Full time carer

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64 posts
Thanks for the ideas Jenny. Being more in control financially is a must now.

Who would be able to offer free respite care?

I actually really want her home now.
A Needs Assessment for her, and a Carers Assessment for you, are the first steps to getting care and services.
Hi Jaqueline,

Had to reply to your post - I don't often get online these days as my caring role has changed dramatically in the past few months, but am in such a similar position to you I had to respond.

Jenny and Bowlingbun am sure will remember me (Jenny just seen your pm will reply promise!!) I've been living with my mother since 1992. I gave up my flat to move in with her 2 years after my Dad died in 1992. I am now 57 - coming up to 58 in March. The house is hers.

My parents had always been very controlling and manipulative and my mother is now badly disabled due to arthritis in both knees, hips and spine. She cannot walk, and I have to do everything for her apart from at present, toileting (though I do have to empty commode) I did have live in care when she came out of hospital last year. This cost £700 a week plus their food. I'd like to tell you it solved all my problems - but it created new ones as my mother resented the carer bitterly, only wanted me. Many rows and tears later carer left us, just couldnt take anymore of my Mothers ranting and to be honest, we were fast running out of cash.

So I am back to doing it again. Yes I know Jenny, you will despair!! BUT I have a game plan, that may just help Jacqueline too, given our very similar situations.

I HAVE to save my family home. I will simply NOT be homeless in my late 50's after all I have given up over all the years. Now I have power of attorney - and what I am actively doing, is making the house 'nicer' for ME. I've had the garden done up, the patio refurbed. Given that this is now my 'prison' for the next 2.5 years, it might as well be a nice one, for when it is mine at last. I am having the heating revamped so that it actually works properly. Things feel better here now. I still run my own very small business from home 2 or 3 mornings a week - pin money. but it helps. Basically - I am doing what I can now, so that I can preserve my Mothers savings for a crisis for when I am nearer that magic 60. If I need a break - I can afford one. I just go as long as I can then get time off to re charge. Its hard going - but its our homes/futures we are fighting for. Good luck! xxx
Hi Diane, well done!
Thanks Bowlingbun! And for all your wonderful support from the onset. Life was constant hell - now its part time hell - not great. But bearable.

The worst problem I have come up against in all this - if the government/SS appear to be the bad guys..don't underestimate care agencies who charge an unrealistic 'commission' charge - hourly is chronic but weekly not much better. The carers themselves don't get this.. also some agencies bung relatively untrained carers in from lands afar who frankly, are in it for the dosh also. Its a minefield that desperately needs tightening up in my humble etc.

NO other job in this country could you do for the paltry 'pay' a family carer gets and still not be guaranteed a roof over their head at the end of their sacrifice. Criminal!!!!
Just jumping on as I don't get online much either, but very much remember Diane. It is such a horrible situation that your home can be taken after all you have given. As you know my hobby horse is lack of rights for carers. I honestly can't think of a single group of people who's human rights are so disregarded. My Mum cared for my Dad for 10 years, he refused all care to help them as this was his "right". She had none. She now has dementia herself and finally when she can care no more he is in a care home against his will. We should be safeguarding the rights of those who have given so much.

Diane, I completely understand where you are coming from. I completely agree that it is a good idea to spend on making the house nice now. We did this for my Mum. She is still at home alone doing OK at the moment, but as she has dementia so I know this won't be forever.

Do you get any respite? Think about trying to get some in for your own sanity. An afternoon off a week at least?

How is the business going?

Take care

Sally
Thank you bowlingbun will get those things in place once I am feeling better (anxiety has a firm hold today).

Diane, very good idea re house. I am doing the same. The outside is currently being painted (windows were bare wood in places).

My mother remains in hospital as there are currently no carers available who know how to use a rotunda. (I rang today to see if there was any news).

Once the up to six weeks are up we will have at least one carer who has cared for my mum before, poss two.

Sally I do agree that it is a dismally paid job being a family carer with very little upsiide and no proper rewrds that most employees take for granted.

I just hope that I can cope for two more years.
Mother is due home Wednesday. Ie 17th of October. It is going to be quite something adjusting to having home again.

2 carers 4 times a day too.

Not sure what I feel. Unsettled for sure.
Jacqueline,

After mum arrives, it is up to the CARERS, not you, to make sure she has everything done to her that she needs.

I know just how difficult it is to step back, but don't help them do their work. After the first day or two, go out for a walk or the shop while they are there, as your daily respite.

One word of warning though, make sure all valuables are locked away, and there is a lock on your own door to make sure carers only have access to the parts of the house they need. Sadly, my mum lost a number of items from the house garage and garden, because she couldn't walk and see what they were up to. Stupid things like most of mum's cutlery went missing, I replaced the teaspoons with some awful ones from ebay, which strangely enough they didn't nick!!

Four carers x 2 will be the maximum Social Services will provide. If that is not enough, then mum should definitely be entitled to NHS Continuing Healthcare, which has a clause about people needing more care than Social Services can provide. However, CHC is something of a postcode lottery, but worth fighting for, as then the NHS pays the FULL cost of both health and social care needs.
Thank you. Will look into continui g health care.

So the ambulence men came to do an assessment and said that she would be home thursday.

I rang her just now only to be told by the sister who answered the phone that she was coming home today, any time between now and 7 oclock!!!!!!!!! Mother and I are both stunned. She was amazed that she hadnt been told. Me too. The sister appologised, but really.
64 posts