[Misc] Advice on elderly parent / (possible) dementia / hospital discharge type stuff

[Seagull's Return]

Bozza, I can’t add anything of practical value to what’s already been said on here, except to add my voice to the “look after yourself” thing. My father had a stroke a few years ago and has vascular dementia; living abroad I haven’t shouldered the main day-to-day burden, my sister has. She is a strong and capable woman, but it has cost her a lot nonetheless (I’ve found it hard too, it’s a stressful time for everyone of course - but the relentless attention to care and responsibility is extremely wearing).

Basically, as I’m sure you already know, it’s a hard row to hoe, but a necessary one: I really do wish you and yours all the best.

 

[Eric the meek]

Excellent advice, and I'd echo what @Eric the meek says about Attendance Allowance. Its a 30 page form, and you have to provide medical details about what your mums needs are. Age UK charities can help completing. Once in place though she could get £108/week if she needs a lot of care to do the basics. This continues if she moves into a home, although it's reduced if it's a home paid for by Social Services.

Another thing about looking after yourself. Councils have carer services with help for you including drop-in carer coffee mornings, discounts at local venues and advice.

Thank you for the mention, but it wasn't me who wrote about Attendance Allowance - that was someone else.

 

[BrightonCottager]

Thank you for the mention, but it wasn't me who wrote about Attendance Allowance - that was someone else.

Sorry, my mistake. It was @NS Herald . I've corrected my post.

 

[jakarta]

PS : Thanks for all of the stories and advice on this thread and everyone willing to share their experiences. As said going through something similar as @Bozza with my Dad and it’s been a heartbreaking , useful and supportive read. NSC can be such a kind place sometimes…

We only moan about BHA really, there are some very good and well informed people out there!

 

[FamilyGuy]

Very sad to hear your situation. If she is in this state all the time and it is not just post-op delirium/caused by medication, then I think they should really be recommending she goes into a nursing home or specialist dementia home. It might not seem to be the kindest solution, but you can still visit her every day and you know she will be being looked after. It is unfair to expect you to look after her at home, even if you have daily carer visits. My mum had a major op in her 80s, and although she was in a reasonable state mentally after the op, physically she wasn't, and they arranged for a fast track into a nursing home. Although she sadly never made it, we were pleased and relieved at the time that this outcome was offered to us.

Very similar to what happened to my old mum (and to us). Mum also went into hospital (again) after (again) falling out of bed in the middle of the night, (Me: mum why didn't you press the emergency alarm on the necklace around your neck? Mum: well I didn't like to disturb anyone and I knew you'd be here mid morning ) where the doctor advised us that she shouldn't/couldn't go home-alone. We used Social Services and Age Concern (or whatever they're called nowadays), all vg.
We had a PoA in place (luckily) and my mum was sufficiently lucid (temporarily) for me to have the conversation with her about "living in care". The local council paid for some of it and we subbed the rest. She first went into an almost local NHS (foc) Care Home for a couple of weeks before a better/closer room became available to us/her.
Fortunately for my mum ( and for me and my 4 other siblings), one of my sisters took it upon herself to twice daily visits (I was still working and I live 80 miles away).
Long story short, after a few hiccups that my sister sorted out, mum was happy, well looked after, safe and well. However her dementia got worse, but never "excessive". Beneath it all she kept a wicked sense of humour.
She died "happy", with/of cancer and dementia a week or so after the council funding was reduced. This all happened a few months before Covid, for which I am eternally grateful.

I don't know exactly why I've shared this with you, I don't know that it will help you. But strangely, typing it out has helped me a bit.
Thanks for that, and the very, very best to you and to your family.

 

[FamilyGuy]

Very sorry to hear this @Bozza . I've been through something similar with my mum and I echo the advice of others:
- get private carers in as a short term measure
- get POA (takes half an hour online to do the form on gov.uk then find witnesses to countersign)
- try to get a dementia assessment arranged
- get checks for UTI
- research care homes in the area
- get in touch with social services
- Alzheimers society and Age UK websites are very good. The NSC equivalent on Alzheimers Society is almost as useful as NSC!

Yes, yes, yes.
Do all these things.

 

[Dick Knights Mumm]

Sorry to hear about all this my old fruit. Some great advice on here. I can’t add anything other than things are not always as they first seem. These are complicated areas and it’s easy for even health professionals to set out down the wrong path. You’re a good man.

 

[Arkwright]

My Mum is 93, about 4 years ago she fell and broke her hip, she was still driving and doing voluntary work well into her late eighties and is very independent.
The fall really hit her confidence and she only gets out a couple of times a week for a lap of Tesco.
She still lives alone in the family home and would refuse any help, so is very dependent on the family. She has visits a couple of times a day from me, my brother and other family members but if I'm honest it's getting harder, she just lives in a small bubble and has very little to talk about.
It's my Mum so I'm not complaining but at some stage we will need some help but my fear is that would be the end of her.
Recently I popped round and found her on the floor called the ambulance and after a hospital visit they said she is good for her age.
It's so tough for all concerned, I think she needs more help, however she simply won't accept it, pride can be an ugly thing.

 

[Bozza]

Thanks so much for all those who have been in touch over the last couple of days, via this thread personal message and email. I've not had the time to respond as I should but I need to say that it means a huge amount.

I didn't go to visit my mum today - I just needed a day off. Twice this week, coming home from Crawley Hospital, I all but fell asleep behind the wheel. I'm drained. My aunt and cousin told me to stay at home and they would go and spend time with my num.

I've spent the evening with good friends - @Papa Lazarou, @Soul Finger and @Insider, talking all things Abion over the last 30 years, and nothing makes me happier than chewing that particular cud.

Thank you everyone x

 

[Dick Knights Mumm]

Sounds like just what was needed.

 

[Tom Hark Preston Park]

My Mum is 93, about 4 years ago she fell and broke her hip, she was still driving and doing voluntary work well into her late eighties and is very independent.
The fall really hit her confidence and she only gets out a couple of times a week for a lap of Tesco.
She still lives alone in the family home and would refuse any help, so is very dependent on the family. She has visits a couple of times a day from me, my brother and other family members but if I'm honest it's getting harder, she just lives in a small bubble and has very little to talk about.
It's my Mum so I'm not complaining but at some stage we will need some help but my fear is that would be the end of her.
Recently I popped round and found her on the floor called the ambulance and after a hospital visit they said she is good for her age.
It's so tough for all concerned, I think she needs more help, however she simply won't accept it, pride can be an ugly thing.

Does she have a wearable panic button so that she can alert someone if she has a fall? That would be well worth investigating IMHO

 

[Tony Le Mesmer]

You know this so brings out the best of NSC when you know you're not alone....

Sorry to hear your woes Bozza, had similar struggles with my Dad and Uncle in the last year or so.

My Uncle lived alone in Hove and had no dependents or partners ever. Saw him at Albion matches a few times a year but not much contact living so far away. Neighbours managed to find our contact details and alerted us to his situation.

At a similar time our Dad was diagnosed with vascular dementia as was having patanoid thoughts about the neighbours. He lived alone in N Somerset. Myself and Brother live about an hour away.

We've had to set up POA's for both and encourage both to complete Wills (unsuccessfully with Uncle as he was too far gone). Just got his POA in time for Finance and Property but he was found walking the streets of Hove in the middle of the night by the Police which wasn't great but in a way was good as it meant the authorities had to deal w
ith him and not send him home alone as its a safeguarding issue etc...

Diagnosed with Alzeheimers and is now residing in Fairdene Lodge, Hove. Doesn't have a clue who we are and doesn't make coherent sense.

We took all advice from charities, Alzeheimers, Age Concern etc as we weren't too sure we missed the boat with POA's etc

My Dad was able to live with the diagnosis alone for a while until he wasn't coping at home so I organised home help for him every day to ensure he took his medication and other tasks....this was a painful process which he was confused with also - and saw the bills for too.... After 6 months it became more unmanageable for Dad with the police calling round as he wasn't waking up so he went into a dementia respite home near my brothers in Cheltenham. This was £1650 per week. We were shell shocked at the cost and so I took it upon myself to look around in South Wales and found one (after dozens of visits) that seemed pleasant, had availability and was more affordable and a short drive away. Its still a lot of more for self funders....

Obviously, it was hard for him to move but he has now settled in well, eats good and was the right thing to do in hindsight. He has good and bad days. Talks about the Albion from time to time. Thinks his parents are still alive and that he also works at the home. Occassional paranoid thoughts. He thinks I work there too as I'm referred to by staff.

Its no lie, its really quite draining emotionally at times - also manging his finance affairs etc and getting it under some form of control. Look at it as a new chapter...

My brother looks after our Uncles affairs...which massively helps.

Main advice:
Sort out POA pronto - it's not too late!
A Will too - if she hasn't completed one depending on her asset situation
Attendance allowance is fairly simple to complete and backdated to application date. We weren't aware of this from the off...
Speak to charities/Citizen advice to get a fuller understanding.
Remember you are not alone....

All the best and Good luck!

 

[METALMICKY]

One of the key problems with dementia sufferers is the propensity to open external doors and to just go for a wander. Twice my mother in law decided to go for a wander and had to call the police. No matter how attentive any home help may be it's easy for them to slip out in a second.

Sadly my mother in law had to go into care as her dementia worsened and she become aggressive.

OK to my point. I have two Mat On Guard floor sensor mats specifically for elderly or dementia care patients. It comes with a plug in receiver plus two portable wireless receivers.You can use to alarm exit doors if they try to leave or alternatively you can place either side of a bed if you need to be alerted that they are getting out of bed.

Wireless Pressure Mats Archives

matonguard.co.uk

This item is free to collect from Eastbourne . I would love a fellow Albion fan to have this to help cope with such a horrible condition. Please PM me if you are interested

 

[Arkwright]

Does she have a wearable panic button so that she can alert someone if she has a fall? That would be well worth investigating IMHO

Funny, she does wear one, but didn't want to press it as she didn't want to bother anyone. They are a tough generation.

 

[Tom Hark Preston Park]

Funny, she does wear one, but didn't want to press it as she didn't want to bother anyone. They are a tough generation.

Bless her

 

[LamieRobertson]

Thanks so much for all those who have been in touch over the last couple of days, via this thread personal message and email. I've not had the time to respond as I should but I need to say that it means a huge amount.

I didn't go to visit my mum today - I just needed a day off. Twice this week, coming home from Crawley Hospital, I all but fell asleep behind the wheel. I'm drained. My aunt and cousin told me to stay at home and they would go and spend time with my num.

I've spent the evening with good friends - @Papa Lazarou, @Soul Finger and @Insider, talking all things Abion over the last 30 years, and nothing makes me happier than chewing that particular cud.

Thank you everyone x

Hope you don’t mind me asking, but wondered if you’ve made any progress with support for when your Mum does come home or if any decision has been made on when that might happen.

Ps ..hope you’ve had the chance to ‘recharge’

 

[Bozza]

Hope you don’t mind me asking, but wondered if you’ve made any progress with support for when your Mum does come home or if any decision has been made on when that might happen.

Ps ..hope you’ve had the chance to ‘recharge’

Thanks for asking - I was going to update when I got the chance, but I'll do so quickly now...

My mum is going to come home, and we're working on that currently.

Social services are going to put in a "long-term package of care" which will involve a carer visiting 3-4 times a day to help and assist. The hospital have provided a few bits of kit for home and I'm buying various other things - bed movement sensor, motion-sensitive night lights, a baby monitor, floor crash mats and a small bed rail/handle etc

I don't know how it will work when she is home, but we have to try to make it work.

Mum's social worker also told me yesterday that she's happy that my mum wants my help in managing her affairs, and would support me applying for a Power of Attorney, so I'm also getting on with that.

I think it will still be a few weeks until she is discharged from hospital - she won't come home until the carer visits are scheduled and in place.

In terms of my mum's mental state - it's still pretty poor. I'm up at Crawley Hospital daily, and each day brings a series of weird and wonderful stories. This week she's been to Italy but the weather was rubbish so she came home, been arrested for smoking (she doesn't smoke) and spent a night in prison and seen off some local schoolchildren who were up to no good in the hospital.

She still tries to move without her frame and has to be reminded each time.

Our hope is that once back in familiar surroundings (if she does even remember them), then her mental state improves. It is just a hope. however.

I'm heading up to Crawley Hospital now to see what today brings...

 

[nickbrighton]

@Bozza
Its a horrible time for you, and there is very little any of us can do or say to help. My mother also suffered from this horrible illness, and I know just how upsetting it can be.
I was given some advice by my sister who always seemed to cope much better than I, and I offer it to you . It actually did help me to cope

Be there for your Mum when you see her, do everything you can, BUT you have to look after yourself. When you close the door and leave, you have to do just that mentally as well as physically, hard as it may be. Try not to think about it, try not to feel guily, helplessness, just take time for YOU, and go about your life as best you can. Dwelling on things helps niether your Mum , nor you.

 

[LamieRobertson]

Thanks for asking - I was going to update when I got the chance, but I'll do so quickly now...

My mum is going to come home, and we're working on that currently.

Social services are going to put in a "long-term package of care" which will involve a carer visiting 3-4 times a day to help and assist. The hospital have provided a few bits of kit for home and I'm buying various other things - bed movement sensor, motion-sensitive night lights, a baby monitor, floor crash mats and a small bed rail/handle etc

I don't know how it will work when she is home, but we have to try to make it work.

Mum's social worker also told me yesterday that she's happy that my mum wants my help in managing her affairs, and would support me applying for a Power of Attorney, so I'm also getting on with that.

I think it will still be a few weeks until she is discharged from hospital - she won't come home until the carer visits are scheduled and in place.

In terms of my mum's mental state - it's still pretty poor. I'm up at Crawley Hospital daily, and each day brings a series of weird and wonderful stories. This week she's been to Italy but the weather was rubbish so she came home, been arrested for smoking (she doesn't smoke) and spent a night in prison and seen off some local schoolchildren who were up to no good in the hospital.

She still tries to move without her frame and has to be reminded each time.

Our hope is that once back in familiar surroundings (if she does even remember them), then her mental state improves. It is just a hope. however.

I'm heading up to Crawley Hospital now to see what today brings...

Thanks…..an uncertain future ..but plans and support much further on from when you started this thread, which is a big positive …it’s a reverse isn’t it from Mum who looked after you when young,,now it’s the other way round and naturally you will want to do as much as you can, but make sure you are kind to yourself!

 

[Giraffe]

Thanks for asking - I was going to update when I got the chance, but I'll do so quickly now...

My mum is going to come home, and we're working on that currently.

Social services are going to put in a "long-term package of care" which will involve a carer visiting 3-4 times a day to help and assist. The hospital have provided a few bits of kit for home and I'm buying various other things - bed movement sensor, motion-sensitive night lights, a baby monitor, floor crash mats and a small bed rail/handle etc

I don't know how it will work when she is home, but we have to try to make it work.

Mum's social worker also told me yesterday that she's happy that my mum wants my help in managing her affairs, and would support me applying for a Power of Attorney, so I'm also getting on with that.

I think it will still be a few weeks until she is discharged from hospital - she won't come home until the carer visits are scheduled and in place.

In terms of my mum's mental state - it's still pretty poor. I'm up at Crawley Hospital daily, and each day brings a series of weird and wonderful stories. This week she's been to Italy but the weather was rubbish so she came home, been arrested for smoking (she doesn't smoke) and spent a night in prison and seen off some local schoolchildren who were up to no good in the hospital.

She still tries to move without her frame and has to be reminded each time.

Our hope is that once back in familiar surroundings (if she does even remember them), then her mental state improves. It is just a hope. however.

I'm heading up to Crawley Hospital now to see what today brings...

Catch up soon, but had to chuckle at the story of her trip to Italy etc. Reminded me that in my dads last few weeks he told me that someone would be round my house later to get me to sign the official secrets act, as he had been working as a special agent all his life and I now had to take this over. They never came, or did they...