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

[Ernest]

My Mum was diagnosed with dementia a year or so back, one of the reasons we had to stop going to the Albion but she couldn't keep her own home. She moved into Brooke Mead in November which is a specialised home for dementia/Alzheimers sufferers and they all get their own flat so have their own privacy but the carers are all on site and they come in twice a day and as/when necessary like when she had a fall recently.
She was a bit confused at first but has settled in well and loves it now. Worth looking for something similar as she won't have to give up her independence etc but is still looked after

 

[Thunder Bolt]

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...

The Red Cross and Age Concern have some equipment which can be loaned, rather than you having to buy it outright.

 

[Thunder Bolt]

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...

My MIL was telling everyone in the ward, my SIL worked for M&S mending broken biscuits!
She is a teaching assistant for special needs children & a qualified nursery nurse.

 

[Flounce]

My MIL was telling everyone in the ward, my SIL worked for M&S mending broken biscuits!
She is a teaching assistant for special needs children & a qualified nursery nurse.

My father was in intensive care from an aortic aneurysm in New York and told me about the orgies that went on there at night when I visited him during the day. The fact that it was an intensive care ward made it hard to keep a smile off my face. A bit of humour in situations like that is gallows humour I guess and lightens things. He recovered and lived for another six years.

 

[Harry Wilson's tackle]

Christ only knows what sort of mischief I'll make when my frontal cortex finally succumbs to the battering i have given it over the decades. My missus is fit to swing for me three times a week as it is.

 

[Bodian]

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.

This bit is great. It's changed a lot since the days they just used to chuck people out of hospital when they were 'medically fit'. My father-in-law was recently kept in for about 4-5 extra nights after a fall until the Pathway 1 care team had been able to put 4x daily visits to his home in place. Quite impressive really, given the pressure on bedspace in hospitals.

 

[A mex eyecan]

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

Don’t ever feel remotely guilty about not being/feeling able to call in every day. It is exhausting and grinds you down.

Just over a year ago we moved M&D into assisted living at St George’s. Dad’s dementia and incontinence worsened in last few months and this was causing my M to go further downhill trying to deal with things like D constant repeating everything over and over and over. Explain to him one minute and he asks again the next.

M has cancer amongst other things and not long ago fell and broke her hip. Both are into 90’s. Eventually D ground M down so much that she has stayed in the apartment and he has had to be moved into the nursing care home next door.

It’s hard, really hard, sometimes facing up to it all. I feel guilty as I only call in twice a week. However I’m very lucky as they get many visitors, family members and people from the church they used to attend. That’s a big help, although the both moan that ‘we don’t see many people’. Looked in Ms calendar yesterday and it’s full, jammed full for the next few weeks

For the last 5 years I’ve also acted as PoA for a very elderly Aunt, late 90’s. She still lives independently and refuses point blank for us to get her any help at all. She’s started falling quite a bit, but won’t ever use her emergency call button! Over last 3-4 months she has started really going down hill mentally and physically. It’s not been clinically diagnosed but there’s no doubting she has dementia and at some pace. I travel up to see her roughly every 2 weeks, she has no children of her own. Many nieces and nephews who haven’t made contact with her in decades ( I expect they are waiting for the reading of her will - excuse the cynicism). I have tried speaking with her GP practice to see if I get enact the PoA so I can try and get some help behind the scenes. Despite me explaining the delicacy they proceeded to contact her and ask if it is okay to converse with me! She went off the scale angry with me. I made a complain to the practice and asked what they thought the points of dealing with PoA’s in advance was if they won’t accept that the Donor by completing the forms has already given their consent to a nominated person to act on their behalf when it’s deemed necessary.

Its a long, horrid road for everyone concerned dealing with these matters, not just the elderly person and you but also your family and partners/spouses etc.

Chin up everyone suffering.

 

[BrightonCottager]

@Bozza Make sure you look after yourself mate, you can't shoulder all.of this by yourself. It almost did me in. Also, make sure your mum has adaptations for the shower so she's safe in there - a shower chair and grab handles. Social services did these for my mum before she left home.

My family say I'm much happier now my mum's in a care home 10 minutes away. They're right. Importantly, she is as well - there's always people to chat to, even if it's nonsense. The downside is that her glasses and a box of photos we had copied have gone awol- people are in and out of each others rooms a lot. In the grand scheme of things this is nothing.

I'm now dealing with the various building societies etc she had accounts with and even having a POA in place isn't the silver bullet you might think. Each one has different rules about registering the PoA and proving your identity. If you have an old paper PoA, get copies certified by a solicitor. NS&I lost my original for 3 months.

 

[FamilyGuy]

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.

My mum had exactly the same reservations - which made me (and then her) laugh out loud.

 

[Bozza]

Today’s excitement is arriving at the hospital to find there’s Covid on the ward.

My mum has just been tested and returned a strong positive.

 

[dejavuatbtn]

Today’s excitement is arriving at the hospital to find there’s Covid on the ward.

My mum has just been tested and returned a strong positive.

My step dad is in a care home, not specialised dementia care, and fell early on Saturday morning - he’s still in RSCH A&E. I have recently had covid and trying to get info by phone is almost impossible.
I note that you had a lot of kit recommended for home that he doesn’t have at his care home. I think the time has come for specialist care. This thread has been useful for a few of us. Thank you all.
Hope all goes well for you and yours.

 

[The Clamp]

Just caught up with this thread.

I hope you are all coping okay, Bozza.

Dementia is a different experience for everyone but the universal experience of seeing a loved one succumb to it is life altering.

My Stepfather had dementia and died quite soon after diagnosis, within two years.

He became a very unpleasant person to be around.

Whereas a close friend of the family was thoroughly jovial until he died. But he went very quiet for the last two years. Just sitting and poring over his daily paper.

His wife said the house became a very lonely place.


Anyway, best wishes to you, Bozza.

 

[BrightonCottager]

Today’s excitement is arriving at the hospital to find there’s Covid on the ward.

My mum has just been tested and returned a strong positive.

There's covid in the Brighton care home my mum's in, although confined (as far as I'm aware) to the ground floor, not the floor she's on.
Hope your mum (& you) are OK, @Bozza .

 

[Bozza]

Once again, thanks for all the advice and support both on this thread, via PM and email. I know I've not responded to everyone, but I have read everything.

Yesterday I brought my mum home from Crawley Hospital after three long months.

My mum's mental state is still very poor - she doesn't remember her house as being her home and seems to think I live with her etc. From being happy when I was driving her back to Worthing, she was quite upset and tearful when at home. saying she wished she was dead. Hopefully just symptomatic of a big change after three months of hospital care.

We have a care package of four visits per day which will be a great help, although my mum didn't like her first evening visit yesterday, not taking to the carer and believing she was here to take her away somewhere and harm her.

It was the same carer this morning who got mum up, washed and dressed etc, and my mum thought she was utterly lovely. Hopefully, she'll become familiar with the carers as the days and weeks progress and she will be happier all the time when they come.

Anyway, I'm sitting alongside her now on her sofa, which is fantastic, and I won't miss having to drive to Crawley Hospital today!

 

[A mex eyecan]

Once again, thanks for all the advice and support both on this thread, via PM and email. I know I've not responded to everyone, but I have read everything.

Yesterday I brought my mum home from Crawley Hospital after three long months.

My mum's mental state is still very poor - she doesn't remember her house as being her home and seems to think I live with her etc. From being happy when I was driving her back to Worthing, she was quite upset and tearful when at home. saying she wished she was dead. Hopefully just symptomatic of a big change after three months of hospital care.

We have a care package of four visits per day which will be a great help, although my mum didn't like her first evening visit yesterday, not taking to the carer and believing she was here to take her away somewhere and harm her.

It was the same carer this morning who got mum up, washed and dressed etc, and my mum thought she was utterly lovely. Hopefully, she'll become familiar with the carers as the days and weeks progress and she will be happier all the time when they come.

Anyway, I'm sitting alongside her now on her sofa, which is fantastic, and I won't miss having to drive to Crawley Hospital today!

Glad she’s home Bozza.
It makes things just a little bit easier. Thoughts with you.

 

[Deadly Danson]

Once again, thanks for all the advice and support both on this thread, via PM and email. I know I've not responded to everyone, but I have read everything.

Yesterday I brought my mum home from Crawley Hospital after three long months.

My mum's mental state is still very poor - she doesn't remember her house as being her home and seems to think I live with her etc. From being happy when I was driving her back to Worthing, she was quite upset and tearful when at home. saying she wished she was dead. Hopefully just symptomatic of a big change after three months of hospital care.

We have a care package of four visits per day which will be a great help, although my mum didn't like her first evening visit yesterday, not taking to the carer and believing she was here to take her away somewhere and harm her.

It was the same carer this morning who got mum up, washed and dressed etc, and my mum thought she was utterly lovely. Hopefully, she'll become familiar with the carers as the days and weeks progress and she will be happier all the time when they come.

Anyway, I'm sitting alongside her now on her sofa, which is fantastic, and I won't miss having to drive to Crawley Hospital today!

Great to hear your Mum is home. It makes me shudder inside to hear your story and re-live some of the things that we've been through and are still enduring. Bit by bit hopefully the familiarity with the carers will settle the situation down and give you some much needed respite. I'd be giving some thought even at this stage to your desired care home for the future so that if and when the time comes it's all a bit easier if you've got a couple of places in mind. Good luck and all the best.

 

[chaileyjem]

Good to hear @Bozza - my Dad found the move to a care home (and then another care home) extremely disruptive at the time. And he also had similar dark thoughts at first, being scared and frightened of the carers and not being very grounded. He was on anti depressants for a while.
He's now far more settled and calmer and the familiarity/routine of the home that he's in has given him, we think , a bit more security and reassurance.

Hope it settles after time. And thanks again for sharing your story. Its been really helpful for me (and others who have joined in ) to hear you/their experiences of being a carer and coping with loved ones suffering from dementia or the tough choices you have to make with ageing parents to ensure they're safe. All the best. You must be exhausted.