its an out of sight out of mine kind of thing. YET i have no control with social sevices, finances, doctors and hosp appointments ect ect. so basicaly im the live in carer. i love gran terribly and its ripping me apart saying shes got to go inot a home now. i cant cope. my husband is fantastic and helps lots but i hav 2 children also to think aboutand now 1 on the way.
    just woundering what you all think of my situation and possibly what you would do in my shoes. i am full of guilt and wounder if im being to harsh, gran goes to daycare 4 days a week, 10.30 till 3.30. this is my only time away from her. which may sound alot to some but i dont get any resbite. i actualy used my wedding money to pay to go away over xmas just to butlins in skegness just so me and my family could hav a break just for once.
    thank you for reading if you have managed to read this far
    xxxxx
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi lily-rose, welcome to TP.

    I th.ink you'll find, if you haven't already, that your situation is fairly common. One member of a family is encouraged to take over the 24/7 caring, with the promise of lots of help and support, but the help and support somehow never materialise.

    You certainly have a lot on your plate, with two young children and one on the way. Have you tried to get all the family together to see discuss what is going to happen? If not, I think you should try it. Make sure they understand that you have done your best, but can't go on any longer.

    Don't feel guilty about this, you've done all you can, it's the others who should feel guilty.

    Also, have you spoken to your gran's social worker about this? Again, you have to state firmly that you can't cope any more. You may have difficulty persuading SW that your gran needs residential care, unless she has money to pay for it herself. You have to be determined.

    Most of all, don't feel guilty. You've done all you can, and I'm sure you'll visit your gran and make sure she feels loved.

    (Sorry, I know it's your husband's gran, but I can tell you love her just as much).

    Love,
     
  3. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hi Lilly,
    What a wonderful grandaughter in law you are! I can't imagine taking on such a responsibility and trying to raise young kids.
    No matter what happens you must know that it is almost always inevitable that the person with AD ends up in a nursing home. There needs and care are just too much for one care taker to do 24/7. Even if it is something you wanted to continue to do , you probably would have to make this decision eventually. I'm not in your country so don't know your system well enough to give you practical advice but I'm sure others will steer you in the right direction.
    I would think though that since it is your husbands family that he needs to have what we call a prayer meeting with his family. Not literally, just means time for them to step up.
    Take care Lilly,
    Debbie
     
  4. lilly-rose

    lilly-rose Registered User

    Jan 17, 2008
    8
    hillsborough sheffield
    thank you for the replies, iv not had chance to have a nosey round on here yet as grans quite a handful today so only getting chance to nip back on when shes settled for 5 mins.
    we have had talks before with my husbands family but to be honest they are not botherd. they will probably help a little more for a week the it goes back to normal. iv had many rows with them the most recent 1 being on sunday night when i called my inlaws to come and help at 11 at night because gran was so distressed she was trying to break out of the house lashing out and really going for it that me or my husband couldnt cope with her no more. the inlaws turned up and just ended up screaming at gran calling all the names under the sun really having a go at her as if the poor woman new what she was doing. she was very confused and distressed. her husband died about 15 years ago but she asks for him every ingle day. family cannot get all of this through their head. when grans son turned up( he never visits her and steals from her well used to before we moved in) he ended up just shouting at her to so i ended up going mental at them all told them all a few home truths and they should all be ashamed on themselevs. it didnt sink in so its left me now telling them get her inot a home. they will never help they cant be botherd with her so why should i help them? i feel riddled with guilt i love gran so much and i was willing ot care for her till the end but because the lack of help from them, them being so selfish and not giving me a break then i just cant do it no more. the only reason they have got away for it for so long is because i no how i felt when my own grandmother was put inot a home. i hated it and wanted to care for her but family wouldnt let me.so i suppose i saw this as a chance to make it up.
    i hav only seen a socail worker once since caring for gran, my mother in law deals with all that i hav nothing to do with it. shes always giving them the wrong information and even when she goes for her assesments at the hosp she gets it wrong. before when iv had to have a doctor or an ambulance out iv had to correct her cause she gets it all wrong. i love gran dearly and been crying most day since iv said shes got to go inot a home. the family are panicing because they now know they wong get her money. thoue house we live in is worth a fair bit of money so as long as shes here with me their money is secure :mad:. but because now iv said she has to go into an home then they arnt pleased because they will have to sell her house to pay for the care she needs. to b honest i hope that does happen because at least then they wont get her money.
    thank you so much for taking the time to read and reply. i wish id found this alot sooner.
    xxxxx
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    I was wondering what the housing situation was - I assumed that as you said you'd moved in with her, the house was hers. So if you go through with this, you'll have to find alternative accommodation? I'm not surprised the rest of the family are being less than helpful - they know that they've really got you over a barrel.

    I'm wondering - having laid in on the line with them, and if they now see exactly which creek they'll be up if they don't cooperate, would now be the time to get some of the power into your hands? I sense that much of the problems would be alleviated if you had some of the power as well as the responsibility. What I'm trying to say is - you don't sound as if you really want to put her into a residential home (although there's no shame in it if this is now the time - there are good homes out there) but you do need more help. Now there are many poster on here who will reassure you that you are not the only person who has been placed in this position by the rest of the family, and I have to say, very few of them have ever managed to resolve it - the best they learn to do is work around them and essentially cut them out of the picture (from an assistance point of view).Have you ever had a carers assessment? Because if you haven't you should have had. Social services have to provide you with one of these and that could also lead to respite.

    Best wishes
     
  6. lilly-rose

    lilly-rose Registered User

    Jan 17, 2008
    8
    hillsborough sheffield
    thank you for your reply.
    if im honest no i dont want to put her inot a home i do love having her even if she is a handful, but at the same time i find her very very stressful when she gets to much and i get no support. if i had a break from her and had her family helping out more then i wudnt have any problems but they dont. they really dont care all they are concernd about is getting their money when gran finaly meets the end. which i hate thinking about. even the simple things like 1 of the coming to give her a bath because she refuses to let me do it and i cant do it on my own. i hav to really moan to get 1 of them down to bath her for me. things have gone way to far now they wont ever change we have fallen out to many times and i have said before this is it i am no longer caring for her but i end up going back because im full of guilt for gran.
    we will need to find somewhere to live im in the process of illing in the housing forms to find a new home. iv never had a carers assesment as long as iv been here, i hav seen the SW once since being here and im not even sure what that was about. iv had 1 assesment fro gran from the nurse so she can hav pads to wear because of accidents she has. any help she does get she has to pay for. so the daycare she goes to 4 days a week she has to pay for thats the only help we get.
    thanks again for all your help really good to actualy talk to people who dont think im lying about grans state and how i live.
    thanks again xx
     
  7. candymostdandy@

    candymostdandy@ Registered User

    May 12, 2006
    81
    west sussex
    Hi Lilly-Rose

    I am in a similar situation in that my mother lives with me and I look after her with no help from family, and with one particular side of the family being paticularly concerned about the amount of money I spend in looking after her.

    I am only able to carry on caring for mum at home because I buy in care for her.

    Since june last year I have a carer in the morning to get her up and showered, and in the evening to go to bed.

    Mum goes to daycare twice a week for which we pay £30.00 per day for (social services),

    If me and my husband are going out, I get a sitter.

    I am getting through mum's money and if mum goes on for another two years there will be nothing left, but I have control over her care.

    It would be fantastic to get support from social services or a social worker, but in two years have have only seen a social worker once.

    Last week I was advised to contact social services as mum's mobility had deteriorated to see if the shower could be lowered, after 20 minutes on the phone, it turns out that it takes six months before an assessment is done and a year before the grant comes through......and its means tested ... I probably won't need by then....

    If you are determined to keep your gran at home and are able to do so, and the rest of the family do not provide any support, and social services do not provide funds, and your gran has funds use those funds to help you to help your gran....

    Good luck
     
  8. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Hi Lily-Rose

    What an amazing woman you are for keeping going for so long!

    My Mum has dementia which set in when I was pregnant with my twin sons and I could never have managed to keep going so long with her, not least because it was unsafe for my children by the time they were 18 months old to spend time in her house (pills in every nook and cranny).

    Because of this I did not feel guilty when the decision was made that she needed 24/7 care. I knew that it would require a Nursing Home. I also accepted that my children needed me (it can be a very fine balancing act at times even with Mum in a home).

    First of all my understanding is that Social Services have to provide a Carer's Assessment to ensure that you get the support you need. Lay it on the line thickly becuase with your children living in the house as well their welfare must also been considered. You have to time and energy for them as well, which at a guess you will be sorely lacking at the moment. I would ring social services yourself and explain what is happening to them and ask for this. I discovered that I always knew by parents state of health better than my sibling becuase I stayed for days not a couple of hours once a week. My sibling never understood the true situation as they were not there long enough for either parents' facade to slip.

    List the pros and cons of your care and home care, particularly given that a new baby is coming along. What is going to happen during your labour/delivery/in the event of complications and to give you enough recovery time afterwards? Social Work need to be aware of this.

    It may be that they can up the level of respite care and carers coming into you to ease the burden significantly. It may be that a home is the best wat forward, but you will have to fight..which you probably wont have the energy to do right at this moment.

    If Social Work do not give you joy directly contact the local Princess Royal Trust for Carers and try to speak to someone there or at the local CAB office who should at least be able to point you in the right direction.

    Your in-laws sound dire, but they maybe just cannot cope with the situation. Many can't and there darker, less caring sides come out.

    Good luck and (((((hugs))))))

    Mameeskye
     
  9. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Lily-Rose

    i feel riddled with guilt i love gran so much and i was willing ot care for her till the end but because the lack of help from them, them being so selfish and not giving me a break then i just cant do it no more.

    You are right. You cannot do it any more. There is absolutely NOTHING to feel guilty about - alto' I know that won't stop you feeling that way.

    From everything you have said, it is clear that your husband's family are just "using" you and your husband to take care of a family problem. As a Mum with two littlies and one on the way, you have MORE than enough to cope with, without having to be the sole Carer of Gran.

    Remember that when some-one goes into a Care Home, your caring doesn't end - it just takes a different form. You will still be visiting her, maybe doing a little shopping for her, taking her treats, spending time with her. I know that you will still be a part of her life once she is in care. The good part is that it isn't your WHOLE life - you get to have the better bits without all the rest of the responsibility.

    DO continue to say to your husband's family that you cannot and will not continue to care for her. Don't let them presure you into trying "one more time". If possible, get support from your own doctor. I'm sure no pregnant woman should be under this sort of stress.

    Come to TP whenever you need support, advice, help or encouragement. We know and understand much of what you are going through, and we want to support you.

    Take care of your self.
     
  10. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Lily Rose,

    I admire you greatly for all you have done for your gran so far. You certainly have no need to feel guilty - you have done more than most in very difficult circumstances.

    As Nell said, your caring doesn't have to stop if gran goes into a home - it just changes - and both you and she may be able to enjoy more quality time together if someone else is doing the caring (i.e. people who care for less hours than you and are not tried from two children and pregnancy!).

    My thought was initially about your health during your pregnancy - you know that this is an important time for you to look after yourself as that is how you look after your unborn child - unsatisfactory living conditions and the sort of stress you're being put through by family are not good for you.

    Also I think you need to consider your other children if gran is starting to have aggressive outbursts - my sister and I have found that these outbursts affect our children greatly despite them only being two and three - I would imagine the same must be happening with your children?

    I wish you well in whatever you choose to do.
     
  11. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Dear Lilly Rose,
    I have great admiration and respect for what you are doing. So many of us of T.P. know what it is like when it is all left to one person.
    In your case you have two young children and expecting another baby and now is the time, in my personal opinion to let the experts take over.
    You and your husband have children and a life to live. You can only do so much. It is your turn now for the help. There is the Local Alzheimer's Branch, Princess Royal Trust, Helped the Aged and Age Concern. If you went to your Doctor and explained everything, you should be assigned a Social Worker in your own rights.
    Please take care of yourself and someone is always on Talking Point whenever you need to let off steam and give support.
    I wish you all the very best.
    Christine
     
  12. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Phew, I haven't absorbed all this very well. Lily-Rose it sounds to me that your are doing far more than the call of duty would ask you to do, and good on you for doing so. But really, you cannot look after 3 children and your ageing mother in law without help. Not properly, and not fairly on your kids and yourself and husband. Despite how fond you are of her, you either have to get more support in the home, or think of a care home for her. And never mind what the rest of the family say.

    To look after her in her own home you need a lot of support. Argue for it if you can (hey, doesn't that wear us all out?). Then if that doesn't work, think of a care home. Could you try one for a couple of weeks respite?

    I;ve never been in this situation, am not the best to advise, just telling you that from where I am sitting you are doing your damned best, and should not feel guilty about anything.

    Much love

    Margaret
     
  13. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hello Lilly-rose and welcome to TP,

    You have already received some very sound advise and I agree that your priorities lie with your husband and young family. I truly admire people that can handle a young family and also care for a dementia sufferer.

    Unfortunately, it's not uncommon for other family members to stand back and watch another struggling with care needs. You can still be a part of your Gran's life even if she is in care home.

    Stand firm....your children are your main priority. If your Gran's own children are using you and your husband purely for financial gain...then that's DISGRACEFUL!

    What ever you decide to do with your Gran I hope everything works out well. Take Care, Taffy.
     

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