I am a full time carer for my Mother. She hates me going out as she feels fearful on her own.
Clearly I need a life, not just tv watching with Mother although that is ok sometimes.
Even if I go out of the room she calls for me.
She has 2 carers 4 times a day as she has no mobility (arthritis in her knees).
How long would it be reasonable to leave her for? She has a wrist thing in case she falls.
There probably isnt an answer. I feel trapped!
Entirely at your discretion.
For ANY lone carer , a choice that can be a daily one.
In short , I took my caree with me if anything over an hour was involved.
In essence … just the one time a lone carer makes the " Wrong " decision will haunt both him / her and the caree for days / weeks / months to come … a close shave ? … " What if I had been out for another ten minutes ? " … all part and parcel of life / survival for a lone carer.
Even then . what if the lone carer had an accident whilst out … or had one in the home rendering him / her unconscious ?
Emergency card fine … contact the caree … and when the phone rings , caree is unable to ask ?
A NO win lottery … and very few win.
Ah yes, the prison of care…
It boils down to three questions.
(1) Is your mum in PHYSICAL danger of any kind not having ‘someone’ in the room with her?
(2) Is your mum in EMOTIONAL DISTRESS if no one is the room with her?
(3) Is your mum in EMOTIONAL DISTRESS if YOU are not in the room with her?
Because what you can do depends on what the answer is to the above.
If the answer to (1) is ‘no’, then of course you can leave her, ie, she won’t come to any physical harm.
If the answer to (1) is ‘no’ and the and the answer to (2) is no, then, again, you can leave her. OR, ‘someone else’ can be with her.
But it’s if the answer to (1) is no and to (3) is ‘yes’ that the problems start.
For myself, I personally think that if she is in ‘emotional distress’ if you are not in the room with her as much as she wants you to be (which is???), then I still think you can leave her.
Of course we don’t want someone to be in emotional distress, BUT it depends on what we have to do to ensure that! If it means spending years of your life as a ‘prisoner’ just to ensure she is not in emotional distress then that is just not fair on you.
I would say that putting up with you NOT being there all the time is just part of ‘the deal’…ie, in exchange for having you there MOST of the time, she has to put up with not having you there SOME of the time (and then it is only a question of deciding how much is ‘some’!)
BUT I don’t think that the principle of her being in emotional distress at your absence per se, is justification for her having you there as much as she wants. We don’t get everything we want in life, and she doesn’t get you all the time.
BUT again, all that can go out of the window IF your mum has dementia. For both good and ill reasons. The ‘ill’ reasons are that she will have no mental ability to understand ‘the deal’, and that she will have no idea that you are only away from her for a set period and you will indeed be coming back to her. Like a baby or a dog, if she can’t see you you aren’t there…and she doesn’t know when you’ll be back.
Eventually, though, as dementia progresses, that inability to tell time tilts in your favour, as she will simply ‘forget you exist’ the moment she can’t see you, and won’t know how long it is since she last saw you…
It can take years to get to that stage though.
Overall, do you think that it is YOU she wants, or just ‘someone’? If the latter, then simply having ‘anyone else’ there could give you the vital ‘escape’ you need to keep any sense of sanity at all…
Consider, too, WHY she wants you/someone with her.
When you are with her, what do you do? Do you talk to her, pay her attention, interact with her? Can you just ‘sit in the same room and read’ while she does…does what, precisely?
Because that’s the second question. What DOES she do?
Can she still read, watch/follow TV, knit, sew, whatever?
Basically are you there to ‘entertain’ her?
If dementia is setting in, then she will lose the ability to ‘entertain herself’. Like a tiny toddler, she requires ‘someone else’ to interact (‘play’) with her. Just as one can no more leave a two year old in a room full of toys for more than say ten minutes or so before they are ‘bored’, so it is with dementia.
They need ‘interaction’ the WHOLE time. (Unless they are asleep!)(which happens more and more - the other ‘blessing’ of dementia when it comes to care, sigh).
All 3 in my case Jenny , and NO dementia !
One can tell a dog to sit still and don’t move until he / she returns … more difficult with a parent intend on proving to herself that she can still stand up , unaided ?
Child / parent role reversal … and any child is liable to call the parent’s bluff ?
All 3 running through one’s mind in that scenario …
The chains from one’s caree are always made of steel.
Question is … just low long are they ?
If she is physically safe on her own, then, if you go out of the house, will she just start calling out ‘Help help help’ as she does when you are in the house?
How would she know you’ve gone out? Do you tell her?
Would you have a baby monitor or whatever in the room so you can hear if she is calling out ‘help help’ and whether it ever stops.
If she has dementia she might go on calling that out for hours and hours?? Would it matter if she did???
One of the ‘tricky’ things about dementia in general is that in the early stages, it can be hard to distinguish between what the patient still ‘really knows’ and what they simply ‘seem to know’. They can ‘seem to know’ more than they ‘really know’ (as if their are remnants of their brain still working, but ‘disconnected’ in a way).
So, you might say to her - Mum, I’m going out for a walk for twenty minutes, and she may say ‘off you go dear’ (or whatever), and you think she’s understood, but in fact she is just ‘saying that’…she’s sort of running on left over ‘automatic pilot’. She doesn’t REALLY know you are going out for twenty minutes and then will be back again. So the moment she can’t see you any more, she’ll start calling out her 'help help routine…
My MIL did that ‘automatic pilot’ business in social situations. I once visited my sister in law with her, and my SIL and I were mostly talking to each other - MIL was given a cup of tea, and we ‘paid attention’ at intervals, so we were not ignoring her, simply having ‘our own’ conversation in between…and MIL kept giving ‘little laughs’ every now and then.
Afterwards, out of hearing, my SIL asked why, and I said ‘somewhere inside her head she knows that when several people are talking, giving ‘little laughs’ every now and then to show you are following the conversation is normal, but she can no longer read the social situation accurately and so her ‘little laughs’ are out of place’…
It was really, really sad. Just so sad. (Made me feel very protective of her, which was not always, sigh.)
I don’t think ‘some’ emotional distress for ‘some’ length of time is bad. I think it’s just ‘tough’ (like I say, part of the ‘deal’)
The physical danger is the one to worry about.
Not just for the sake of the person, but for one’s own sake - as in, does it open us up to the charge of legal neglect or endangerment???
I’m afraid, after five long years of my poor MIL declining remorselessly with terminal dementia, I can’t think ‘ill’ of physical danger. Is there anything to be gained by either the patient, or the carer, from a slight shortening of longevity???
That said, it just depends ‘how’ it happens. None of us want to think of someone lying injured, or worse. Think of that poor confused man being trapped on his roof for THREE DAYS at 103…he’s just died now, and one is amazed he lasted that long. How horribly horribly grim…
Personally, Jacqueline, I think you DO need to leave your mother for short periods, for your own survival and to enable her to still benefit from your care.
If she isn’t safe to be left, then someone else will have to be with her. This could be popping out/ being in other room whilst the care workers visit or using some of her attendance allowance to pay for a cleaner, who can clean to help you and be company for your Mother whilst you have a couple of hours off out. Or would she be able to attend a luncheon club or day centre?
If she is actually safe to be left, but just doesn’t like it, then, build it up gradually.
If she still has good understanding, then I think it’s time for a frank chat with her.
Melly1
Try and tag your me time on to a carer visit and always use the time carers are there for you. If they visit for an hour, go out for 1.5 hours . Don’t sit in the next room waiting for them to go- use your time wisely. This should be a break for you so leave them to it even if they are not perfect.
Don’t tell your mum when you are going out- just be vague with “see you in a bit” and when you get back " I was just getting a few things done"
Does your mother know how to use her wrist alarm? If she does, is there a risk she will press it and keep shouting ‘help’ until you are called back anyway? That might influence what you do.
Can you ask the GP or Consultant what would be sensible? My husband’s oncology team were great at dealing with that kind of problem. In his case, the answer was to get him a pendant alarm which included a fall sensor, in case he had a seizure and, even so, by the end only to leave him for 10 or 15 minutes. (It was not so bad in the earlier days so I am sure they were always giving me good advice for the stage he was at.)
When we reached the 10 minute point, I should have (ie don’t do as I do, do as I say) made more of the time the carers came in and paid for a longer carer visit from time to time.
Mum would HAVE to manage if she didn’t have a daughter!
HER choice is either
move into residential care, or
live in her home with carers 4 times a day.
Many elderly housebound people only have 3 calls a day. She has NO right whatsoever to ANY of your time! It’s up to YOU how much time YOU let her have, YOU are in control.
PS It’s better that you go out regularly for a few hours to “let off steam” than become so ill, physically or mentally, that in the end she has to go into residential. Surely putting up with your absence (as I’m sure she sees it) is better than residential???
A million people who need care get neither formal nor informal help.
AGE UK … Summer 2018.
!.5 million by the end of 2020 as social care ( Acual and / or affordable ) … minimum wage rise in April 2019 , same monies will buy in less care … becomes as rare as the same 6 numbers as Camelot’s 6 ?
That’s purely the number WITHOUT family members as carers , or paid care workers dropping in for a few minutes each day.
Reports across the media today … almost half the LAs have no meals on wheels service anymore … for some , a blessing in disguise ?
Control is one thing … exercising it is another if it’s only you and your caree … throw in lack of finances and those chains tend to feel a lot heavier.
Given the situation re the magic age of 60 I would strongly advise against this. You don’t want the GP to say she should be in full residential care if you can’t leave her.
Given the situation re the magic age of 60 I would strongly advise against this. You don’t want the GP to say she should be in full residential care if you can’t leave her.
BB - when Dad got to this stage of calling all the time he was well past comprehending rational arguments or seeing reason. I suspect Jaquelines mother would be beyond explanations or understanding consequences of her protests.
Therein lies the conundrum for far too many carers ?
One way the System deliberately traps family carers into caring.
" Care or potentially lose that roof over your head ! "
Caring is a choice … so we are told by all and sundry outside of Carerland , including CUK’s CEO in the past.
I don’t expect her mum to understand the reasoning really, just hoping that Jacqueline understands that she MUST look after herself as well. I didn’t, my health is ruined.
Yes of course- total juggling act between health, finances, keeping your own sanity and meeting care needs.
Ouch, I had not thought of it that way. The medical team supporting us had been working with us for quite a while and knew us well and knew we would cope with the answer. Social Services was only involved in supplying the 4 x day care visits. Listen to Henrietta, not me!
Thank you all so much for all your responses.
My Mother gets that I dont like being called whenever I leave the room but still does it then apologises saying that she knew Imwould be cross with her but … Needed to see me or know where I was, etc
She goes in and out of being reasonable.
Her wrist alarm is also a fall sensor but who knows if she would press it. At least carers come in 4 times a day so eben if she fellmoff her chair or outnod bed someone would soon be with her.
I tend to go off and do jobs round the house or fun things (my pets) when the carers come in.
I am building up a routine whereby I have about half an hour upstairs aftdr the afternoon dog walk and am not available from 6pm til after her 8pm carers leave.
I tuck her up in bed and settle her for the night at 8pm
Bowlingbun I am really so sorry that your health was ruined by being a carer and am taking what you advised very seriously as I can feel the fragility of my mental health and even my physical health ( loads of weight gain since being here with Mother).
It certainly is a juggling act.
Mother is house bound as she can no longer transfer knto a wheel chair and any way out house is not suitable for ramps so she could never come out with me sadly.
It sounds like IF you knew she was safe on her own (eg, alarm button etc etc) the best thing would be for you to go right OUT of the house so you wouldn’t hear her calling for you the whole time!
That she might go on and on and on calling for you I don’t think is a problem. At some point she would stop, and if she didn’t, does it actually matter???
(That’s the point about how much ‘emotional distress’ it is ‘fair’ to put her through, considering all you do for her in exchange!)
The thing is, thogh, that IF dementia is setting in (and I still think the endless calling is a de facto sign of it, sigh) (because it is NOT rational to do so!), then I suspect that leaveing her alone, even with an alarm, is NOT safe anyway. By and large, those with dementia are ‘unsafe’ to leave ‘home alone’? (Not always, but as a general rule…)