1. Hawkeye

    Hawkeye Registered User

    Nov 14, 2006
    8
    Hertfordshire
    Hi, I am new to this, so please forgive me if I have posted in the incorrect place.

    My mother has this terrible illness & I have just returned from a visit to see her & my step dad who cares for her. I live over 200miles away from them, work full time & have two small children to care for so I cannot get home as often as I should (& yes the guilt is all consuming) This last visit has me very concerned. She had a fall late September & broke her hip. Despite a long stay in hospital she hasn't regained any mobility. My dad decided to have her home to care for her, even though he is alone, in poor health himself & is not financially secure. She has 2 carers, 4 times a day who hoist her from her bed over to a chair & back again in the evening. She has deterioted to such a point that apart from a few outbursts she says nothing, its even hard to keep her awake. She is doubly incontinent & feeding is difficult & she has lost a lot of weight.

    My dad believes I don't care/help enough, so I cannot raise the subject of care homes, which I believe she should be in and I worry that nobody is monitering the situation. The carers, whilst doing their jobs adequatly, are not medically trained & are in & out very quickly.

    I know my father believes he is doing the right thing & trying his hardest, but I worry that its for the wrong reasons....but I feel my hands are tied & maybe I'm being selfish wishing she was safe in a home so I wouldn't feel so guilty all the time....

    I neglected to mention that my mother is 67.

    I realise I have been rambling a little, so I apologise, I have read your responses to other posts & have gained comfort knowing I'm not alone. Thanks
     
  2. alex

    alex Registered User

    Apr 10, 2006
    1,665
    Hi Hawkeye

    Sorry to hear your in such a very difficult situation...........and it is very difficult when you live so far away and have a family of your own to care for.............but i think you do need to take the bull by the horns with your father, because if he's in poor health himself...........then its quite a handful to have to cope with on his own.

    I think your dad might feel he is coping.............but how long can he keep this up?
    Better to act now, as it can sometimes take a while to get the wheels in motion.......rather than leave it until your dad makes himself ill..........and is no longer able to care for your mum.

    You know..........even children can only do the best they can under any given circumstances, so don't let anyone make you feel guilty ............because you are doing your best.

    Love Alex x
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,873
    Kent
    Dear Hawkeye, First let me welcome you to Talking Point. I hope you receive the support you need.
    I am only 2 years younger than your mother and the thought of being in her condition would fill me with dread.
    I can understand how you feel about the distance preventing you from visiting more often. There is no answer to that. When you work, have a family to care for and also live a long way away, it has to be accepted that you are unable to do as much as you`d wish.
    In the same way, I can understand your dad`s reluctance, not to give your mother up to a care home. You may not have discussed it, but that doesn`t mean he hasn`t considered it. It is possible he is hanging on for dear life, because the decision is so traumatic.
    Perhaps it wouldn`t be a bad idea to try to have a good talk to your dad, see how he feels, and explain your concerns. If you feel unable to do that, could you write him a letter. Sometimes, putting it down on paper, is a way to stay calm, think about just what you want to say, from your perspective, and avoid a big argument. If you do choose to write, please be prepared to listen to his reasons for wanting to keep your mother at home.
    I hope you manage to find some answers. Please let us know how you get on.
    Regards, Sylvia
     
  4. Helena

    Helena Registered User

    May 24, 2006
    715
    Hawkeye

    You realy must not in any way feel guilty that you cannot do more

    Living 200 miles away and with working plus 2 young children its impossible and if your Father was looking at things rationally he would see that

    Sadly he is consumed with the overwhelming aspects of trying to care for your Mother whom he cant face the fact that he is loosing her

    It sounds like she is in the later stages of AD anyway so it may not be long

    Why not phone or write to her GP and express your concerns over the strain on your Father and ask what stage he considers your Mother to be in .

    The GP may be able to get your Father to see the sense of a care home or get a domicilary visit by a Consultant who can talk to your Father

    I was 2 hrs away from my Mother and could not have split myself in 2 last year when she was ill with Vascular Dementia and she was 90 and i am 61
    I had enough just coping with all the unpaid bills , paperwork, EPA etc never mind my own home and husband and grandkids

    I most certainly could not have been in your position and been able to do much

    So please do not beat yourself up about it ...write to her GP instead and seek professional guidance
     
  5. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Dear Hawkeye ... there is nothing selfish about wishing for someone to be safe .... I'm five minutes drive from mum and worry about her all the time I'm not with her ......

    Who organised the post-op care? Hospital Social workers/OTs? That could be a good starting point to raise concerns......? I am sure your dad/step-dad will have assured them he could 'manage' ..... but have they actually taken his circumstances into consideration? Do they even understand all the circumstances?

    Tough, I know ... but you need to let a 'professional' know your concerns .... you can't be expected to manage the whole situation from a distance with your own commitments ..... but a phone call (to GP as has been suggested, to Social Services - ring your local one - they have to take responsibility to pass on information to the relevant area, to the Registrar at the hospital responsible for discharging your mother) ... might make balls start rolling ... or at least make you feel better you have had some input.......

    Please let us know how you get on ....

    Love, Karen, x
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Hawkeye

    What a terrible situation. As others have said, you mustn't feel guilty. You are doing what you can, and both your mum and your step-dad must know that you care.

    Putting myself in the shoes of your step-dad, our situations are similar. Similar age, second marriage, dealing with step-children, etc.

    I know that I want to look after John for as long as possible. I also feel that I have to prove to John's sons that I am doing my best. (Guilt monster again!)

    It may be that your dad feels he would be letting you down if he couldn't cope, he might be relieved if you took over the responsibility of arranging a NH for your mum.

    It could also be that he is afraid of the loneliness if he lost your mum (can certainly relate to that!).

    I think the best thing would be to discuss all this with him, and try to find out what he is thinking. The very fact that you are showing concern for him should make it easier.

    You could work out a plan for visiting, so that he wouldn't be alone.

    All the best
     
  7. nicetotalk

    nicetotalk Registered User

    Sep 22, 2006
    155
    stretford
    Dear Hawkeye

    I can understand your concerns for you mum and being far away must be diffecult. But your dad must be besides himself my dad cared for my mum and at times we as a family thought for my dads health it would be ideal for her to go into a care home. He carried her fed her did everything for her but at the end of the day it was him who looked after her 24 hours the only thing we said as a family was to put her in respite every month which finaly he did. He hated everymoment of it but i think he looked forward to the rest he had already had a heart attak 5 years ago now and all is well. Maybe you should talk to your dad and let him know its him you are thinking of. At the end of the day we visited dad and mum but we came home to our children my dad was left to deal with it. Its so hard i know but try talk to him you take care

    kathy
     
  8. Hawkeye

    Hawkeye Registered User

    Nov 14, 2006
    8
    Hertfordshire
    Dear All,
    Thank you so much for your kind & sensitive words.
    You are all right, for the sake of my 2 small children & my hard working husband I need to do something. They deserve more than the "grumpy mummy" they currently have.

    Writing a letter to a GP sounds like a good tack. When I have attempted to speak with social services in the past they just tell me everything has to go through my dad, so I get nowhere.

    I will try & get up there next week without the kids. I know from previous conversations that my dad is terrified of being alone....we can all relate to this fear, so maybe I need to speak to him from a different angle.

    All your words are wise, doing nothing will help no one.

    Thank you once again & I'll keep you posted, oh & a Happy New Year to you & all your yours.
     
  9. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Dear Hawkeye

    It is a cliche but sometimes things have to get worse before they get better. While there is the understandable wish to 'do something', you have to tread very carefully so that you don't damage your relationship with your father. I would find out as much as you can about care home provision, extra support from social services etc (sometimes you can 'top up' the care by paying extra, for example). Then you are ready to step in, if and when your father will let you. I would continue to show him love and as much support as you can and try not to feel guilty. Forcing the issue rarely works, but keeping the communication open between you means you can gently respond to what will be a changing situation as, sadly, this illness only gets worse. In the end he might have to accept that a care home is the only answer, but he has to take that decision himself. There are no rights and wrongs about such decisions - they are very personal and really only the carer is in a postion to know when that point is reached. I think the GP idea is good, but you might find him/her unwilling to discuss matters with you without your father's agreement. Good luck- it's different, but in its own way as hard, caring from a distance and having so little control about what is happening. I'm sure you're doing your very best and your dad would recognize this if he wasn't so stressed about the situation.
    Blue sea
     
  10. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hawkeye, I think you'd get the same reaction from the GP. They're all terrified of the Data Protection Act, and won't do anything unless the patient is there.

    I even have difficulty getting test results for John over the phone, even though I have a WPA, and it's on his file that he can't communicate.

    In any case, I wouldn't recommend doing it without speaking to your father first. I'd be very upset if I thought my step-sons had gone over my head
     
  11. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    #11 Lila13, Jan 1, 2007
    Last edited: Jan 1, 2007
    Doctors shouldn't tell you anything without the patient's consent, but you can give the doctor information. You can write to GP and Social Services every time you notice something that worries you.

    If you can get neighbours to phone they may take more notice of people outside the family.
     
  12. Helena

    Helena Registered User

    May 24, 2006
    715
    Any good Doctor or GP will be perfectly happy to be appraised of a situation/condition of a patient that they do not have a prayer of knowing

    Its also not true that they refuse to discuss the patient with you

    If your relative is frail elderly and demented they sure will discuss their condition with you .

    If you do not make sure that those who deal with the patient on a professional level do not have all the information about the patient or the caring situation they cant do their best to find a way to assist
     

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