What to do if a carer passes away suddenly

[Missodell18]

Hi,
Just looking for a little advice due to this situation happening to a friend recently and if the same happened in our circumstances I really wouldn’t know what to do.

My parents are both in their late 70s. Nearly 4 years ago my mum was diagnosed with dementia and Alzheimer’s. My grandmother had the same but her decline was slow and over quite a number of years, so it’s come as a bit of shock how quickly my mums gone downhill. I would say she might now be in the early late stage. She can’t really communicate anymore - she speaks but it makes no sense and some days seems only able to say yes or no. She’s not really “there” anymore.

My dad is her carer and manages okay but he’s getting on himself. If he suddenly wasn’t there anymore or was unable to carry on as a carer we would be in trouble. I have small children and live in a listed building with lots of stairs, which would be unsuitable for my mum. I don’t feel I could be her carer anyway (for other reasons too), which is really a full time job now.

If we were suddenly in a situation like this, what - if anything - could we do? My mum cannot live independently and needs help with everything including eating and using the toilet.

Thanks in advance for any help.

 

[Sarasa]

Hi @Missodell18 and a warm welcome to Dementia Talking Point.
This might be a tricky conversation to have, but I think you need to start encouraging your dad to have some extra help coming in to help him with your mum. It might be worth contacting their local social services about a needs assessment for your mum and a carer's assessment for your dad. SS are very stretched so it is worth asking for that now as it might take some time for them to get round to seeing your parents. If your mother would be self-funding (having assets of over £23,500) you could arrange some carers off your own bat now. That would help your dad and if there was an emergency they might be able to hold the fort till you could sort out some care.
It might be worth looking at local care homes with the idea of some respite for your mum too. That would give your dad a break and if at a later date your mum has to go into care permanently you'd have some idea about what is available out there for her.
This is a very friendly and supportive community and I'm sure others will be along shortly with their tips and suggestions.

 

[try again]

Carers trust offer emergency care but it's for a very short time

 

[Violet Jane]

Realistically, your mother would probably need to go into a care home as an emergency placement whilst you decided what to do next. From what you say, your mother needs 24 care, which would either be in a care home or at home with a live-in carer.

 

[canary]

Carers trust offer emergency care but it's for a very short time

Tu Vida (previously crossroads) do this too, @Missodell18 , although they are not in all areas. It would be worth checking if they are because you have to register with them beforehand. They will get someone to stay with the person with dementia for up to 48 hrs and will contact a key relative so that they have time to sort out emergency care home/live in care.

I had a similar problem. Obviously I didnt die, but I was suddenly unable to care for my OH. Family had to contact Social Services as an emergency and respite in a care home was found for my OH. It wouldnt have been suitable long-term, but was OK until I was well enough to look after him again. It was a bit of a wake up call to me to get in carers and extra support.

 

[Firecatcher]

Hi @Missodell18 and a warm welcome to Dementia Talking Point.
This might be a tricky conversation to have, but I think you need to start encouraging your dad to have some extra help coming in to help him with your mum. It might be worth contacting their local social services about a needs assessment for your mum and a carer's assessment for your dad. SS are very stretched so it is worth asking for that now as it might take some time for them to get round to seeing your parents. If your mother would be self-funding (having assets of over £23,500) you could arrange some carers off your own bat now. That would help your dad and if there was an emergency they might be able to hold the fort till you could sort out some care.
It might be worth looking at local care homes with the idea of some respite for your mum too. That would give your dad a break and if at a later date your mum has to go into care permanently you'd have some idea about what is available out there for her.
This is a very friendly and supportive community and I'm sure others will be along shortly with their tips and suggestions.

I absolutely dread this kind of situation happening as I can’t imagine social services being all that responsive in finding an emergency bed. I’d imagine the reality being that I’d be expected to take unpaid time off work and possibly risk losing my job.

 

[Cap'n Grimm]

This is what happened to me and how I became mums carer. Dad died at home unexpectedly. In a situation like that the police get involved and they referred it to social services. Well I spoke to them the next morning and the very brief conversation was quite upsetting. All I wanted to know was what sort of help was available. All they wanted to know was how much money mum had and how much their brokerage fee would be. They we’re pushing me fo a decision that would determine the course of the rest of my mums life and the body had only just been taken away. At the moment when you need help ans support the most you’re probably not gonna get it.

The reality is if a main carer dies suddenly you probably will have to drop everything, roll your sleeves up and get on with the business of caring until you can make suitable arrangement. The doctor signed me off sick for a couple of weeks and promised to keep signing me off till I’d managed to sort things out. Now work was a problem for me. They were putting a lot of pressure on me to get back as soon as possible. In the end I never went back.

Turns out that I liked the job of caring. Turned out to be the best things that ever happened to me. Of corse other peoples mileage may vary. But in those immediate few days and weeks before you have a clear idea of what you’re going to do and how you’re going to do it, whether that be a care home, at home carers or just do it yourself, yeah it’s gonna be rough and you’re gonna feel very alone. And it might be the thing that breaks you, or if you want, you can let it be the thing that makes you.

 

[Palerider]

The reality is if a main carer dies suddenly you probably will have to drop everything, roll your sleeves up and get on with the business of caring until you can make suitable arrangement. The doctor signed me off sick for a couple of weeks and promised to keep signing me off till I’d managed to sort things out. Now work was a problem for me. They were putting a lot of pressure on me to get back as soon as possible. In the end I never went back.

This happened to me when my dad died after a three week illness of undiagnosed metastatic cancer. I was left pretty much to get on with it, but was grateful for that, though after the funeral I did ask myself 'what do I do now?'

I made the decision to move in with mum to support her and commute 100 miles round trip everyday for work. It worked for 4.5 years but then mums dementia really started to get a grip of her and we ran into a number of problems that as a sole carer I couldn't keep up with. Its worth bearing in mind that plans can and do change as dementia takes its course @Missodell18

 

[Violet Jane]

It's not uncommon for carers to predecease their PWD, sometimes quite suddenly. It might be wise to investigate options for full-time care now. Even if your father doesn't predecease your mother full-time care might be needed at some point as most families can't care for their PWD to the end as his/her needs overwhelm the family's resources.

The CQC inspects and regulates care homes and care agencies and you can read their reports online. Carehome.co.uk posts reviews a bit like TripAdvisor.

 

[Missodell18]

Thank you for all your replies and advice. Sorry I haven’t been able to respond until now but I followed the advice and we have some people coming from the patients assessment (?) today though haven’t heard back about the carers assessment yet. Thank you all.

 

[SAP]

Some local authorities have a carers card that the carer carries on them so if anything happens to them there is a number to call to alert services that someone at home is in need of support.
For the LA I worked for , emergency plans were kept on file so that if/when the call came the care would be managed as a matter of some urgency and family could be informed. This was a free service for 72 hours so that alternatives could be arranged e.g. a move to a care facility.
If your LA does none of this, then make your own care plan with medication, who to call, who has keys, GP contacts, other conditions etc and let anyone concerned know what their role would be and where the information is kept.

Creating a contingency plan | Carers UK

www.carersuk.org

Carer's assessment | Carers UK

www.carersuk.org