Struggling to care for elderly mother

[MummyLE]

This might be a long one but I'm hoping to get some advice for my mum.

My Nan had a stroke around a month ago and hasn't been great at all since she left hospital. She has daily hallucinations and irrational thoughts (she has said several times that she thinks that her family are going to kill her - no violence ever so I don't understand why she thinks this).

She was originally staying with my parents but my mum moved back to my Nan's house with her after a few days to hope the confusion would stop but it hasn't. Most days, at night time, she is convinced she is not staying in her own home. The other day she thought she was staying in a pub and is still convinced this is where she stayed.

Basically, my mum works FT (at home at the moment) but is also living at my Nan's. This is having an impact on her relationship with my dad as they never see each other and also my mums health (she has also previously had a stroke although not as bad as my nans). I try to help where I can and have stayed a few nights but I live an hour away and I'm 32 weeks pregnant. My mum has no other siblings so it's all left to her.

Has anyone else had any experience with parents have a stroke? Did you have to stay 24/7 or did you just go around for meal times, etc?

Nan seems to be fine in general during the day and so I keep telling my mum she should pull back a little and leave her for an hour and gradually build it up and let carers do more. Does anyone have any suggestions for dealing with this? Thanks!

What care assessment/care package does she have? Does her GP/whoever is responsible for her post-stroke rehab know about the enduring confusion and delirium? I'm sorry to say it sounds as if she has some permanent brain injury - was this known at discharge?

@Purplewithred thanks for responding so quickly.
At the moment, she has carers coming in twice a day. We've asked for additional help but they can only offer carers to come an extra 30 minutes twice a day. This would barely allow my mum to get to her own home as she lives on the other side of the city.

We've told the stroke team and they have said they'll get in touch with social services and even suggested getting here tested for dementia. I know this can be a very long diagnosis though!

It's strange because she has the confusion in hospital but the hallucinations have only started over the past 5 days. The stroke team said they would usually expect this immediately after the stroke, not 3 weeks later.

Can she see a GP? Maybe she needs a test for a UTI.

She got tested for a UTI the other day and they found nothing unusual. They also took a blood test and we have to ring the GP tomorrow for results but they did all these before she left the hospital so can't imagine they'll find anything now

Check her for uti this can cause someone to be really poorly

The NHS/council/CCG will do the bare minimum that they can get away with, if your Mum is looking after her.

If you want a dementia diagnosis (sounds likely) then you have to get that going with her GP. Who should then refer her to a psychiatrist who specialises in older people.

You won't get any more care, unfortunately, unless there is a crisis and other professionals are aware. You need to ask for a refferal to Adult Mental Health social services.

Basically, you are now at the beginning of a learning curve and remember that nothing will get done unless you push for it.

Sorry MummyLE just see she has been checked for UTI.

It sounds unsustainable for your Mum with this level of support, would she consider residential care ?

Social services referral a must and an assessment of need.

Three calls of thirty mins per day likely to be the upper level of home support.

I would be worried about her at night from what you are saying

Diagnosis will only help her so far tbh.

Thoughts are with you all
It is so difficult 😞

Unfortunately as a PP said, social services will really just wash their hands of it if they know your mum is doing everything. They will only step in if forced to do so by your mum withdrawing care. She then becomes a vulnerable adult and they have to intervene.

FWIW I wish the system were able to work more with families to provide proper support in partnership rather than waiting for crises to occur. By that team everyone involved has been through the wringer and it becomes so laden with negative emotions.

The notion that it’s best to keep people out of residential/nursing homes is not true and often patients do really well in the right care home.

The notion that it’s best to keep people out of residential/nursing homes is not true and often patients do really well in the right care home

Have to agree with this.

Your nan wouldn't expect you all to carry on like this indefinitely surely?
You're probably ultimately looking at residential care for her own safety. This may happen quicker if your mum steps back. Hard to do.
Ageee, ss will do the bare minimum whilst family prop the situation up. It isn't sustainable.
Anyone have power of attorney? Does she own her own property?

Thanks everyone! We have definitely considered residential care if this carries on long term as it's just sustainable but my mum has always promised my Nan she would never take her to a home so it's just a difficult decision for her.

I'm already trying to push my mum to do the care assessment and to get more help. I'll take your advice though and keep pushing until we get answers!

Also no PoA but she does own her own property so I imagine this will be taken into consideration if residential care becomes likely!

I don't know why people are so against homes. Homes are brilliant.

Two of my relations, who have dementia, are so well looked after in their homes. And they're actually happier in them than they were when they were struggling to lead daily lives, even with support.

My dad flourished in a home. It was all designed for people with dementia, the staff were experienced at dealing with all his challenges - despite us being concerned about some of his behaviours there was nothing they hadn't seen before and an amazing activities coordinator had them all participating in suitable activities that they enjoyed.

My MIL was also much happier in a home than in her own home - dementia and other health problems. Looking after her when he had a young child with additional needs nearly broke my husband - constant worry about her delirium, wandering, dangerous behaviours and depression. Things were much better when she was placed in a home by SS after having an accident when she was roaming. I wish she’d gone there 18m earlier.

Agree with you both. I have now told my family that they can put me in a home whenever/as soon as it's necessary! All your housework done, meals cooked, people there to be social with, TV to watch all day if you feel like it, a private bedroom... heaven.

The hallucinations could be a side effect of her stroke:-

www.stroke.org.uk/effects-stroke/hallucinations-and-delusions

Alternatively, it might be delirium which looks like dementia and is really common in older people especially during/after a hospital stay:-

www.alzheimers.org.uk/get-support/daily-living/delirium

A relative developed delirium following a stay in hospital. It lasted several months. It's a bit disturbing but not necessarily permanent.

How has the stroke affected your Nan? Is she able to do things for herself or does she need to be supervised? It is possible to make a good recovery from stroke so don't assume that she needs carers to do everything for her. There should be a community stroke team or stroke nurse who should be able to advise/assess her at home. I would be inclined to speak to her GP in the first instance.

I think caring for someone with this level of need can create huge problems for everyone and isn’t even necessarily best for the person concerned.
Strokes can lead to a consequent dementia. That won’t get better but is likely to progress. It might be better to get proper support arranged before your mother becomes ill herself.

The first step is a proper assessment of need. The local authority can arrange that.

If your grandmother has sufficient capacity then it would be helpful for her to give LPA to your mother, to allow her to make welfare and financial decisions. You can do that very easily without a solicitor if your granny can understand what she is doing.

Then consider perhaps ‘convalescence’ in a residential home. Selling it as a trial period until it is clear what level of independence she may regain. Your grandmother may actually like more company, greater support throughout the day, regaining the daughter/mother relationship. There are some very nice homes out there - far more than the scaremongering tabloids would have people believe.

It is too much for your mother. It’s not good for anyone and leads to burnout, stress becoming unpleasantness and a feeling of resentment. Persuade your mother the promise was made without any real understanding of the reality.

Have you claimed Attendance Allowance for her? It is not means tested. You need to fill the form in with every little detail of her care. Google it.

If you cannot provide the care and she medically needs it they will pay for residential care but they won't offer generally. I think you as a family need to make a decision with guidance from her care team as to what to do

• is she likely to gain function?