1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Care home - Do I involve my parents or not???

Discussion in 'I care for a person with dementia' started by Lotchen, Jun 1, 2015.

  1. Lotchen

    Lotchen Registered User

    Jun 1, 2015
    1
    My parents both have dementia. They live at home in their own apartment at the moment but it is clear that at some point we need to consider a care home. They are both adamant that they do not want to go into a care home. I am currently starting to look at care homes but I am not at this moment involving them. This is where I need some advise. I know that if I take them they will just be sad because they don't want to go and after a few days or at least when the time comes they will not be able to remember that they were there. Of cause it would be great if they were there and were part of the decision. And maybe I am just trying to take to take the easy way out - I am not sure?? And I feel terribly guilty as well for going behind their backs.
    So the question is whether I make them sad now and at least suggest that they come out with me knowing that they will be really sad or whether I check a few out and when it comes to the time suggest one or two that we can visit at that time or whether I take them out with me now for them to be part of the decision process.
    Have anybody got any suggestions? - or experience?
    Thanks for the help
    Regards
    Lotchen
     
  2. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Hello, Lotchen, and welcome to TP. I'm sorry you had to find your way here, and to hear that both your parents have dementia. There's a lot of advice, information, and great resources here. You can poke around randomly in old threads, you can do a search, and you can post your own query, as you have done.

    I think it's great that you are starting to think about next steps before they are necessary. Many people don't have that option, for a variety of reasons, so good for you.

    It is hard to think about making decisions for other people, but that is what all of us-us being people who have loved ones with dementia-have to do at some point.

    A few practical questions, first: do you live near your parents? Do they currently have any help coming in? Are there other family members who participate in their care? And do you have power of attorney?

    You mention feeling guilty for "going behind their backs." I think that's a feeling many of us can relate to and we've probably all felt that way in the past and may feel that way again at times in the future. I'm sure others will chime in here.

    But the thing about dementia is that it renders our loved ones incapable of taking care of themselves and making sure they, and those around them, are safe. That's where the carers come into the picture. For example, my mother, who is 73 and has recently been diagnosed with dementia but who has clearly had it for years, insists she is fine, can look after herself, and doesn't need to be in a care home. That's the disease talking. She is not fine, she did not look after herself, she was a danger to herself and others, and that is why she is now in the care home. The dementia does not allow her to understand that she is not capable to care for herself. Obviously I don't know your parents and can't say that is true for them right now, but it will be at some point, when the dementia has progressed.

    I'm not sure if you are asking for opinions on involving your parents in discussing moving into care and/or involving your parents in selecting a care home, or perhaps something else entirely. If they are capable and willing and it's feasible then it seems reasonable to consider involving them.

    I hate to say this, but "when the time comes," meaning, when it's time for a permanent move into care, then your parent(s) may not be in any position (because of dementia and/or other health issues, or a time limit, etc) to participate in choosing a facility. If that's really important to you and your family, then you'd best do it sooner rather than later.

    You also talk about your parents being "sad" if they were to help select and/or go into care. (Again, I want to make sure I understand your concerns.) Is that something they have expressed to you recently or in the past? Could you be talking about YOU being sad if they went into care? Or the situation being sad overall? Or some or all of the above?

    Remember: you are not the cause of the sadness and all the other emotions. You are not the bad guy or the enemy here. The only enemy is dementia.

    This is not easy, but you are not alone.
     
  3. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,282
    SW London
    #3 Witzend, Jun 1, 2015
    Last edited: Jun 1, 2015
    I would certainly go and check some out before you involve your parents at all. At least then, if you do decide to take them to visit, you will have a shortlist and will be able to avoid any you know might be instantly off-putting.

    Please bear in mind, though, that the vast majority of people with dementia (or without it for that matter) will insist, if asked, that they do not want to go into a care home. However, when dementia is involved and people have no insight into their condition or their own needs, there may come a point where someone else has to make that decision for them.

    We did not ask our mother or involve her at all - she would simply have refused to go. Her dementia was pretty bad by then and she could not begin to comprehend that she was in urgent need of 24/7 care. Of course it would have been far more comfortable all round if we could have involved her and she had agreed to go, but quite honestly that was just never going to happen. None of us liked going behind her back, but what else can you do when someone who can no longer even make herself a cup of tea still thinks there is absolutely nothing wrong with her?
     
  4. jen54

    jen54 Registered User

    May 20, 2014
    235
    I have been in contact with several careomes, and have now attended a wine tasting at one-I was sent an invitation,
    I haven't mentioned homes ot mum at all, what is the point, she will get upset(and rightly so) and then forget..I feel it is better for me to go have a look and see what is available, by myself- I then have a list, or at least one that I can turn to, hopefully in case of neding respite, or if mum really declines and we cannot keep her at home- my intention is to support mum as long as possible in her home, but I have been told it is wise to have some idea of where she could go if the need suddenly arose.
    I have crossed the one I went to off the list- as it is so posh, new and so expensive! possibly to cover the activities they off, which I can see looking through that mum would not have a bar of, nor would she eat the food on their menu..ie prawn and spinach curry :(
    I don't feel it is fair to even mention me doing this, as mum would work herself up and think I am intending to farm her off asap, and that is the complete opposite to what I want
     
  5. Delphie

    Delphie Registered User

    Dec 14, 2011
    1,242
    You know your parents best Lotchen and if you feel they'll benefit in some way from being involved then by all means have them be part of the decision making process. However, you do say that 'they are both adamant that they do not want to go into a care home' so I suspect that the battle will be bigger than overcoming their sadness.

    I didn't involve my mum at all, and I even lied to her to get her to go into a care home. I told her we were going to have a holiday together in a lovely hotel. We arrived together, she was taken off by the carers, and I left.

    I did that because there was absolutely no way that my mum would agree to residential care. She thought she was fine but in reality she was living in filth, in a cold house, with a fridge full of rot, with imaginary people in her kitchen and wardrobes, was starting to get lost when out, couldn't tell the difference between the TV and real life... In short, she was self neglecting and at risk, and couldn't be left to continue with her 'independence'.

    So although telling such big lies was horrible, my choice was that or leaving her to be sectioned. So I lied to get her the best outcome, for her.

    It's tough, and I would've been much happier had she been able to choose her own care home and to decide for herself that the time was right for residential care. But it was never going to happen.

    So yes, have a think about what your parents and the larger situation will gain from having them be involved. You feel they'll be sad and that they'll forget about where they've been, so my call would be to press on without them. But you could try taking them to one, judging their reaction, and then taking it from there.
     
  6. Liz57

    Liz57 Registered User

    Dec 22, 2013
    184
    I tried to involve my mum in the decision recently. Took her out to see my favourite twice and got favourable reactions from mum both times. We had long conversations about whether it was the right thing for her and she apparently agreed but when the time came for her to move into a home (last week), none of that mattered or was remembered.

    I am currently public enemy no. 1 in her eyes and haven't been able to visit her since she moved in. I understand she's denying any need to be there and organising escape parties amongst the ladies :(. She will settle I know but I can't help thinking trying to establish an "agreement" was pretty much a waste of time.
     
  7. Bod

    Bod Registered User

    Aug 30, 2013
    1,111
    #7 Bod, Jun 2, 2015
    Last edited: Jun 2, 2015
    There comes a time, when you have to do what's best for them, whether they like it or not!
    Doing the homework(!) first on your own, is just part of it.
    You do your best to find somewhere suitable, go through hell on the day of the move.
    3 months down the line, you will see whether or not you were right.
    Calm, eating well, clean, taking part in activities, smiling.
    The hell of moving forgotten.

    Bod
    Been there, done that, got the tee shirt.
    Edit to add. If they need care, they are probably beyond being able to make reasoned decisions.
     
  8. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Agree totally. Logic is lost with dementia. Your doibg your best and whats for the best. Keeo your chin up. Its hard. Sending you strength.
     
  9. di65

    di65 Registered User

    Feb 28, 2013
    768
    new zealand
    I recently had to put my husband (66) into care. The care home is close by to our home, and his father was in the dementia unit before his passing, and my parents were townhouse residents before going into the hospital and passing away. My MIL still lives there independently in her own townhouse, so it was the natural choice for me.
    Liz57 - I was fortunate in the fact that the place where he went for daycare twice a week took him at the end of the daycare session, thus avoiding the 'public enemy No1' tag.
    He is settling now, although the staff tell me he will attach himself to another patient and follow them round - not bad, most of them are women:D
    I didn't visit for a week (on the advice of the staff) to allow him to settle, but that was hard for me.
     
  10. elizabet

    elizabet Registered User

    Mar 26, 2013
    224
    Southampton
    Hi, I think you are being very sensible looking around care homes before a crisis occurs. Presumably they would both be able to move in together when the time comes. I had to do everything in a hurry as a crisis had occurred but luckily managed to get mum into the care home of my choice of the ones I had been able to visit
    Like Delphie I had to resort to being very economical with the truth when I moved my Mum into a home- feelings of guilt, heart break betrayal etc -a mixture of emotions yet also RELIEF as she was in a safe environment- about 6 weeks later she liked it in her hotel , she liked the staff, the food and her room and after all the worry of her being on her own house I was able to have really good quality time with her when I visited.
     
  11. Krysiatennis

    Krysiatennis Registered User

    Sep 12, 2015
    3
    #11 Krysiatennis, Sep 12, 2015
    Last edited by a moderator: Sep 12, 2015
    Live in care

    Live in care option

    If both parents need care it may be a cheaper nicer option to arrange live in care at home

    Care home costs for both can run high and there are very good care agencies who can offer live in care. This can be introduced gradually neg carers coming only for several hours a day to full time live in care.

    QUOTE=Lotchen;1109259]My parents both have dementia. They live at home in their own apartment at the moment but it is clear that at some point we need to consider a care home. They are both adamant that they do not want to go into a care home. I am currently starting to look at care homes but I am not at this moment involving them. This is where I need some advise. I know that if I take them they will just be sad because they don't want to go and after a few days or at least when the time comes they will not be able to remember that they were there. Of cause it would be great if they were there and were part of the decision. And maybe I am just trying to take to take the easy way out - I am not sure?? And I feel terribly guilty as well for going behind their backs.
    So the question is whether I make them sad now and at least suggest that they come out with me knowing that they will be really sad or whether I check a few out and when it comes to the time suggest one or two that we can visit at that time or whether I take them out with me now for them to be part of the decision process.
    Have anybody got any suggestions? - or experience?
    Thanks for the help
    Regards
    Lotchen[/QUOTE]
     
  12. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,958
    How about:-

    1. Doing your own check of available homes first and crossing off your list any that aren't up to standard you think is acceptable; then
    2. Teaming up with someone whose relative does want to go into a home and visiting with them and your Mum or Dad to inspect them together? That way you'd get some idea of how your Mum and Dad feel about modern day homes and these particular homes without starting too many hares running. You'd perhaps also be able to start your Mum and Dad thinking about the benefits of moving to residential accommodation at some stage in the future.

    I suggest you only take your Mum or your Dad around on different visits with this friend unless the other spouse asks to come along too. It would be a bit of a giveaway about the ulterior purpose of these outings if you suggested they both accompany you and your friend on every visit.

    Although I'm suggesting a gentle, slightly underhand approach your Mum and Dad might not be so against exploring the options as you think they are. We took Mum round with us to check local homes "just in case you need somewhere to be looked after if Dad has to have a few days in hospital again, you don't like being on your own". Mum's poignant verdict on the very good nursing home she's now in was "This is a very nice prison, I wouldn't mind coming here".
     
  13. Bessieb

    Bessieb Registered User

    Jun 2, 2014
    108
    I've recently had to go through the same decision-making process so know exactly how you are feeling. I am still wracked with guilt for putting my parents into a CH - which I know my Father particularly was set against.
    I visited CH's without involving my parents to start with and selected one which I thought was the best option. Near to me, lovely rooms, took couples (which not all do) etc etc. When a crisis occurred and my Dad was admitted to hospital for a couple of weeks and it was clear that we needed to make a decision about care I took my Mother for lunch there to see how she felt about it. I kept the visit as relaxed as possible and didn't present the 'moving in' option at that time. She thought it was a lovely 'hotel' and was generally positive about the surroundings and that was all I could go on. The next day she didn't remember visiting but I at least felt I had tried to involve her in the decision.
    They have been there 2 months now. My Mum is very settled but my Dad is not really - but they are safe (both have AZ), cared for, well fed and visited by us very regularly and I think that's the best we can go with at the moment. I do get phone calls from them announcing they are 'going home' ...but I'm never sure they know where home is.
    Dementia is awful, such a cruel illness

    Good luck with everything
     
  14. AndreaP

    AndreaP Registered User

    I think there are quite a lot of people supporting dementia sufferers at home simply because they can't face what you're going through. Many would be thinking "how much longer can they live?" and so why not make sure there last year's are happy. But it seems dementia is unpredictable in this regard.

    To my mind it's a fate worse than death but not all will agree. We've got so clever at prolonging life, it's a shame we didn't discover a way to prevent dementia first. All my contemporaries have at least one parent with dementia. It's appalling.

    As others have said you are dealing with a situation which is not as it seems. While you can have quite normal conversation at times you are unsure just how much they are aware of what's going on. If they were truly aware they would fully realise the extent of their deterioration which they clearly don't so it's up to the children to make the decision for them. Unfortunately they are aware enough to resist and to react emotionally to the move. It really is a now win situation for many of us. Listen to your head not your heart and do what is best for everyone.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.