1. Lizzie K

    Lizzie K Registered User

    Jul 31, 2007
    East Midlands
    Hi, as a new member I would really appreciate the wisdom and experience of anyone out there. My hubby and I care for our 80 year old father/father-in-law who has dementia. He lives about 5 minutes from us and with the support of carers, meals on wheels etc., we have cared for him for the last 3 years.

    His health is now badly failing and although one of us goes into see him for a last visit each evening he is left alone from around 8.30 pm until next morning. We are worried sick that he will injure himself in the night and feel that he would no longer now be in a fit state to ring us (we had set up a quick dial button on his phone for this purpose).

    The thing is, he refuses to go into a home, which up until now is something we have respected. He had a dreadful experience with his own mother when she was in a home and always pleaded with us to keep him in his own environment. He is very strong willed, truculent and sometimes difficult to manage but we want to do our best for him.

    We are stuck about what to do. We know very little about what to do in this situation. We don't want to force him into anything but worry about the consequences of non action. We both work full time and have children still needing us, plus university fees to pay in the not too distant future so I cannot give up work. Dad has refused to go into respite care so we have not had a holiday for the last three years. I also worry about my husband who shoulders the burden of dad's care and presently look 10 years older than he should. I do all his cleaning, shopping, admin etc. but dad only wants his son deal with his personal care. My husband is an only one.

    What do we do? If we somehow arrange a care home we know he will escape (he escaped 9 times from hospital on one stay due to ill health, because he wanted to go home). If we leave him at home something serious could happen.

    Any thoughts would be appreciated. Sorry if I have gone on a bit but this is weighing heavily on my mind at present. Regards. Lizzie K
  2. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Lizzie, welcome to TP. You really are in a predicament with your father/ FIL. It's a huge responsibility for you, on top of jobs and family of your own.

    Unfortunately, if he refuses to go into a home, there's not much you can do. The only way would be to section him, and it doesn't sound as if that is an option at the moment.

    You need to write down all the things he does that strike you as dangerous. Include every little detail. Send a copy to his GP, and one to SS. Stress how worried you are, and that your own health is suffering. Say that you do not feel that you can be responsible for his safety any longer.

    If he can't be persuaded into a home, hopefully they will come up with a better care package for him. Let us know how you get on.

    Good luck,
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Lizzie,

    I used to care for my next door neighbour who sounds very similar to your FIL. He was 90.

    He did accept SS home care after a lot of persuasion, and home care cleaners. The carers came 3 times daily, including weekends, made sure he had breakfast, went in at lunch time and `tucked him up` at about the same time you pay your final evening visit.

    The cleaners kept on top of things, although a couple of hours weekly didn`t take care of everything.

    This just left me with his shopping.

    Could you explain to him that you are unable to give him as much care as he needs, and for your sake, if he doesn`t want to go into a home, he could compromise and have some extra home care in, than he is now having.
  4. Zadok

    Zadok Registered User

    Mar 15, 2006
    I second that!
    Ask social services for an assessment and see what they can come up with.
    Have you got him an attendance alllowance? This can be used for payment for care. What about asking for some technology to help make you feel more secure at night in the short term. A sensor on the door, a fall sensor etc......there is help out there! Gradually your father in law may become more accepting of carers. My mum did and I would never have expected her to in a million years.
  5. DickG

    DickG Registered User

    Feb 26, 2006
    I can't top the advice already given. We need all the help we can get form GP, SS and anyone else you can think of, do not make the mistake of soldiering on on your own.

    Keep in touch

  6. Lizzie K

    Lizzie K Registered User

    Jul 31, 2007
    East Midlands
    Hi, thanks for your responses. Its nice to be able to share the problem with others in the same boat. Yes, we have got attendance allowance and carers go in first thing in the morning and mid afternoon. The district nurser also pops in to give him his eye drops once a day and sorts out any minor ailments he has. Sectioning just seems so wrong and is not a step we feel we can even consider at present. Also, we don't really know what it means or what its full consequences are.

    Unfortunately Dad has never been one to put others first and is not now in a mental frame of mind to consider our problems.

    Can I ask Zadoc, what are door and fall sensors? We had dad assessed for one of those emergency response necklaces but he was not deemed as suitable.

    Thanks Syke for your suggestion of a diary. I will do this as, as you say, it may be useful to obtain extra care support. We had dad assessed recently for extra disabled facilities in the home. He does not have a social worker and my hubby is rather concerned about involving one until we really know what to do. We have also just got Power of Attorney so that we can manage his finances, something he was quite happy for us to sort out.

    You just feel torn between a rock and a hard place. Thanks again for the advice. Lizzie K
  7. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Lizzie, you really should ask for a social worker to assess your FIL. They will only recommend a care package, it's up to you what you want to accept. And if you work out in advance what you think is required, you can put it to them and see if they will provide it. But you're in charge, unless ther's a section, and that's most unlikely, no-one can make you accept what you don't want.

    Last year I was assessed as needing respite, but I told them I didn't feel John was ready, and I'd get back to them when I thought the time was right. I'm still struggling on, but I know that the help is there if I get desperate.

    Do try it.

  8. Gill W

    Gill W Registered User

    Jan 31, 2007
    Co. Durham

    The suggestions I had have already been given, through the wise ones on this site who've been a great support and a minefield of information for me.

    My Gran was incredibly independant before this disease left its calling card, and we had the devils own job getting her to accept some help. When we needed more help we had the devils own job getting it from social services. But once things got rolling, they came through and have listened to us now.

    Gran told us she didn't want to be put in a home, and neither did we really want her to go into one until it was absolutely necessary. We are now at that stage, and are agonising over how to approach her with it.

    In the early days, we sat and told Gran that WE didn't want her to go into a home anymore than she wanted it, but we did want to make sure that whilst she was at home, we wanted to know that she was safe, comfortable and as well cared for as she deserved. We explained to her that to do this, we needed her to allow us to involve social services, because there would be times where we couldn't be with her, and someone else would have to fill our boots for a short time. She allowed us to call them, and every stage of progression through the disease has been fought by her, but changes have been made in the end.

    To this end, could you ask social services to come in, and perhaps ask them to talk to dad and see how HE thinks they could help him stay in his own home, if that is what he wants? They would tell him that they respect his desires, explain your worries, and inform him of things they can do that will enable him to have his wish for the foreseeable future? This is what they said to Gran, and it seemed to work, for a while. Gran felt that she in control. Even though she wasn't, indirectly, if you see what I mean? She has argued that she didn't need meals, she didn't need a cleaner, she didn't need someone to help her take her tablets etc., but the carer would come and go and the mission would be accomplished.

    There is also the option of an in-situ carer for through the nights, but I have a feeling that some sort of catastrophe would have to happen before they would agree dad qualified. I could be wrong on that one, but it seems that for us to get any help on some subjects, we've had to have the worst happen before we got it.

    Good luck, and don't take things lying down. Fight your corner!

  9. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
  10. Lizzie K

    Lizzie K Registered User

    Jul 31, 2007
    East Midlands
    Thanks Norman, I have just read the fact sheet which is really useful. I never knew these products existed.

    Thanks also Gill for your advice. Dad is very good with his carers although we had to put a key box outside his front door and he would only let them in when he felt like it.

    We have sat down and discussed the situation with him. He has a wonderful way of pretending to listening to everyone and then switching off, ignoring anything that he does not want to deal with. His "deafness" also comes and goes at times! I really can't blame him, he has been independent all his life, loves his home - which he has lovingly maintained for many years - and just wants to be left alone! He tolerates everyone grudgingly but is unable to realise that he is becoming unsafe on his own. It has taken us a considerable time to get the care we have so feel, as you do Gill, that anything extra would not be easily forthcoming. We too feel that it will take some form of disaster for this situation to change.

    Thanks again for the advice and suggestions. Lizzie

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