How can I support my elderly mum living alone after seizures?

[ElderFlour88]

My mum (79) lives alone. I live five hours drive away with my family. She had a seizure in early January, she was taken to hospital but discharged as there was no damage to her brain or heart. She gradually recovered and has been living life, going to activities, gardening, seeing friends, shopping etc. Totally independent.
She has since had another two. She wants to stay in her own home and doesn’t want to take medication as it makes her depressed and anxious, which she really struggles with.
Her neighbours check on her but the last seizure happened while I was talking to her in the evening. If it had happened any later she could’ve been laying there all night.
What have other people done when they live far away? The hospital have previously recommended a panic type button, which I researched. Do these work? They range from £200-£500 a year.
Can she hire a carer for a few weeks and then go back to living independently?

I would ask adult social care for their advice.

But yes, I would say a pendant alarm and a key safe would be a really good start.

An Alexa in each room that you can connect to one at your house and she could contact you via that if she fell and were conscious?

If she has the money I’m sure you can hire a private carer for any length of time.

Can you put cameras in & get her a smartwatch with a fall alarm on it? That way if you got an alert you could at least see where she was, get a keysafe outside so if you ever needed to call an ambulance they could at least get in to treat her without having to break in.

She is on her state pension, definitely doesn’t have lots of money unfortunately. I’m looking into carers now but feel overwhelmed as I feel she needs something now but everything seems to take so long.
Im not able to stay with her for more than a few days, I did do this but if it is regular I just wont be able to.

A key safe is a great idea, thank you.

She needs a neurologist to explicitly tell
her the dangers of not taking anti epileptic medication. Have they diagnosed the reason why she is having the seizures? Some conditions which cause seizures don’t always have medication. However, it sounds like she has been recommended them? Has she exhausted all
possibilities with medication?

Living independently when you’re at risk of seizures is very risky. She must have a full
occupational therapy assessment of her house. She must not drive or take baths. Lots of options in terms of alarms etc but seek advice from occupational therapists.

Ime the council run telecare schemes are far better than private ones. I would be getting that sorted as a priority - one with a falls sensor and ask the team about any specific sensors that might be people for people who have seizures. She will need a key safe for telecare

A referral to adult social services for a care needs assessment would be a good idea - you can self refer for that but waits can be long so get it done asap

Thank you for this. I absolutely agree, and have been trying to persuade her. The GP prescribed medication for high blood pressure but she stopped taking it.
The neurologist wanted to do more tests but she refused.
I think she is probably in denial as she wants to stay in her home.

My DS is 14 and has epilepsy, we use cameras in various rooms of the house and can see if he's had a fit (we mainly use it in his bedroom for night time fits but occasionally if he goes downstairs and we're e.g. still in bed we'll check the camera in the play room.
We can check them from our phones when we are out of the house too. This might work for you.
Forgot to say a lot of parents of DCs with epilepsy use seizure alarms on Apple watches. I'm not sure how much day to day sync they need though. We haven't considered it because DS wouldn't take enough care when wearing it, though we'd be able to handle the sync but you might find it needs more fuss than your DM would manage.

Have a look at attendance allowance- non means tested benefit, which would help fund some support. Age uk or carers uk can help complete the forms.
I take it she doesn’t drive?

We have a local authority alarm system in place for FiL. They are brilliant & incredibly kind. They can speak to FiL if the button is triggered and will go straight around if he doesn't respond, using the key safe. I'm sure they have a falls version as well as the "press the button" version he has. FiL is completely housebound and only has a cat for company.

Can relate to the 5 hours away problem. He's on an island and we're on the mainland. They wanted a local responder on the island, but we had to explain that there was literally nobody except us, as his 2 other family members are 4 & 12 hours away respectively.

His next door neighbour (equally elderly) contacts us if FiL hasn't drawn his curtains in the morning or evening. His odd job man alwsys checks up on him if passing. We phone every night.

Also my young adult nephew with epilepsy has cameras in his bedroom and sensor mats in his bed. He can only ever be in a room by himself overnight, otherwise his mum, dad or a carer is always with him.

Thank you, I wasn’t aware this could be used to get carers, I thought it was for family member carers.
She doesn’t drive no.

The thing I would press with your mum is that if she takes medications and engages with the tests then she is more likely to be able to stay in her own home as a risk assessment can be done and the medications reduce the risk of seizures happening. Being in denial and not engaging is the worst thing as

1. She is more likely to have seizures and if they become more frequent or prolonged then she may have less ability to live independently
2. if she has a seizure whilst walking down the stairs or similar then she may irreversibly injure herself

it is so frustrating! My mother was in denial about her heart and lung condition, stopped taking medication, made no lifestyle changes and had a cardiac arrest age 62. I am a paramedic too and see this all too frequently.

Attendence Allowance is not means tested. It's designed to help with all those little extras needed. My mum is cared for by my dad (both in their 80s) , but it gives enough for mum to receive a visit from a carer twice a week to help her shower or bathe & helps maintain her dignity.

The form is long winded and needs details of all hospital visits, medication and what she can & can't do.

https://www.ageuk.org.uk/information-advice/money-legal/benefits-entitlements/attendance-allowance/

Attendance Allowance (or Pension Age Disability Payment as it's also known) is paid to your DM and assuming she qualifies (very likely) she can spend it on whatever she likes.
Also highly recommend all the things PPs have mentioned: Age UK, local authority pendant alarm & keysafe, care needs assessment and occupational therapy support.

Thank you so much everyone for taking the time to answer and for your expertise. I’m extremely grateful ❤️

I would recommend you get your mum an epilepsy pillow so that if she has a seizure in her sleep she won't suffocate.

The alarm system is a must, I think.

Adult social care should do an assessment and make recommendations about her care needs. You can refer her if she agrees.

She should keep a diary of her seizures to see if there is a pattern.

Move clutter like low tables out. She should shower, sitting on a small chair - no unsupervised baths.

My daughter has epilepsy - i really sympathise.

This sounds exactly like our set up. She has neighbours who check her blinds are up and we have each others phone numbers, they were straight round and called the ambulance last time which is lifesaving. She has regular groups that she has to confirm attendance to and if she doesn’t they call or pop round. People are so unbelievably kind.

We had the local council alarm for my Mum and they were brilliant. I think it cost about £20+ per month.

Fab, thank you! I’ve just spoken to a lovely man at her local adult social services and he has said the same.

These posts always make me laugh - just call adult social services. Good luck with that. My parents died within 16 months of each in 2023 & last year. I won’t go into the details. I live over 200 miles from them. I’m a LO. I saught help support and advice from everyone I could think of & suggested to me. There was nothing. The cupboard is bare.

Well to put it simply, the longer you wait to contact SS, you’ll have to wait even longer for any support.

Something like epilepsy tends to go to the top of the pile in my experience.