respite care

For issues specific to caring for someone with dementia.
hi new to all this, just looking for advice really as been through usual channels n feel like i'm hitting a brick wall!
Dad in his 80's with dementia, Mum in her 70's caring for him 24/7, she won't accept much in the way of outside help purely because the thought of letting go of the helm makes her feel guilty! she recently had a fall and i took her to Dr for checkup, he thinks she needs a break and i agree, so on talking with the family we thought i should take her away for a complete break for a week in the future.....i have been through age concern, suffolk family carers and social services to seek advice re respite and basically am being told dad needs an assesment, ok thats fine but then they say if he does;nt want to go into respite we cannot force him, all well and good however this then makes catch 22, how do i get mum the break she really needs if dad can simply protest and it cannot happen? anyone any advice please
Hi Denise,

A lot of us have been through this particular scenario ! and it's not an easy one to answer :( A lot depends on whether the respite is to be funded by your local LA or whether Dad will be 'self-funding'.
It's easier when self-funded as then it's basically down to finding a Care Home that has availability (unfortunately that is also easier said than done). But having found one (and depending on where you live the cost could be anything from £800 - £1500 for one week), the next hurdle is to 'persuade' Dad that he would also like a little 'holiday' (well, that's how I eventually persuaded my Mum) and, in your case, persuading Mum to let go of the reins for a week. Also if self-funded then you won't need an assessment from Social Services - although the Care Home Manager will want to do their own assessment to ensure that they can care for Dad needs properly.

With Mum the discussion could go along the lines of "Mum ,if you don't have a break and you fall ill with stress and worry then you won't be able to look after Dad - you have to take care of yourself too." Depending on how far Dad's dementia has advance then you could try the tactic of "Dad, Mum really could do with a short break and I would love to take her away for a short rest; you could also have a little 'holiday' at ABC Residential Home whilst she's away" (with my Mum I didn't use the words 'care' home or 'nursing' home).

It may take more than one of these type of conversations to get the message through, but don't give up - it took me a few months of repeated conversations with my Mum - but in the end she accepted the proposal as if it was her idea all along :)

The only other viable option would be for Dad to either go and stay with another member of the family or for them to come and stay with Dad whilst you take Mum away - and good luck with that one. Sorry to say but, when push comes to shove, all too often those members of the family who agree that a break is essential for the one doing the caring are usually the last ones to actually step up to the plate.
Sadly, your problem is not uncommon! I've read posts on this board about those with dementia 'apparently' agreeing to go into respite care so their exhausted carer can finally get a break, only to balk at the last moment and refuse to leave the house.

One 'trick' mentioned has been to anticipate that, and book a third party to take the person to the care home (or get the care home to send a car/taxi etc), and then basically to 'walk out' and leave the person in the house alone, having handed the key outdoors to the care-home staff, who goes in and says 'time to leave'. Of course, that doesn't guarantee they'll agree to that either....

'Managing' someone with dementia can be infernally difficult, as they cannot be reasoned with - they are like 'wilful toddlers' and the awful thing is you can't even pick them up and carry them off howling their heads off like you can with a genuine 'wilful toddler'.....(distressing though it is to be forced to resort to that - I'm sure most parents will remember 'incidents' when that was the only option, I certainly can!)

Personally, I don't think it's 'wrong' to 'trick' them. For example, if your dad is used to going out for drives in the car, then make the trip to the respite home as if it's another outing, and the respite home is just a 'hotel that does afternoon tea' (or similar), and then once you actually get them inside (ideally in the lounge with a cup of tea!), then YOU can just 'slip away'. Care home staff are very, very used to this - I've had to do it in the past, ie, just saying 'goodbye' after a visit to my MIL - and saying something like 'I must just go and check something with Matron,....'and zooming off - and/or, getting a member of staff to come and 'distract' her while I make my getaway.
IF your father is self-pay, then another option is to have a live-in carer for the duration.

My friend does this with her live-in father (with dementia), in order to get a holiday herself. The carer comes in from an agency, and sleeps in the spare room. The cost is a bit more than the care home would be - it's about £120 or so (plus you have to provide food, and in winter they will use heating and so on). Given that a care home will charge at least £100 a day (that's what my MIL pays) (in the Home Counties it would be more!), that extra cost could be worth it in terms of less hassle.

Yes, you're having a 'stranger' in the house, but for the person with dementia it can be a lot less disruptive simply swapping carers rather than swapping residences.....

Your dad probably won't like it (!) (whether or not its a live in carer or going into respite) but the key point is that 'That's the deal, dad! You get looked after at home, at considerable sacrifice of mum, and this is the ONE THING you can do to make it a bit easier for her, and whether you understand that or not any more is not the point.....all that matters is that mum gets the break she desperately needs'.

Your dad will just have to 'put up with it' for the duration - after all, your mum has to 'put up with' his dementia and care the rest of the time.

Hoping it all works out, however you manage the 'substitute care' problem. Your mum needs this!
Hi Denise,

Yes, indeed, many of us have had this issue. I had mum refusing to go when my suitcase was packed and plane tickets booked! I told her that the doctor was very worried about me and insisted I went, otherwise I wouldn't be "allowed" to continue to care. She went off complaining bitterly, quite enjoyed herself (although she didn't admit it) and even found herself a gentleman admirer!

Who is paying for the break? If you are, not sure if you have considered this type of respite break where the couple go together but the person with dementia is cared for, and mum could meet other carers? May be easier to convince them!

http://revitalise.org.uk/respite-holidays/

Good luck, it is never easy,
Anne
If a carer gives up her life to care for someone for 48 weeks a year, because she loves him, then surely he should love her enough to let hef have a rest for 4 weeks a year? If not, why keep caring?!
thx everyone i've taken onboard whats been said, and searched the forum for similar posts/dilemas..........have been told its too soon to look for respite as we don't plan a trip until the spring but was unsure as to how much notice was needed, so will sit on it till new year before approaching social services! although i shall need to book flights before to get best price so hope it all comes together in the end as now i have planted the seed, mum knows and really wants this trip
denise_1710 wrote:
Sat Oct 21, 2017 10:41 am
thx everyone i've taken onboard whats been said, and searched the forum for similar posts/dilemas..........have been told its too soon to look for respite as we don't plan a trip until the spring but was unsure as to how much notice was needed, so will sit on it till new year before approaching social services! although i shall need to book flights before to get best price so hope it all comes together in the end as now i have planted the seed, mum knows and really wants this trip
Word of Warning !!!

Get the respite booked FIRST and then book your trip around that - if you do it the other way round it's unlikely that you will get respite availability to match with when you plan to go away.

Most care homes don't have "respite" beds, they need permanent residents to maintain financial viability. Care Homes in my area have l-o-n-g waiting lists for respite care, and then it's usually a case of waiting for an existent resident to die and, if you're lucky, they might be able to fit you in before the next permanent resident is due to move in. It's a sad, but true, fact of life that there just aren't enough respite places available at any given time. I had my Mum on at least 3 waiting lists - eventually a place came up but with only 3 days notice; (luckily for me I was only planning on visiting friends in the UK so the short notice wasn't a problem but others here have had to cancel holidays and lose money because they couldn't get respite care for the time they were planning on going away.
susieq wrote:
Thu Oct 19, 2017 5:20 pm
Hi Denise,

A lot of us have been through this particular scenario ! and it's not an easy one to answer :( A lot depends on whether the respite is to be funded by your local LA or whether Dad will be 'self-funding'.
It's easier when self-funded as then it's basically down to finding a Care Home that has availability (unfortunately that is also easier said than done). But having found one (and depending on where you live the cost could be anything from £800 - £1500 for one week), the next hurdle is to 'persuade' Dad that he would also like a little 'holiday' (well, that's how I eventually persuaded my Mum) and, in your case, persuading Mum to let go of the reins for a week. Also if self-funded then you won't need an assessment from Social Services - although the Care Home Manager will want to do their own assessment to ensure that they can care for Dad needs properly.

With Mum the discussion could go along the lines of "Mum ,if you don't have a break and you fall ill with stress and worry then you won't be able to look after Dad - you have to take care of yourself too." Depending on how far Dad's dementia has advance then you could try the tactic of "Dad, Mum really could do with a short break and I would love to take her away for a short rest; you could also have a little 'holiday' at ABC Residential Home whilst she's away" (with my Mum I didn't use the words 'care' home or 'nursing' home).

It may take more than one of these type of conversations to get the message through, but don't give up - it took me a few months of repeated conversations with my Mum - but in the end she accepted the proposal as if it was her idea all along :)

The only other viable option would be for Dad to either go and stay with another member of the family or for them to come and stay with Dad whilst you take Mum away - and good luck with that one. Sorry to say but, when push comes to shove, all too often those members of the family who agree that a break is essential for the one doing the caring are usually the last ones to actually step up to the plate.
unfortunately for us there is no one else to step up to the plate-mum cares for dad, and i care for both of them!
Different things happen in different areas, so it's always worth talking to nearby homes. My mum was in a lovely nursing home, and I know they always had a couple of short stay beds. These were used for "taster" weeks, and I remember one old man didn't want to go home after his sample experience and went immediately on the waiting list for a permanent bed! The matron told me they preferred to have someone for respite first, so they could get to know the potential resident, and vice versa.

Finally, always remember the only power mum has over you is the power you let her have. Plan you holiday, say when you are going away, then it's up to her. Either she accepts help or she doesn't. If she doesn't, and ends up in hospital or a nursing home as a result, she only has HERSELF to blame, NOT YOU!