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Hi all,
Just to introduce myself, my names Peter my wife is Anne, I have just joined this forum, but we have been reading the topics for quite a while.

Myself and my wife both care for my mother and have been doing so for the last three years, who has recently moved next door to us to be closer since my stepfather died, I don't think this was one of my better ideas, she is almost housebound now with a number of ailments (too many to list) she seems to be getting worse and becoming more and more reliant on us for everything, we are her main carers and do not get any outside help whatever.

Whilst reading the topics on the forum we can both relate to a lot of what other carers have said regarding their personal life (or lack of it) and the depression that can also be brought on by caring.

Our lives too seem to have come to a standstill in the last couple of years with having to do more and more for my mother, I was working as a Tutor in college before my caring role, and our hobbies were motorbikes and motor-homing but this has virtually stopped although we do manage to get out on the bike occasionally, my wife's hobby now is Genealogy when she has the time.
We also find ourselves in the same position as a lot of other carers whereas my brother does very little to help, even when he lived closer to my mother than we did! and leaves the majority of the caring to us.
We look forward to reading more from other carers and getting any tips and advice that can to help us in our caring role.
Hi Peter and welcome.
Caring is something that you sort of slide into. You start off just helping out and then you end up doing more and more ................ :(
My main advice would be to get some outside help. Im sure she wont like it, but what about starting off with a cleaner to "help you" (not because she needs it, of course ;) )
If she is almost housebound shes probably quite lonely. Would a befriending service help? In my area Crossroads will offer this and you can get them to come and sit and chatter to her for a couple of hours on a regular basis.
If you want to get care workers involved then you will need to get Social Services to give her a needs assessment. Care workers are usually arranged to help with things like getting people up, washed and dressed and getting them ready for bed again; help with taking meds; bathing/showering; help with food - they may prepare an easy meal (usually microwaved ready meal) and things like that.
Find out if there are any carers organisations in your area and contact them. You may discover that there is a lot going on in your area (a bit of a post-code lottery Im afraid) which could interest your mum - regular coffee mornings etc. My MIL used to go regularly to a Sunday Roast club organised by a local church where she would get a hot roast dinner and lots of social contact - it was very popular.
Finally, you could inquire about possible day-care. This is Social Services territory and there is often a waiting list.
:)
Firstly welcome to Forum and I hope you find it good tool and net work.

Remember the helpline number as they can guide you through much and their number is 0808 808 7777.

Register at your carers centre and get them to arrange a carers assessment as this is based on your need and there is more help their and that about your need as a carer. Also ask them to arrange for independent living in your area to come out and access the home your mum lives in as they can do a lot to make it friendly and workable for your mum and this as a rule is free.

Also tele-care might be able to help a lot and the carer centre in your area might be able to arrange that too. You can call the carers helpline and they will direct you to tele-care. They do a lot of equipment that will help your mum and stuff that will help you check on her without you being at home. I highly recommend tele-care.

Lastly have a welfare rights officer which can be found in the council building and social work office to do a check to see if there is more cash help to make things easier. The carers centre might be able to do that for you too.

Gorden
Welcome to the forum. Try to think of the situation as balancing mum's needs with your own. There are some things which you probably feel you must do, but there are lots of others which need to be done, but not done by you. First, work out what falls into each category, with your wife. Take a few days to think about it. Then you need to discuss it with mum. Say you want her to be near you as long as possible, but you are also getting older too, her needs are increasing and she needs to think about the future. If she doesn't want to be in residential care then she needs to accept outside help as you CANNOT do it all any more. Do you have power of attorney? It is a good idea to arrange this as soon as possible. Support her through the Social Services Assessment process, have you own Carers Assessment too. Mum sounds like she is probably entitled to Attendance Allowance. Support her to claim. Gradually shift from being care provider to care manager, keeping an eye on her of course, but leaving the hands on care to others. I've ended up in the situation where I gave so much care to so many for so long that my health is in ruins and I have no local friends. Make sure that when mum finally passes away you have a social life to go back to.
Hi all,
Thanks for the welcomes, you have given me a lot to think about and to look into, in just three replies.
I will continue to read all of your posts with interest.

thanks again.
I think another way to ameliorate the situation maybe is to create a regular routine with your mother, in terms of any extra outside help. The cleaning lady is a very good start, and, as has been said, your mother won't see a cleaner as 'substituting' for you and your wife, but simply to get some of the 'boring stuff' out of the way. A friend of mine with an elderly father 'home alone' all day also points out that having a cleaner in the house is actually better 'value for money' than a careworker, as the hourly rate is less, and they are in the house for longer. Just having 'someone else' in the house can make your mother feel less isolated. (Plus, she ends up with a clean house!!!!)d

Having someone to do the 'work' also means that time spent with her is more 'non-work', and more companionable.

When you have established external care-workers coming in, say, three days a week, or whatever, then you get a routine set up with your mother that enables you to be quite 'casual' about when you see her - eg, 'Ah, Wednesday is the day that xxx comes in' etc. It enables you to establish clear 'time off' for yourselves in exchange.

Also, maybe you could 'compensate' for taking time off from your mum, by having her over with you on regular days 'Mondays you come over to us, Mum'.....

It is a question of establishing routine, and boundaries, so that your mum knows where she is, and learns to trust that even though you and your wife are not 'on tap' the whole time, that when you go 'off duty' you WILL come back 'on duty' again when your time off ends again, and that should reassure her that you are not 'abandoning' her.

Finally, I know it's hard, but don't expect any gratitude or appreciation! You may get it - it's not impossible - but all too often the elderly and frail do, sadly, become very 'self-focussed' and don't really think, or understand, about the impact their 'needs' have on others. Their world shrinks, and they cease to realise that you and your wife have a life beyond 'looking after her'. YOU have to set the boundaries, and it becomes more and more not a question of 'asking' your mum whether she would 'accept' an outside carer, but simply sorting it out before hand and telling her that it is happening. She may well 'object' for a bit, but familiarity will make it more acceptable - and even if she goes on 'objecting' you will have to hold the line.

The 'deal' is that you will do a LOT for your mum, but not EVERYTHING. Your lives are as valid as hers, and you've had less of them than your mum has!
Hi Signman,

Welcome to the Forum. Yes, regardless of who we are caring for, the feelings of guilt, our lives being taken over by caring etc etc are all the same.

Lots of good advice already. I cared for my mum and yes, the caring needs went up and up. If I had my time over again, I would carve out more time for myself. This depends of course on what is available locally. I too went down the cleaner route (using mum's Attendance Allowance to pay for it) and also used the Age UK Befriending Service (had to pay for that). As time went on, I also contacted Social Services to get a care assessment and care visits.

Time to yourselves is essential for your longterm health and therefore will ultimately benefit mum too. Good luck, Anne x
Another thing to consider is this - how will you and your wife take holidays (eg, at least a week, if not a fortnight)?

Most of us resort to 'respite care' for the elderly caree, and that means they have to spend the time in a care home/nursing home. Respite care is a 'scarce' commodity (!!!!), so carers often have to arrange their holidays around what respite care is available! They get the respite care lined up and booked, and only then put their money down for their holidays!

Many carers report that carees resist to the limit against respite care, but sometimes two things can happen - first of all, it 'teaches' the caree to appreciate what their family is doing for them and not take them for granted any more (!), and secondly, sometimes they actually find that they enjoy the break from home!

One way of 'selling' respite care is to present it as a break for the caree too - that for a week or two they will be waited on hand and foot, and, effectively, have an 'all-inclusive holiday in an old-persons'hotel'.......they also get companionship from other residents and respite carees.

One of the phrases I use constantly to my 90 y/o MIL (who is in an Abbeyfield, but comes to me for 'sleepovers' once or twice a week) about 'why' she has to be there (!), is 'I need you to be somewhere where I know you are well looked after and I don't have to worry about you'....with the emphasis on 'looked after'....

Instead of booking your mother into respite care elsewhere, another alternative maybe to hire in an overnight careworker. That would be the least disruptive for her, especially if the overnight careworker is one she already knows from the day time. Prices will be at least £100 a night for the careworker to sleep over, but that may yet compare equally with the cost of respite??

Finally, one 'alert' when it comes to respite care - you may find that 'mysteriously' your mother takes an unexpected 'turn for the worse' medically just before you actually head for the airport...... Prepare for this and if at all possible, stick to your guns.....
Does mum have a Lifeline? A pendant round her neck which is connected to a special phone, so that in the event of a fall she could summon assistance? Definitely worth looking at, so you can you out for the day knowing that if anything happens to mum, she won't be left lying on the floor till you get back. My mum had one, I can't speak too highly of the reassurance it gives.
Only problem with the Lifeline is if there is dementia, in which case she may not 'realise' she needs to summon help. My SIL's mother had one, and could never use it for that very reason, alas.