Suddenly I have to take care of my mum, 24-7

[Susannah]

When the health systeme was shut down for "regular" patients because of Covid- 19, my mum got worse, and I had to take care of her. I still do? I'm exhausted, burned out, and in sorrow. I can't go on like this, and I'm desperate for strategies to cope with both me and her. I have contacted all the "social health welfare bla bla bla", but they can't help her cause the nurses can't come at time, and she needs to take her Parkinson medicine every 3 hours. If not on time, the meds won't work. What to do?

 

[mediocre]

It's ridiculous that thehealth system would abandon somebody just because of covid. I wonder how many others have had to suffer like this. I'm really sorry you've had to go through this

 

[Deleted member 1465]

That's awful. I'm so sorry you have to deal with this, I can entirely see how it has happened and you are falling through the cracks.
If you aren't getting anywhere through the normal channels, may I suggest getting in touch first with your local government representative, MP if you are in the UK, then also with the local press, TV and newspaper.
The news channels would potentially Iove a story of someone who has been overlooked and may champion your cause and raise its profile to get you the help you need. It shouldn't work like this, but it's sometimes the squeaky wheel that gets the kick.
It might go nowhere but it's worth a shot. You are correct, you need help and you need people to recognise this.

 

[Susannah]

That's awful. I'm so sorry you have to deal with this, I can entirely see how it has happened and you are falling through the cracks.
If you aren't getting anywhere through the normal channels, may I suggest getting in touch first with your local government representative, MP if you are in the UK, then also with the local press, TV and newspaper.
The news channels would potentially Iove a story of someone who has been overlooked and may champion your cause and raise its profile to get you the help you need. It shouldn't work like this, but it's sometimes the squeaky wheel that gets the kick.
It might go nowhere but it's worth a shot. You are correct, you need help and you need people to recognise this.

Thank you so much. I should actually have thought of this myself, since I used to work in the news dept for many years (journalist), and I have contacts. I must add that my mother doesn't want to be in a care home (as she would have if it wasn't for me). I guess it's kind of my fault not being able to set limits.
Lots of loveS

 

[Deleted member 1465]

Thank you so much. I should actually have thought of this myself, since I used to work in the news dept for many years (journalist), and I have contacts. I must add that my mother doesn't want to be in a care home (as she would have if it wasn't for me). I guess it's kind of my fault not being able to set limits.
Lots of loveS

I worked on a local newspaper for 14 years so a veteran of the shouty newsroom lol.
My mum didn't want to go into a care home but her dementia was so unmanageable, if anyone had lived with her and been her carer it would have been exhausting.
She finally went in under protest, it was a horrible time, but it was a lovely place with really caring people. She hated it sometimes and was happy other times. What it did do is mean that I no longer had to panic over her care every time I went to see her. I spent more and more time with her and enjoyed her company, it was like getting my mum back. I looked forward to going to see her and enjoyed the time we spent together.
Care homes are so expensive though. It ate away her funds incredibly fast.

 

[Fullof pain]

Are there any carer support agencies in your area? They can be a good source of info and support. Can you get a carer's assessment from social work to prioritise your needs ? Does your mum have a care package in place? Where carers could come in say twice a day to do personal care and ease things for you? I've just read this back and apologies for the barrage of questions ! Just trying to think of options for you and I really hope that your situation improves soon.

 

[Susannah]

Are there any carer support agencies in your area? They can be a good source of info and support. Can you get a carer's assessment from social work to prioritise your needs ? Does your mum have a care package in place? Where carers could come in say twice a day to do personal care and ease things for you? I've just read this back and apologies for the barrage of questions ! Just trying to think of options for you and I really hope that your situation improves soon.

Parkinsons is a very complex neurologically disease, and to fully "understand" the condition, it's essential to be specialized in neurology, and know the patients. This means that except for the patients and the neurologist (who have followed the patients for many years, adjusting the meds as the disease worsen), it's the dependents (me) that have the best knowledge. So I provide information to the health workers/home care. They call me and ask for advice, how to get the right meds, and dosage. I fully understand how complicated this disease is, and I'm glad they trust my knowledge. Last home care providers (private company) fucked up the dosage completely, and overdosed my mum for 2 weeks. She nearly died. So even though she can get home care 5 times a day, they just aren't qualified to handle her.

 

[Deleted member 1465]

We tried home care for my mum. It didn't work out, she actually physically threw her carer out, who ran away in tears.
No easy answers. Is there a way you can at least get some cover care in for some respite for yourself?

 

[Susannah]

We tried home care for my mum. It didn't work out, she actually physically threw her carer out, who ran away in tears.
No easy answers. Is there a way you can at least get some cover care in for some respite for yourself?

I know there's no answer or good solution, and I know I'm not alone with this issue. I started the appliance process for cover care in january, but in the municipality where I live, it's very difficult to get paid for caring, and the bureaucracy in Norway is crazy.

When Covid- 19 shut down Norway, all health workers were told to prioritize pandemi- related matters, to face a possible catastrophe of infected patients, and mass deaths. Everyone else in need for health services were neglicted/ put on hold, for 3 months. Norway have ca 260 deaths related to Covid- 19. Infection never peaked, and health workers really didn't do much in this periode. Now, on the other hand, they're overloaded, due to the neglection of elderly people, chronic ill persons. All care homes, rehabilitation centers, hospitals and psyc wards are full, and it's summer holiday...

 

[Deleted member 1465]

Yeah, that's bad and it doesn't surprise me. In the UK our government threw the aged demographic under the bus to protect the NHS. Told them to discharge infected patients back into social care without testing, so they could prioritise those more likely to survive. It was nothing if not expedient. Then they lied about it on national television.

I can only sympathise. We did our best for my mum and we were lucky to find an excellent care home and that she could afford it. I also spent a four year battle with the health service over here care fees.

I really hope you find a way to cope with what you are facing. I'm sure your mum appreciates what you are doing for her.