Carers Assessment - when to get one

[SueLM]

A quick question for all you lovely people. My OH was diagnosed in January 2022 and is in the early/middle stages. He can dress himself and still go for a walk on his own. He can do his puzzle on his laptop and is doing well.

He cant cook, handle his medication, finances etc and he has fewer "conversations" than previously. Its just natural early stages (I think).
So when do I put the wheels in motion for a carers/needs assessment.? Do I wait until I "need" it, or do I get the ball rolling now.

I know my mental health is suffering (but not to a huge degree) and that I am tired, but I do go out without him abut twice a month and he is fine.
Dont want to involve social services yet, but wondered if that is best done early, or just at the point of (near) crisis

 

[canary]

Hi @SueLM OH has carers in to help him wash and dress in the morning. I would strongly recommend that you get in help earlier rather than later. For one thing, a crisis can catch up with you earlier than you are expecting - you dont realise how far along you are until, suddenly, the crisis has arrived.....
Secondly, if you leave it too late your PWD will have got used to you doing everything and will refuse anyone else coming in and doing anything - he will only want you there and it will have to be you all the time. You will have created a rod for your own back.

I started off by getting a cleaner in to help me. It meant that I had a bit more time for other things and it also got OH used to the idea of people coming into out house and doing things. When he needed help showering and dressing I was slow off the mark and a crisis arrived before I knew it. Fortunately, although OH didnt want want carers in to help him, he has taken to them quite well (he didnt actually have much choice). He has also had a couple of periods of respite. I would have liked some during lock-down, but no-one was offering any at that time. Im hoping to get some soon and I would also like some day care - He was just about to start 2 years ago when lock-down put paid to that and now that he has progressed Im having difficulty finding somewhere suitable.

Please dont leave things till you are at breaking point.

 

[SueLM]

Hi @SueLM OH has carers in to help him wash and dress in the morning. I would strongly recommend that you get in help earlier rather than later. For one thing, a crisis can catch up with you earlier than you are expecting - you dont realise how far along you are until, suddenly, the crisis has arrived.....
Secondly, if you leave it too late your PWD will have got used to you doing everything and will refuse anyone else coming in and doing anything - he will only want you there and it will have to be you all the time. You will have created a rod for your own back.

I started off by getting a cleaner in to help me. It meant that I had a bit more time for other things and it also got OH used to the idea of people coming into out house and doing things. When he needed help showering and dressing I was slow off the mark and a crisis arrived before I knew it. Fortunately, although OH didnt want want carers in to help him, he has taken to them quite well (he didnt actually have much choice). He has also had a couple of periods of respite. I would have liked some during lock-down, but no-one was offering any at that time. Im hoping to get some soon and I would also like some day care - He was just about to start 2 years ago when lock-down put paid to that and now that he has progressed Im having difficulty finding somewhere suitable.

Please dont leave things till you are at breaking point.

Thank you. I employed a gardener and a cleaner a month ago to a) genuinely help me and b) so he gets used to some-one coming and going and later I will just say - she left and now we have this new person who will also help you with xyz. Hoping that will work.

 

[Joyorins]

Agree with Canary, get the ball rolling. I feel I left this too late with my mother and we are now in crisis mode and waiting on multiple appointments and assessments. Whilst it does feel like getting into the system too soon could be an interference, you may be glad of it sooner than you think.

 

[Violet Jane]

If your husband is a self-funder then you don't need to involve Social Services. You can just approach an agency and ask for what you want. Agency carers provide personal care and also sitting services. There are also charities that offer sitting and befriending services. If your husband is fit then they might be able to take him out.

As others have said, don't wait until you are really struggling before you get in more help if you feel that you could do with it now. Getting a cleaner and gardener is a good start.

 

[canary]

Thank you. I employed a gardener and a cleaner a month ago to a) genuinely help me and b) so he gets used to some-one coming and going and later I will just say - she left and now we have this new person who will also help you with xyz. Hoping that will work.

Ive still got my cleaner, plus a gardener and a "man wot can" to check my cars oil, tyres etc, carers and hopefully soon some day care. Sometimes I feel like the landed gentry managing staff. I just wish I had the house to go with it!!

 

[extoyboy]

If it's anything like our council then you may have a long wait. I requested both care and carers assessments back in December. I received a call a couple of days later where we had a chat about my wife's situation and they e-mailed over some private care/daycare information but not a dicky bird since then. Apparently they were months behind (COVID, Brexit, whatever other reason).

Fortunately we're not too far down the road so even though I'm a full time carer my wife's needs are more in regard to mobility than anything else now that she's on Donepezil.

 

[marc123456]

If your husband is a self-funder then you don't need to involve Social Services. You can just approach an agency and ask for what you want. Agency carers provide personal care and also sitting services. There are also charities that offer sitting and befriending services. If your husband is fit then they might be able to take him out.

As others have said, don't wait until you are really struggling before you get in more help if you feel that you could do with it now. Getting a cleaner and gardener is a good start.

I would get an assessment with social services next year even if you self provide. You will need to be “in the system” for when the new threshold for paying for services starts happening in October 2023

 

[update2020]

I’ve posted on this so often recently. Get him used to spending time and having fun with friendly companions asap. If he becomes totally attached to you and you only it will become overwhelming eventually. The sooner, the better and then you can build up as needed.

 

[GillP]

@marc123456 , will we need a social services assessment? We are self funding and my husband is already in care home. We have been on their list since last April 2021 and nothing as yet. I fear that now he’s in a home they will not look at him. Also his care home is in a different county to where we live , next door to it so I expect that this may complicate things too.

One problem after another!

 

[Josh60]

My wife was diagnosed with Alzheimers over six years ago. We had someone from Social Services come to see us shortly after her diagnosis and they were of little help. Once they knew that my wife had money in her name, my redundancy pay, they didn't want to know. All that they said was once the money she had got down to the £23 k I should let them know and they would then do a assessment on her. So my advice is get the ball rolling and contact Social Services to see what help they can offer but in my experience it won't be much if you have some money. Best of luck with Social Services.

 

[christine anne]

Hi SueLM,
I got a social care assessment even though I don't want carers yet. I just wanted them to know we existed and if anything happens to me they will know who Mum is. It took 5 months to get our assessment so I would ask for one and get in the system. I got Mum into daycare which she doesn't like but she is not distressed when there so she goes. With lockdowns my Mum got so used to me being there and no one else that it is hard to get others involved now. But my sister comes to relieve me every so often so it helps.

 

[Pots and Pans]

Care needs fit your husband feels pointless if you would be paying yourself - but you may need one later and don't be shy of asking. It is a right and can be done more than once. Carer assessment is different... not means tested and for you, so it helps you to carry on doing the caring role. Again you have right to ask for one but do think what you want out of it. I badly wanted a decent weekly break and time to do something like visit a family member ,- something needing more than an hour or so; end result was funding for a day and I get as a direct payment so if I want to book carers for, say, two mornings instead I can. Invaluable time off and the carers take OH out ( even to pub or museum I would find dull) so he has learned to think of them as friends. It may vary from county to county but I wish I'd got this sooner as it really does help. Tip. When applying think of your worst days, not best.

 

[sapphire turner]

Hi all, I am not coping well with OH (just recently diagnosed with some form of dementia- possibly anterior cortical atrophy? - tho has been going downhill for the last 5 years)
Last week I had a big meltdown and cried for a couple of days, and genuinely wished I was dead. I realise that I really need to get some help in even tho OH is convinced that he is fine. Not sure how to go about it - we would be self funding - as I would like someone to help with the cleaning but also some keeping an eye on OH, making drinks etc whilst I was around but maybe out in the garden. Would it be more of a carer’s role if I left them with him whilst I went to the supermarket? (My special me time ???)
I think I am quite depressed- have been on antidepressants for the last 30 years and can usually keep on top of things- but recent dark thoughts are frightening me. Our GPs are pretty useless, they have helped in the past with sick notes when I was working but retired now and OH is my job. No good getting a sick note for a couple of weeks away from him eh.
Anyway sorry for the long post, I know I need help to organise someone coming in but I need someone to help me do it - it is just sitting in the too difficult pile whilst I go under.

 

[Shedrech]

Hi SueLM,
I got a social care assessment even though I don't want carers yet. I just wanted them to know we existed and if anything happens to me they will know who Mum is. It took 5 months to get our assessment so I would ask for one and get in the system. I got Mum into daycare which she doesn't like but she is not distressed when there so she goes. With lockdowns my Mum got so used to me being there and no one else that it is hard to get others involved now. But my sister comes to relieve me every so often so it helps.

Hello @christine anne
A warm welcome to DTP

I really agree that requesting an assessment of care needs is a useful way of flagging up someone's situation to Adult Services, who can't then say they were not aware ... and a re-assessment can be requested later on if nothing comes of the initial one

I'm glad you were able to get some day care for your mum ... whether she 'loves it' or not, as you say, she's not distressed so it's of benefit to the both of you

 

[canary]

Hi @sapphire turner
Im sorry you are not coping. I think starting getting help in the form of cleaners is a good way of getting him used to other people around.

Would it be more of a carer’s role if I left them with him whilst I went to the supermarket?

Sounds like you could do with a sitting/befriending service. Carers will certainly do this, but other people might too. I cant remember - have you checked whether AgeUK or TuVida will do this in your area? Try googling "befriending service <your area>"

 

[Cariad 42]

I agree with others, start the process now.
We are almost a year into having carers. This was secured through social services with both of us being assessed (me as hubby's carer). We pay the maximum contribution for social services provision (it was means tested). We live in Wales.

The year with the carers has not always been straightforward. We are on our second care company and I have had to learn to be quite assertive with them. They will provide any carer to my husband regardless of suitability and they don't seem to understand the need for continuity. Having someone different turning up each time can add to my stress as I have had to manage hubby's reaction to the arrival of a new face. I also have to explain things to them when they are meeting us for the first time.
I always ask for the rota in advance so I can see what is planned, and I contact them if I'm not happy with it. They have a list if things that hubby likes to do, one of which is watching sport. Whilst I don't mind them doing this some of the time I do expect more effort than this.

I also make sure we get our alloted time. Care companies don't seem to allow travel time between calls which means time can get shaved off each call. I try and "give and take" but make sure over the week we get the hours we have paid for.

We had a reassessment in February as our situation had changed with hubby deteriorating. In addition to reviewing the weekly support we discussed the need for a week's respite so that I can have a break. For the first time I faced the thorny issue of capacity. It was very emotional as I helped the Social worker understand (and agree) that hubby doesn't have capacity to look after himself. I was firm and very emotional about how the lack of help would lead to me carer breakdown (I feel as though I live on the edge alot of the time).

What I'm trying to convey is that engaging carers is the start of a new phase of the dementia journey and it takes alot of effort on the part of the carer to get it working so that it is right for you.

I realise it is different if you are self funding, but I hope my experience is helpful.
Xx

 

[sapphire turner]

I think this is the trouble for me, it all sounds so combative I am not sure I am in a good place to take it all on. And yet what is the alternative? I suppose I need to work on improving my mental health first and sorting it all out after

 

[Cariad 42]

I think alot of the struggle is that we are entering an environment that is new to us all. Also I had the perception that I would have to fight for everything, but to be honest that hasn't been the case. I have found social services to be quite helpful. However, it is a slow process, made worse last year as we were coming out of lockdown.

To help you move forward could you get access to counselling, perhaps through the memory clinic? I have benefitted from this and found it to be good. I've also attended the one of the courses provided by the alzheimers society which was helpful.

I don't mean to overload you with "stuff" because it's all absolutely overwhelming.

Please do start the process of getting some help in, whether carers or a Gardner, or help with the housework. Just a few hours a week will be a game changer for you.

Xx

 

[canary]

I started with carers when I reached carer breakdown and I can honestly say that I have found them a godsend. Yes, its new phase and yes, you have to get used to people coming and going in your home, but I have got used to them and got to know them. Yes, its a pain when you get someone new and you have to show them where things are and explain what the PWD is like, but please dont think that you are getting new people all the time, we usually have a group of about half a dozen carers, although there is some turnover and sometimes you have a different person covering holidays or sickness. They are almost all very good with OH (Ive only had a couple that I havent been happy with) and he has got used to them and accepts them (he wasnt keen to start with)

Please dont wait until youve got your mental health sorted out - I honestly think you will find it very difficult to do in your circumstances - and I found having people around has given me more time and aided my mental health.