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accessing help to get a relative into care if they won't go - Page 3 - Carers UK Forum

accessing help to get a relative into care if they won't go

For issues specific to caring for someone with dementia.
Thank you for all your responses! Mum's stay in hospital led to a Best Interests meeting with a social worker and medical staff. It was decided mum needed 24 hour care and she was offered initial care in an 'assessment home' for 6 weeks . I didn't want her to be unsettled by too much moving about. In view of mum being self funding the ball was firmly passed back to me . I was given a list of local care homes and asked to find one. Fortunately with some online research into facilities and inspection reports , I found a very suitable one after first having a very welcoming visit. Mum seems to be settling well aided by her desire to get out of hospital and a little 'fib' that her own house was not yet quite fit after the flooding when she left the tap running. She still doesn't accept responsibility for the flooding but does know that it made a bad mess! It was the carers that did it in her view. So the upshot is a weight has been lifted off my shoulders and she has a better quality of life than she had recently at home.
Mum has been in the care home since April and the carers are lovely and very caring . However my guilt feelings are making me really unsettled . She thinks she is well enough to be at her own home even though she can't manage to look after herself properly . When we visit she blames me for her being in the home and is very resentful. She threatens to leave the home so we can't even take her out for a treat . There is a DOLS order in place . I thought after 6 months she would have settled but last time we visited she wouldn't even kiss us goodbye ! Does it ever get easier?
Roy, my MIL endlessly sought to 'escape' from her two care homes! She had to leave the first because of it (it wasn't set up for anything other than very mild dementia). And a few months ago she got evicted from her second one, as their front door wasn't secure. They did their best to 'head her off' but she was so, so determined to get out, they eventually called time on her.

She's now in her third home, and it is a secure unit, so no one can get out without the code for the doors (which she can't remember). Luckily, she seems to have been a lot, lot more 'passive' as the dementia worsens.

It's all desperately sad, and the real devil is that they can't understand why it is they can't go home again! They just haven't a clue how much hard work they are. I used to say of my MIL 'If she knew how much hard work she was, she wouldn't be the hard work she is'!

I take it that when you try and explain to her that she 'needs' to be where she is she resists that. What if you say ''Mum, there's no one at home now to look after you - but they look after you here, so that's why you're here'.

But the 'urge' to escape seems incredibly powerful in them. In a way, it's totally understandable. They are somewhere they don't want to be, and they just want to go home.

What happens if you take her out? With my MIL, she came out very readily (obviously!), and I'd take her for a drive, and a cream tea, and so on, but taking her back was always 'iffy'. Luckily, at the second home the trick was to return at tea time, and ensure that one of the staff swiftly 'took over', while I did a quick runner (so she couldn't see me and try and follow me out.)(bit like kiddies at kindergarten really.) Now, in the secure home, she seems more confused than unwilling, and so when a member of staff comes up and says 'Ah, there you are - now come and have a cup of tea', and leads her off, she seems reassured. It's just the 'parting' from me that confuses her, rather than a resistence to being put 'back in her cage' (sigh.)

I do feel for her, and for your mum, and for all of them - but the situation is just impossible, impossible, impossible. It is desperately sad.

One thing though, what is she like when you're not there? She may be very 'unsettled' when she sees you, but if you ask the staff, they may say she is completely fine when you are out of sight! It is one of the few blessings of dementia, that they may well forget you exist when they don't see you. Even in the second home my MIL was pretty good most of the time, though she had 'restless days' so the manager told me, especially at times when there wasn't much going on,and they got more, until she got evicted. At the first home, she made her 'break for the border' first thing in the morning, before breakfast.

It indicates to my mind that when 'no one is paying them attention' or 'there's nothing going on' they may 'remember' that they don't' want to be there, and try and escape.

I pray nightly for my poor MIL's final 'escape'...the only way it can be now. it's so sad, but what else can one pray for?
Thank you for your reply JENNY . It certainly strikes a chord! Mum seems to be ok when we're not visiting. She is reluctant to bathe /wash but does under sufferance and the carers do really like her . She has her moments when she voices that she wants to go home but can be deflected from that. She saves her annoyance for when we visit and takes it out on me . We are greeted with 'I knew you would come for me ' and it's downhill once she knows we are not taking her home. She raises her voice and accuses me of not caring . ' Just take me to my house and leave me there' , she says. I've got to the stage where I don't want to visit because I feel so guilty leaving her when she is so adamant that she doesn't want to be there .Very convincing in a way that belies her dementia! Also I feel we are only unsettling her normal routine by visiting . She doesn't try to 'escape ' the home which is very secure with coded doors. We are wondering whether it would be better to not visit for a few months and just ring the home to check she's ok . Perhaps she will settle and we can start visiting again - at present visits seem counter productive .
ROY_1603 wrote:Mum has been in the care home since April and the carers are lovely and very caring . However my guilt feelings are making me really unsettled . She thinks she is well enough to be at her own home even though she can't manage to look after herself properly . When we visit she blames me for her being in the home and is very resentful. She threatens to leave the home so we can't even take her out for a treat . There is a DOLS order in place . I thought after 6 months she would have settled but last time we visited she wouldn't even kiss us goodbye ! Does it ever get easier?
Roy, why are you feeling guilty when it is Mum who cannot look after herself, who has advanced dementia, who only a few months ago was living in her own filth?
Sorry if that sounds harsh but the only thing you are guilty of is making sure Mum is safe, clean, fed and looked after. It takes a team to look after an advanced dementia patient and you say Mums is loving and caring.
Yes you may well feel sad, and hurt when she says those things ( and probably doesn't know she's saying them) but you are NOT GUILTY.
Soon she may start saying all sorts of weird stuff you won't believe, so don't believe her now.
Please be kinder to yourself
Xx MrsA
Roy, the very sad reality is that mum's NEEDS are not what she wants. She needs to have 24/7 care. This is the bottom line. You have been a wonderful son, doing your very best for her, and should feel proud of supporting her so long, when she has not been the easiest of patients. Try to accept that she is blaming you for recent events, because her dementia is affecting her reason, it's not your real mum talking, but the dementia. I know it's so, so hard. Frailty, both physical and mental, is the price we pay for extreme old age I'm afraid. Surely better than having a heart attack and dying, like my husband, when only 58?
Roy
My husband went into a nursing home very end of March.
He is more settled now. Still has his moments. I can't tell you it gets any easier, wish I could. However, YOU know you have done the very best thing for your mum. Her safety is paramount. Your peace of mind is very important. So it seems we have to ride with the bad visits. Oh, believe me I understand that's easier said than done. It's the dementia making your mum as she is. Rejection of your goodbye kiss is hard to take. She has probably forgotten it. So if you can think, so she didn't let me give her a kiss, but she's safe, and most probably happy enough when I'm not there,it may help you to cope. Sad, not guilty!
Thank you for your replies - they are very reassuring .I would appreciate advice re -visiting my mum. Do you think it better to restrict our visits while she seems to get so unsettled by them when day to day she only has little outbursts. Should we leave her , for a while without visiting ,to establish friendships and routines or just try to visit and take the flack ?
Roy . That is the question!!
With helpful advice from people on the forum I've cut my visits down. I now go every other day. Then decide whether Sat or Sun. Limit it to 4 hours max. Rarely stay 4 hours now though. My daughter goes on the days I don't usually. Other daughter visits the weekend day I don't. I find Im not so fraught. Still get the stomach knot as I'm getting ready to go.
You have to consider yourself as well. I personally feel a break is needed. Sad and awful as I feel ( my poor hubby) I now have to pace myself,and so do the rest of my family. A few of the male visitors are with their wives for hours and hours. I can see it takes its toll. Not a criticism, because each to their own. However, when the one lovely man takes Sunday off each week, his wife is no more unsettled. If she's in a lovely mood she is, if she's in a difficult mood she is!! Her husband being there or not really doesn't make a difference. She, with all of the residents are cared for regardless.
Hope this long winded post is some help to you.
Roy, I think it's a pertinent question - is it 'better' to visit frequently or infrequently?

First off, ask the care home manager and the staff who deal with your mum every day. (By the way, I'm very glad that she seems perfectly 'OK' when she is with them, and that they like her. I do think it makes a huge difference. The staff at my MIL's place all say she's 'lovely' and indeed she is - she's quite 'gentle' and 'easy going' - which not all of them are - and they are really sweet with her - and I don't think it's just bcause I'm watching, she does seem genuinely 'reassured' by them, and I see her being led off and they tease her a little and make a little joke and she genuinely laughs in a pleased way....)

If the staff report that your mum is unsettled after a visit, and remains so for quite some time (even days?), then have a think yes about your frequency. With my MIL at the previous place where she kept trying to escape, the care manager told me that taking her out the front door was not helping! We discusse whether taking her out a side door (tha Iwould open with a key) would make her 'forget' that the front door worked, but in the end it didn't come to it. The manager would have preferred me to 'visit', rather than take her out, but I hated that for two reasons. Firstly, she always enjoyed - and still does! - our drives out and about, and why shouldn't she want something different from the four walls of the home (plus, I'm sure all the 'external stimulation' of seeing the world outside was good for her mentally!). Secondly, it was SO much eaiser for ME to take her out! I didn't have to talk non-stop (though I 'chatter away a lot about family and so on), because we could watch the countryside, and I'd make comments such as 'Oh dear, another of those horrid wind machines on that hill!'. Whereas sitting with her in the residents lounge was a real ordeal - OK for ten minutes, nothing more....

(One upside of the secure unit is that I can take her out and it doesn't matter any more!)

Personally, I would say that only if your visits are having a 'decided' impact on her unsettledness after you've gone, making her more difficult to 'manage' and clearly less happy and settled, should you stop them. I wouldn't stop them just because she uses them to lay into you! UNLESS that is really, really distressing for you (which it may well be.). The trouble is, we want them to be 'happy' where they are, since that is the only option (and yes, re-read your earlier posts to remind yourself WHY she HAS to be in residential care now!), but I doubt they'll express it to us, even if they are 'perfectly OK' when we are not in view!

The irony is, YOU probably get more upset by her 'laying into you' than SHE does! And for longer! If she gets over it the moment you are out of sight, and she is back to her 'settled self' with the care home staff, but YOU remain upset and guilty for days on end afterwards, then either you teach yourself to stop feeling like that (for all the reasons everyone is telling you!), or, indeed, you cut back on the visits.

Would she miss you? She might - because even if she is 'laying into you' she may still like to see you, at some level she can't express any more. Would you miss her? The grim truth is that she has to be there till she dies, but if you haven't visited her for a long, long time, and then get the 'call' one morning, will you feel bad and guilty that you didn't visit her more?

In a way, I guess I'm coming down on the side of 'visit' rather than 'not visit', because you will feel guilty either way - but feeling guilty after she has died that you didn't visit her more, will be a bad, bad feeling for you to take away. Better to feel 'a bit guilty' about her now, while knowing she IS in the best place for her and she IS perfectly OK there when you are out of sight (!), is, to my mind, better than regretting NOT visiting her when it is truly 'too late' to do anything because she has died.

But that's just my take on it!

As for frequency - would it be 'better' if you 'popped in and out' for shorter durations, more often? If it's logistically feasible of course.

But definitely talk to the staff who deal with her day in day out, and see what they think about the impact of your visits.

Guilt does go with the territory, useless and 'unfair' though it is. We just feel guilty that they NEED care, even though that need is not our fault.....