Feeling like I can't cope

All about caring
1

I have a 1 year old son and I’m currently caring for my elderly father. I live with my parents in their freehold property. My mum and dad share a bedroom. Recently my father left hospital after getting an infection. My father is now bedbound. He has cognitive issues. He is now home and being giving reablement care so that he get his personal care done ( 2 carers, 4 times a day). My mum has health issues so besides the personal care that the carers do, I do everything else for my dad. I am so exhausted and it’s so hard doing this whilst taking care of my child.

My mum is in so much pain with her issues. She wishes she could help but she can’t. My mum wants my dad to go into a home as she cares only spend 10 mins doing personal care and he is left for over 12 hours overnight with soiled Incontinence pads.

I feel like just walking away with my child but I don’t want to leave my mum in this situation alone. I just don’t want to have a breakdown

2

When was dad discharged?
Did anyone talk to you and mum about his care needs, and your ability to meet them, before he came home?
Ring Social Services and tell them you are caring for dad and mum, and a child, and CANNOT AND WILL NOT care for dad any more. He MUST go into residential care IMMEDIATELY. Don’t let them fob you off with sob stories.

Then ring the hospital and ask to speak to the CEO on Monday, you will end up talking to his PA, which is fine.
Complain using the words UNSAFE DISCHARGE.

If no one gets back to you by Monday evening, consider calling an ambulance.

How old are your parents?
What are their medical conditions?

3

Thank you for your reply.

My dad has Parkinsons and sore on his heel (acquired from the hospital) . He was discharged two weeks ago. He has District nurses come twice a week to change the dressing on his heel and physios coming twice a week.

He was supposed to be discharged before Christmas. A family meeting was arranged by the OT in the hospital. He wanted either my mum or I to attend the hospital to get an update as they kept us in the dark about his treatment most of the time.

I couldn’t make it due to not having anyone to care for my child. I called the OT beforehand but wasn’t able to reach hinuntil 15 mins before it started. The SW called me to do a telephone family meeting. She screamed at me on the phone and told me that my dad would be coming home with carers, a hospital bed and a commode. I said no to the hospital bed and commode and suggested they put my dad in a Step Down bed and then some reablement with carers afterwards. I wanted him to go to a Step Down bed because I thought he’d be allowed more time for the foot to heel plus get some daily physio. They said no to my suggested and said as he was fit to be discharged they would do so and offer him carers.

The carers are really poor. They only spend 10 mins with my dad during his 45 min slot. I don’t think they clean him properly but I obviously can’t check. They don’t wear aprons and don’t wash/ sanitise their hands. I have complained to the agency and a risk assessment was only done two days ago. When I spoke to one of the carers yesterday, he said the risk assessment just chat and nothing will change.

I’m so tired. I am a slave to my house because I don’t know when anybody is coming in. My child is my priority but it’s very hard to be present right now with my child while all this is going on.

I have 2 more weeks left of the reablement care. I’m scared that this will continue indefinitely. My dad just lies in bed and doesn’t move. His appetite is poor and I have to put so much pressure on him to drink water. It’s like my dad has forgotten that I have a child.

Sorry for rambling…do I contact social services now and tell them this is a failed discharge or just wait until the reablement period ends?

4

Sorry…my parents are both 76 years old.

5

The whole arrangement is unacceptable.
Has anyone from Social Services been to see you, done a Carers Assessment?
As for screaming at you. Dreadful. If you go to your council website, search for Adult Services Complaints, you can make an online complaint about the discharge arrangements and her behaviour.

6

Your thread title “feeling I can’t cope” says it all.

You should never have been expected to cope in the first place!
As dad has Parkinsons, I don’t know if the Parkinson’s Society can help at all?
It is a progressive illness, so whatever gains he makes with his health may be short lived in any case.

As far as the carers are concerned, I’d talk to CQC, the Care Quality Commission.
Again, their behaviour is not acceptable!
When my own mum was ill, she had problems and complained to CQC, who listened carefully. I suspect you are not the only ones complaining about this company’s service.

7

I haven’t received a Carers Assessment. How do I get one arranged? I think the hospital just pretty much wanted to just boot my dad out. They were more concerned about whether he could have a micro environment for my dad in the home and didn’t consider anything else. We declined a micro environment because he shares a room with my mum. Notwithstanding that offer, how could my dad be left alone unsupervised throughout the night and between carer slots when he’s bed bound? It makes no sense to me. My mum just cannot care for him and I’m really struggling.

8

Hi Alisha,

There is information re getting a carer’s assessments here Carer's assessment | Carers UK

However, it sounds to me like your both your Mum and Dad need Needs assessments and your Mum should be pushing for your Dad to have residential care, where a team of people will be able to support him 24/7.

You might find talking this all through with the helpline useful

Our telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (> advice@carersuk.org> )

Melly1

9

One question - SS offered a commode, hospital bed and 2 carers, 4 times a day. As I said in my earlier post, we declined commode and hospital bed and said yes to carers. Do SS usually offer 2 x carers, 4 times a day based on the presumption that the family will help between carer visits? Are there any guidelines about care packages and the basis at which they offer certain ones to patients?

Thank you for providing me with Carers UK holiness details. I will contact them tomorrow.

10

2 carers 4 times a day is the maximum, however, that still leaves 22 hours or so a day without any paid care!

As you have a young child who will also want your attention at night at times, who deserves an active happy mum, your situation is utterly unsustainable.

One thing that assessments often forget is that there are also routine jobs around the house that need doing. Things like cleaning the oven, the cooker, the bathroom, vacuuming up etc. etc., the gardening, washing up which you must be doing because no one else can!!

Is your parents house streamlined or cluttered? Do you have a tumble dryer, dishwasher?
Do they accept that they can’t do much in the house any more?
At very least, given their incapacity and the fact that dad is certainly entitled to Attendance Allowance, and probably mum too, they have enough money to pay for domestic help to take that responsibility from you.
Has this occurred to them?

On the subject of money, do you have Power of Attorney?
Do they have over £46,000 in savings (the Social Services limit for contributing towards care in the home).
If you don’t know, it’s time you found out. Social Services will want to do a financial assessment soon.
Mum should gather together all their financial paperwork together, sharing the contents with you.
My in laws still had receipts going back to when they moved into their house, in 1947!!!

My mum was a nightmare after dad died, said she didn’t know anything about anything financial. I was left to sort things out!
First, I had to do a major search for everything, bin all the junk mail and utility bills over 2 years old.

ou are now effectively responsible for both of them, or still expect you to be an obedient child in their hour of need? (Mine did!)

Do you have any time of the day when they leave you in peace to play with your baby, or go out for a walk?

No one wants residential, but those with severe disabilities need a team of carers on call 24/7, and that means residential care.

11

Thank you @ Bowling Bun.

We have a dishwasher and washing machine. The house doesn’t have much clutter.

I only have POA over my mum. I was supposed to sort getting the health and finance POAs over my dad but he’s been a regular customer at hospital with his recurrent infections so wasn’t able to. My dad caught sepsis 3 times last year.

I have no issue helping my mum because she still tries to be independent. My dad however is pretty much like a vegetable. His number paralysed but pretty much doesn’t move. The physio told him to get the carers need to get him out of the bed and help him move a little but he says nothing. I’m with my baby when the carers attend to him so even though I’ve told them, they know they can get away with not doing it…

I think my dad might have early onset dementia but given that he was only discharged recently and had delirium in hospital, I don’t want to rush to get him assessed for his cognitive issues. Do you however think I should? He is bed bound now so not sure how they could assess him in his current state.

I have mum guilt on a daily basis because I think my baby is picking up that things are not that great with me. I have told my mum that when the reablement period ends I will stop helping dad. I wish I could assist but my baby is my number 1. I had to give up my job as an accountant. I was supposed to go back after Mat leave but I can’t afford childcare and also decided I wouldn’t be able to juggle everything plus work. I have just started claiming UC. I live with my parents so have nowhere to go and given the house is not overcrowded wouldn’t qualify for council housing.

My parents aren’t claiming Attendance Allowance. I don’t know much about my parents savings but do know that my parents have a shared bank account. As per your advice, I’ll try to get more info.

12

In these circumstances, you need to get those Attendance Allowance forms completed asap.
As you are so busy, I would suggest contacting the AA Unit and asking for a “Visiting Officer” to call to complete the forms, and also to talk about you become the DWP “Appointee”. Given your accountancy problem, I’m sure they will agree, it’s very simple.

Ask the GP to arrange an URGENT NHS Continuing Healthcare Assessment for dad, tell him you CANNOT care for dad, and neither can mum. Be very firm. Say the same to Social Services.

13

Bowling Bun - your advice is greatly appreciated. Thank you so much. I will contact the GP and SS as you advised tomorrow

14

I called Carers UK. Received some advice.

I complained to the SW told them that I need a Carer and Needs assessment of my dad. The SW says the agency is threatening to withdraw care of my dad because we declined a hospital bed and commode and they say the carers have complained that they’re hurting their backs caring for my dad (even though they don’t lift him and he has a very high orthopaedic bed). My mum shares the bed with my dad. There is no room for a micro environment in the house or a hospital bed in the room.The SW said that we need to make a compromise but there isn’t anywhere for him.

My dad developed a sore on his foot during hospital and fell during his time there. If he didn’t have the sore on his foot or fracture on his hip, he would be mobile like he was before he was admitted in to hospital. My dad is not paralysed, just temporarily bedbound due to his condition.

I’ve told them that if the agency wish to withdraw, they’ll need to find another agency because I refuse to do personal care for my dad and my mum can’t either. I previously asked for a Step Down bed until he gets back on his feet but they declined. My dad has a care need, not a social care need but it seems to be overlooked right now.

I just don’t really know how to deal with this. The carers, District Nurses and physio come when they feel like it and I have a baby to care for.The SW mentioned Direct Payments but I cannot deal with this situation anymore and neither can my mum. I really feel so down about this. Are there any words that I should use in conversations to make them make progress in my situation. My dad really needs residential care right now.

15

Look at the council website, search for Adult Social Care Complaints.

You can complain this way and it goes straight to HQ, not the local social workers. Ask for the email of the Director of Social Services. You should have a county councillor, ring them and complain too. It’s NOT ACCEPTABLE.

I told the Director, years ago, that if he didn’t sort things out immediately I would go to the Press on Friday. The Complaints Officer and Head of LD were told to “clear their diaries” and meet me at MY convenience!!! It worked, all was sorted for a few years then all the staff concerned changed.

My trump card in all this was the fact I’d successfully spearheaded a group of local residents opposed to a waste recycling centre, long story, and the Leader of the County Council knew just how determined I was.
He even spoke in support of our group at a Waste Recycling Planning Committee meeting … never saying that he would be personally affected as he lived on the same road as the proposed site!!

You just have to make it VERY clear that you will not take no for an answer.

16

Alisha, sorry to hear that you are having trouble,some of this so call services that are there to help LIKE SS just make things worst. Take a deep breath before doing anything else.

Ask friends or neighbours for help, even speak to your local councillor ,mp or am and GPS, cares centre for help citizen advice.
don’t be afraid to ask for more help from the carers, as they will help fight your corner.

The SS likes to play games and dirty ones at that which is never nice. There are acts and policy there to protect you and your family.
They can’t stop providing care if you don’t want a hospital bed. you might be in a place where there is not room to fit one or the carers don’t know who to use it. they sound half trained to me or cheap labour just to cover shortages.

take care.

17

Thank you Michael.

I’m trying to take a deep breath but I am so upset.

The Carers come when they feel like it and don’t stick around for long. The District Nurses and Physios also don’t have a set time. I feel like a prisoner in my house. I’m scared to leave just in case someone else has to come and check on my dad. I have written to Adult SS as the SW has not got back to me about what happens after reablement ends.

I just cannot care for my dad. My baby deserves to have a happy childhood and I cannot shift my focus off my baby. As I had to leave my job to care for my baby and my mum before my dad’s health deteriorated to this extent, I have no funds to move out. I am not living in an overcrowded environment and my parents aren’t threatening to evict me so I doubt the council will provide me with housing. I feel immense guilt that I want to leave but my baby and I are stuck for the time being

18

Have you now complained to Social Services as I suggested, via the LA website?

I know you would rather not complain, but at the moment it’s vital, nothing will change unless you put up a fight.
I know you don’t want to fight either, no one does, but your life and your baby’s life are absolutely worth fighting for.

In your recent message you said you have to stay in, in case someone turns up.
Wrong.
Don’t stay in, because it gives everyone the impression that you are there all the time available to do everything that is needed!

No one else wants you to have your own life either, because they like you being a “willing slave”.

When I was widowed I found a book called “Starting Again” by Sarah Litvinoff. Mainly for divorcees, but good for anyone wanting to change things. Very easy to read too.
It talks about working out what you are doing at the moment, and what you want to change.
So start looking at how you are currently spending each hour of the day, then look at what you would rather do instead.
This made me realise that I was spending about 3 hours looking after my son’s partner’s children.
Not just taking them to and from school, but the tea and chat afterwards.
I wanted those 3 hours back - I used the excuse of a knee replacement to give up doing this.

I would suggest that you decided when you wanted to be out and about with your baby in the pram/pushchair, and stuck to it. The fresh air will do both of you good.
Is there a Mother and Toddler group near you? Programme that in too.
You CANNOT spend all your life looking after your parents.

19

Bowling Bun - I’m crying as I type this. Thank you for your words. I now know I can no longer take care of my parents. I submitted my online complaint on Friday but have not heard anything.

The physio jusr left the house. He told me that he knew that our set up would not work. He spoke to the hospital physio who raised a Safeguarding issue. He said that my dad should not have been discharged home in the state he is in. He said that he has recommended reablement to continue with double handed care. I told him that I can’t cope and if there is anyway my dad can go into a rehabilitation unit. He said that hospitals usually deal with that. I really have had enough of this.

Are you saying that if we are not house to answer the door, it will be better? It’ll show them that my dad needs more support?

20

Yes, if your parents cannot even answer the door without you, then that just shows how dependent they are on you.

Both your parents should have an URGENT needs assessment from Social Services which looks at what they can do for themselves, without ANY involvement from you.

Have you asked for a Carers Assessment from Social Services?

I understand that both your parents have serious health issues, but that means they are probably in what might be called “Survival Mode” focussed entirely on themselves without considering how much you are being affected. This is common in the elderly.

If your parents can’t open the door themselves, that can be sorted with a £20 key safe, for example.
That’s a small box on the wall which has a combination lock, and a front door key inside. My mum had one for many years.

Do they own or rent their home? If they rent, there might be a problem looming you need to be aware of.