Mum ready for a home, but such conflicting advice

[DougFlo]

Mum has been diagnosed since 2012 and I have seen a substantial deterioration over the last few months.

She lives on her own in a flat in a retirement community, but with no real support included except an emergency call system.

Mum is very socially isolated and complains that she is bored, but then has extreme periods of confusion when she gets so distressed she shakes and is very disorientated.

I am her main carer, as she has no other family nearby. I have recently arranged "home help" type carers to go in twice a day (once at lunchtime and once before bed). The quality of the carers that go in vary enormously, some great some dreadful missing basics like unplugging electrical items at bedtime (E.g the electric blanket, even though it is on a list of things to do)

The retirement centre offer a low level of activities such as coffee morning and the occasional talks and entertainment. So although she complains of being bored and some days is very depressed flinging herself on the bed or slumping and saying she wants to be dead, she refuses to take part in even these low level activities.

I visit every day to make her evening meal, but she still complains there is noting to do.

She had a slight infection over Christmas which made her have hallucinations which meant I was at the house about 5 times a day for hours at a time and until 3am in the morning trying to calm her down and trying to get her to sleep. She suffers from anxiety and has literally bitten off all her fingernails, she is down to raw flesh now.

We had a visit from a doctor from the mental health team yesterday, who has prescribed an anti-depressant. When I talked to him about Mum going into a home (that she confirmed she would like to the doctor) he said that because her "level of care was good" and she hasn't wandered or injured herself he said I should keep her in her own home.

This whole thing is substantially affecting my life and my family. I am constantly tired and probably depressed myself. It is taking more and more time out of my day. I am self-employed but am worried that I am going to start losing clients as I am struggling to provide them with a good level of service too. The worst day recently was 25 telephone calls from my Mum. We can't have days away or a trip as I feel like I need to be within a few miles to react to Mum's calls for help. Can't even think about a holiday or a weekend away. Christmas and New year was ruined for us this year. Got no rest, no break and it just seems relentless.

When any professionals speak to Mum, she has a "polite mode" and she comes across as well, happy with no problems and the professionals seem to listen to her more.

So torn as to what to do. I feel I cannot cope anymore like this. I have varied success with the carers, Mum wants to go in a home so she has company and things to do but the doctor says she should stay in her home.

I do feel like my opinion is the one that matter least to anyone.

 

[Beate]

Her level of care is good because you are providing it! But you are heading towards carers breakdown, plus you have every right in the world to turn round and say you can't and don't want to do it anymore.

Luckily it doesn't matter much what that one doctor who is ignoring your situation says. If she is self-funding, ie has more than £23,250, you can just go ahead and source care homes. Otherwise, your next port of call is Adult Social Services. You tell them they have duty of care for a vulnerable adult at risk and that you want a needs assessment for her and a carers assessment for yourself. You're entitled to one by law so even he she was self-funding they can't refuse you one. Give them a detailed picture. Be clear on what would help - day care, sitters, carers, respite, telecare, OT help or ultimately a care home. It will be the last option if they have to pay for it because it's expensive, but be firm and say she needs a proper, adequate support plan, and you need to be able to continue working and get support yourself.

Good luck.

 

[Chemmy]

Goodness me, this well-meaning advice makes me so cross.

Would your mum cope without your input? Clearly not, so why does a professional on a brief visit seems to think they know better than stressed out family members?

Is your mum self-funding? If she is, you don't need anyone's approval to move her into a care home; not the GP's, not social services. We made arrangements quickly and privately for both my mum and MIL.

So, if that is the case, I would suggest you start looking and asking around, and once you have found somewhere suitable, the transfer can be arranged directly with the manager, who will visit your mum to do an assessment to see that they can meet her needs.

it really is as simple as that, particularly if your mum is already onside.

If she's not self-funding, then unfortunately there are many more hoops to jump through.

 

[Witzend]

I agree 100% with Chemmy.

If she can self-fund, just go ahead. We also did this twice.

 

[MERENAME]

My position is quite similar. Mums phonecall record is 104 calls in less than 2 hours. She is now on mirtazapine which has helped but she still gets up through the night though less than she did. I was self employed but doing less and less work. I stopped just before my Dad died and to be honest thought it would be for about 6 months or so. 3 years later I feel skint and trapped. Carers vary, some really good, some worse than useless.Mum is not self funding. Social work can;t find places for people in hospital and the local care home no longer accepts LA funding. They will not/cannot place her in care until there is a crisis. I spend most of my energy trying to avoid crisis and it has taken over my life. I do not have enough support, my health is suffering and my savings have gone.
If you have the option of a care home then go and visit some and make up your own mind. If you think that;s what is best then go for it.

 

[DougFlo]

Thanks everyone for your advice. It's great to get some reassurance.

The help and assistance from professionals has been minimal and of low value, so I don't know why I continue to listen to them really.

Even Mum's Annual review is so bad that it hasn't recognised any decline over the last two years, which to me is totally bizarre.

I willl continue the hunt for a suitable home. I have to give Mum a better quality of life and support and get some of my own life back too.

 

[Autumn16]

I was in a very similar situation with my Mum up until she went into an CH. I too found that I had to push/arrange or provide all the care she did receive, then was told Mum was receiving a good std of care, although that relied heavily on the support of my brother and I from a distance. We reached the point you have got to when we decided Mum couldn't live safely on her own, even with careers popping in 3 times/day and us 'helping' by phone countless times each day, plus like your Mum she was very isolated. I found a lovely CH close to where I live and she moved 8 months ago. Mum is self funding, it isn't cheap but she is much better physically now because she is eating good meals, is warm 24/7, has company and gets regular exercise. The peace of mind the move has given to us is huge. I visit Mum about 3 times a week which obviously impacts my free time but I don't mind that, she is my Mother after all.