[Help] Help with possible dementia

[Half Time Pies]

After spending most of 2 days with my mum in hospital with her getting diagnosed with thrombosis, she has now accepted the need for some day care to get ointment rubbed into her leg and check she's taken her meds. After resisting hugely for years, she now enjoys the interaction with the carer. However, I'm thinking of the next stages and so can anyone please recommend dementia care homes in Brighton and Hove? Autumn Lodge has been recommended by @Eric the meek , but according to the CQC website there are 30, all but 3 or 4 graded as 'good'. Can anyone recommend websites containing reviews (there seem to be multiple ones of these as well) or other ways of prioritising other than visiting them all and creating a huge spreadsheet!? Thank you.

Carehome.co.uk is Ok as a review site, I would look at number of reviews as well as review score as some organisations only encourage those clients that they know are 100% happy with the service to submit a review rather than all their clients.

https://www.carehome.co.uk/care_search_results.cfm/searchtown/Brighton

As others have said though looks can be deceiving with Care Homes, I have been in some that looked amazing, were beautifully decorated and had a well refined and convincing sales process but weren't great when you scratched the surface. Often in the homes that are part of a group you will be shown around by a sales person and get nowhere near the care team. You need to speak with the Care Manager, speak with members of staff, see the other residents, maybe talk to their families and also really ask yourself if its an environment in which your Mum would be comfortable, is it their type of place. We have had clients that absolutely loved a care home but then another client has gone in to the same care home and absolutely hated it.

The fact that family members are happy with a care home also doesn't always mean that the person living with Dementia is, sometimes people living with Dementia are not always able to communicate when they are not happy, and sometimes even when they do its not believed, so don't take things at face value and never be afraid to ask difficult questions.

 

[Marlton and Hove Albion]

I have to say I did the big spreadsheet and visited lots of them. Had headings for CQC ratings as a starting point and eliminated anything below a good rating. I looked at facilities that I thought important, such as a decent garden that residents can actually use and lots of activities going on. I made comments on my spreadsheet so I didn't get muddled up. In hindsight, I think the most important thing is the staff. Much more important than an impressive building or the size of the bedroom. Seeing happy staff and smiling faces from residents who are not all just stuck in their rooms is the best sign of a good home in my opinion. I think the layout of the social areas is also important so that residents aren't stranded away from the main hubs of activity. It took me a lot of research, phone calls and visits before finding the right one and then the home having a place become available. My area was Worthing and not Brighton so I have nothing useful about places in Brighton area. Some homes have Facebook pages where they share pictures of social activities, which may be worth checking out.

My family are facing this reality. Would you be willing to share your spreadsheet with me? Any advise gratefully accepted. Nightmare.

 

[BrightonCottager]

My family are facing this reality. Would you be willing to share your spreadsheet with me? Any advise gratefully accepted. Nightmare.

Sorry to hear this @Marlton and Hove Albion . I'm on the same journey. I looked at 3: Maycroft Manor, c/o London Road and Carden Avenue, the Masonic one near the King Alfred and Barford Court, Dyke Road Avenue. My preferences are in that order. I also looked at carehome.co.uk. My mum is still refusing to go in a care home, despite not being able to remember what happened 10 minutes ago.

This morning I dropped into the Brighton Carers Hub coffee morning at Al Campo on London Road. Very supportive and welcoming. https://carershub.co.uk/

DM me if you want more info.

 

[chaileyjem]

Thanks for @Half Time Pies @BrightonCottager, @Tight shorts and others on this thread. My 87 year old Dad has recently , quite suddenly been on this journey. He's now in a new home in Hove , having been given a bed in a home (by the NHS) after being admitted to hospital late last year. Its been a tough , sudden, heartbreaking few months - he came with me to the Albion late last year and (i thought) he seemed fine. I appreciate hearing about others have coped, the choices you have to make and how you're getting through it.


( PS: I wrote about my Dad - in this months When Saturday Comes magazine if you're a subscriber or buy it. I'll share it on here when its off sale. )

 

[Cheeky Monkey]

^ my dad (83) has been in hospital for 3 weeks following a broken hip, a classic dementia-related injury and is less lucid than when he went in so not sure if he will come home now.

As I’ve mentioned before, I hope to possibly have something in place for myself, Swiss clinic style, so that should I go down the same road one day my daughter doesn’t go through with me what our family have been through, not to mention the indignity, confusion and fear experienced by the sufferer. It’s also a terrible drain on the NHS. In my opinion we overly protect life in the UK, and understandably so, but the individual should, while lucid, at least have the right to choose.

 

[BrightonCottager]

Since I last posted, my life has become dominated by my mum's dementia and its impact on me and my family. She fell over in her home and this triggered a whole load of NHS appointments and some adaptations to her house. I added more carer visits and installed some security cameras (EZVIZ from Currys £21.11 each plus £2.99/month/camera for cloud storage). Mum fell over another couple of times, involving trips to Hillingdon Hospital A&E and overnight stays in the Frail unit and was discharged with a recommendation for 24 hour care. I had to arrange this at short notice and the care agency flew someone in from Romania. I'm moving mum into a care home in Brighton on Friday.

The mental toll this has taken on me is considerable. I wasnt sleeping and after one of my visits I basically had a meltdown and I walked into my GPs to get an appointment and he signed me off work for 2 weeks. Using antihistamines has helped me sleep but the biggest help has been my family and friends. Its affected my family a lot and I've stopped doing a lot of things to spend more time with them (even missing Fulham's great victory yesterday!).

I'm hoping that I'll be able to get my mum down here - I'll be describing it as a 'break' - and into the home without too much extra angst. Once she's there, I think she will benefit hugely from the additional support and social interaction. And I'll be able to visit more regularly. Then I'll have to sell her house.

As @Cheeky Monkey says, this is a terrible way of treating people, especially when they have clearly articulated (before dementia) that they would rather not be here.

 

[Chicken Run]

Since I last posted, my life has become dominated by my mum's dementia and its impact on me and my family. She fell over in her home and this triggered a whole load of NHS appointments and some adaptations to her house. I added more carer visits and installed some security cameras (EZVIZ from Currys £21.11 each plus £2.99/month/camera for cloud storage). Mum fell over another couple of times, involving trips to Hillingdon Hospital A&E and overnight stays in the Frail unit and was discharged with a recommendation for 24 hour care. I had to arrange this at short notice and the care agency flew someone in from Romania. I'm moving mum into a care home in Brighton on Friday.

The mental toll this has taken on me is considerable. I wasnt sleeping and after one of my visits I basically had a meltdown and I walked into my GPs to get an appointment and he signed me off work for 2 weeks. Using antihistamines has helped me sleep but the biggest help has been my family and friends. Its affected my family a lot and I've stopped doing a lot of things to spend more time with them (even missing Fulham's great victory yesterday!).

I'm hoping that I'll be able to get my mum down here - I'll be describing it as a 'break' - and into the home without too much extra angst. Once she's there, I think she will benefit hugely from the additional support and social interaction. And I'll be able to visit more regularly. Then I'll have to sell her house.

As @Cheeky Monkey says, this is a terrible way of treating people, especially when they have clearly articulated (before dementia) that they would rather not be here.

I’m really sorry to hear this mate, my mother is 91, fell in the snow the day after that 4-2 game at the cottage 2019. Broke her femer and has never walked since , she has all her factualitys but is physically broken, she can’t get upstairs to her shower so bird baths in the kitchen but refuses to have adaption work done , on The one occasion I got her to the first floor she couldn’t get out of the shower so I had to assist an seeing your mum naked is terrible for her and me. I’ll never get her in a home and she won’t have care , thankfully I’m able to see her daily but it’s really depressing and frustrating that she thinks she can muddle on ,I’m exhausted with it and also wish my brother would help more. good luck mate

 

[BrightonCottager]

I’m really sorry to hear this mate, my mother is 91, fell in the snow the day after that 4-2 game at the cottage 2019. Broke her femer and has never walked since , she has all her factualitys but is physically broken, she can’t get upstairs to her shower so bird baths in the kitchen but refuses to have adaption work done , on The one occasion I got her to the first floor she couldn’t get out of the shower so I had to assist an seeing your mum naked is terrible for her and me. I’ll never get her in a home and she won’t have care , thankfully I’m able to see her daily but it’s really depressing and frustrating that she thinks she can muddle on ,I’m exhausted with it and also wish my brother would help more. good luck mate

That sounds horrible, so sorry. My mum wouldn't have care either, until a hospital doctor said it was necessary for something other than dementia (thrombosis). This gave me the excuse to get it in and then I could ask the carers to start doing things mum couldn't do any longer because of dementia. If you are exhausted with it and can't cope, then could you get a social services assessment? If your mum has all her mental faculties then she might understand your plight. That can trigger carers. Also, while she has her faculties, try and get a Power of Attorney in place.

 

[Chicken Run]

That sounds horrible, so sorry. My mum wouldn't have care either, until a hospital doctor said it was necessary for something other than dementia (thrombosis). This gave me the excuse to get it in and then I could ask the carers to start doing things mum couldn't do any longer because of dementia. If you are exhausted with it and can't cope, then could you get a social services assessment? If your mum has all her mental faculties then she might understand your plight. That can trigger carers. Also, while she has her faculties, try and get a Power of Attorney in place.

Good advice thank you

 

[dazzer6666]

That sounds horrible, so sorry. My mum wouldn't have care either, until a hospital doctor said it was necessary for something other than dementia (thrombosis). This gave me the excuse to get it in and then I could ask the carers to start doing things mum couldn't do any longer because of dementia. If you are exhausted with it and can't cope, then could you get a social services assessment? If your mum has all her mental faculties then she might understand your plight. That can trigger carers. Also, while she has her faculties, try and get a Power of Attorney in place.

Good point re the PoAs….they are so important. Daughter works in palliative and stroke units, and the issues they have when PoAs aren’t in place can be incredibly difficult to deal with. We’re still in our 50s but already have them done.

 

[um bongo molongo]

Good point re the PoAs….they are so important. Daughter works in palliative and stroke units, and the issues they have when PoAs aren’t in place can be incredibly difficult to deal with. We’re still in our 50s but already have them done.

I got these done based on advice on here and it’s already proved invaluable. I’d add that although there’s lots offering services when you Google, there’s no need for a solicitor or anything like that. You can complete the forms together and then go to their GP who will usually ask a few questions to check they understand what they have signed before countersigning.

My only issue with the process was that it took months (around 3) to receive them back after submission, and the cost added up a bit (£82 per form x 2 forms x 2 parents for me). But generally it works well and for the bigger organisations once it’s fully registered there’s a way to share a code with them that means they can register it and then they will talk directly to you each time.

 

[Marlton and Hove Albion]

Since I last posted, my life has become dominated by my mum's dementia and its impact on me and my family. She fell over in her home and this triggered a whole load of NHS appointments and some adaptations to her house. I added more carer visits and installed some security cameras (EZVIZ from Currys £21.11 each plus £2.99/month/camera for cloud storage). Mum fell over another couple of times, involving trips to Hillingdon Hospital A&E and overnight stays in the Frail unit and was discharged with a recommendation for 24 hour care. I had to arrange this at short notice and the care agency flew someone in from Romania. I'm moving mum into a care home in Brighton on Friday.

The mental toll this has taken on me is considerable. I wasnt sleeping and after one of my visits I basically had a meltdown and I walked into my GPs to get an appointment and he signed me off work for 2 weeks. Using antihistamines has helped me sleep but the biggest help has been my family and friends. Its affected my family a lot and I've stopped doing a lot of things to spend more time with them (even missing Fulham's great victory yesterday!).

I'm hoping that I'll be able to get my mum down here - I'll be describing it as a 'break' - and into the home without too much extra angst. Once she's there, I think she will benefit hugely from the additional support and social interaction. And I'll be able to visit more regularly. Then I'll have to sell her house.

As @Cheeky Monkey says, this is a terrible way of treating people, especially when they have clearly articulated (before dementia) that they would rather not be here.

So sorry to hear this news. You were kind to me when I posted looking for help a few weeks ago. I am sure there are MANY of us on this board who are grateful to be able to share and help one another. While it is our parents now, it will be all of us sooner than we all think.

I spent a month in the UK with my parents. My father (broken hip) was discharged from Lewes Rehab (can't speak highly enough about that team), and has transitioned home. The memory clinic are coming to their home on 6th April to throughly diagnose his dementia. I must say, he is better at home vs. in Lewes. He clearly has ongoing problems, BUT seems more lucid and less paranoid.

While in the UK, I had railings installed outside to facilitate safer exit from their home, a step built (the last one was 10 inch drop), a walk in shower to replace the bath tub, many trips to Newhaven recycling to clear years of accumulated crap, added grab bars in toilet and bathroom (cheap and easy via Amazon), installed a tumbledryer (no need to hang washing now and lots of bits and pieces to make their difficult lives it little less.

I am struggling to explain to my father that his accumulated savings will disappear when caring becomes a part and full time thing. We do have a POA in motion. NHS doctors have for the most part, been useless. I did arrange for prescriptions to be called in and delivered vs. the long, unnecessary and dangeorus bus journey (Mum broke 2 ribs last time).

I would be VERY interested in the organization that can arrange live in support (you mentioned Romania) as that will become a need when my parents realize it's all too much. PM me if you can.

 

[BrightonCottager]

So sorry to hear this news. You were kind to me when I posted looking for help a few weeks ago. I am sure there are MANY of us on this board who are grateful to be able to share and help one another. While it is our parents now, it will be all of us sooner than we all think.

I spent a month in the UK with my parents. My father (broken hip) was discharged from Lewes Rehab (can't speak highly enough about that team), and has transitioned home. The memory clinic are coming to their home on 6th April to throughly diagnose his dementia. I must say, he is better at home vs. in Lewes. He clearly has ongoing problems, BUT seems more lucid and less paranoid.

While in the UK, I had railings installed outside to facilitate safer exit from their home, a step built (the last one was 10 inch drop), a walk in shower to replace the bath tub, many trips to Newhaven recycling to clear years of accumulated crap, added grab bars in toilet and bathroom (cheap and easy via Amazon), installed a tumbledryer (no need to hang washing now and lots of bits and pieces to make their difficult lives it little less.

I am struggling to explain to my father that his accumulated savings will disappear when caring becomes a part and full time thing. We do have a POA in motion. NHS doctors have for the most part, been useless. I did arrange for prescriptions to be called in and delivered vs. the long, unnecessary and dangeorus bus journey (Mum broke 2 ribs last time).

I would be VERY interested in the organization that can arrange live in support (you mentioned Romania) as that will become a need when my parents realize it's all too much. PM me if you can.

@Marlton and Hove Albion That is all very positive, you've achieved a lot in a short space of time. An official diagnosis may lead to offers of drugs to slow down the disease. I rejected these because the main side effects were drowsiness leading to instability and bowel problems. I didn't want my mum getting either of those because of her medical history and having lots of stairs. We opted for Sertraline which reduces anxiety. However it also lowers blood pressure which can lead to postural drop (dizziness when standing up) and could have been a factor in her recent falls. Her dosage is being reduced.

Official diagnosis should also lead to you or other carers getting help and advice from the Council's and support services - often charities like Age UK and the Alzheimers Society. The AZ runs a fantastic website and message board (I'm spending more time on it than NSC and Friends of Fulham at the moment). You can guarantee that your question has been asked before and if not then there is lots of help.

I chose a care agency on a personal recommendation of one of my mum's 97yo friends. Her main carer has been great. The Romanian was flown over at short notice. It costs £1500 / week which is a lot cheaper than an hourly rate but the alternative is not realistic (me living there). I recommend you research local agencies.

Finally, talk to people about your feelings. It's uncharacteristic of me to do this but many people have been through this already and its helped me a lot. Contact your local carers network. Just talking to people helps.

 

[chaileyjem]

I've been going through a tough journey with my Dad who quite quickly has succumbed to this horrible illness. We did go to a match earlier this season but i realised then something had changed. I've tried to capture how I feel, and how our shared love of the Albion has helped us in rare moments, often sitting in beds in care homes - in this longish piece for When Saturday Comes. Hope it gives a sense of what its like, and how football makes a difference. (PS: its been really useful reading this thread over the last few months as we went through the journey of accepting his illness, finding him a care home and ultimately having to put his house up for sale) .

How football cut through the fog of Dad's dementia

The memories from a shared lifelong love of Brighton & Hove Albion still provide a spark

www.wsc.co.uk

 

[chaileyjem]

This is also worth a listen. A heartbreaking but positive story of how Andrew , a Doncaster Rovers , has gone through a similar journey with his Dad.

 

[BrightonCottager]

I've been going through a tough journey with my Dad who quite quickly has succumbed to this horrible illness. We did go to a match earlier this season but i realised then something had changed. I've tried to capture how I feel, and how our shared love of the Albion has helped us in rare moments, often sitting in beds in care homes - in this longish piece for When Saturday Comes. Hope it gives a sense of what its like, and how football makes a difference. (PS: its been really useful reading this thread over the last few months as we went through the journey of accepting his illness, finding him a care home and ultimately having to put his house up for sale) .

How football cut through the fog of Dad's dementia

The memories from a shared lifelong love of Brighton & Hove Albion still provide a spark

www.wsc.co.uk

Thank you @chaileyjem for that post and especially the WSC article. I've now managed to get my mum.into a care home in Brighton and the Deprivation of Liberty forms & assessment were a bit of a surprise to me and really brought things into perspective about what dementia does. She seems slowly to be coming to terms with her new surroundings. After living alone for 24 years she's now with about 20 residents and a similar number of staff. Being able to visit her almost daily without an emergency is nice for both of us but it's almost not been helping her to settle with her new 'neighbours'.

On the subject of the significance of football, there's a gentleman on my mum's corridor who rarely gets out of bed but was in the cafe with a relative a couple of Sundays ago being shown the highlights of the previous day's Fulham game. When I passed him later, I said Up The Fulham and a flicker of a smile crossed his face.

Good luck with your dad.

 

[Cheeky Monkey]

Anyone know if you're required to cash out investments like ISAs held by the dementia patient before they reach their end date to pay care home fees, or do they delay that until the fixed term ends?

Thanks in advance.

 

[Bozza]

It's no great surprise, but my mum has just been given a preliminary diagnosis of a mix of Alzheimer's and vascular dementia.

It's been a whirlwind six months or so.

Back then she was still fully independent, or very close to it: driving, still doing a bit of work (a mobile hairdresser by trade), doing the shopping and cooking etc.

She had been diagnosed with Mild Cognitive Impairment (MCI) but it only really demonstrated with short-term memory issues, such as asking the same question two or three times in short succession.

A fall and subsequent broken hip massively accelerated the decline, and she's not been the same since then.

It's tough. She's massively paranoid that people, particularly her sister/my aunt who lives with her, are trying to steal her things. Because of this she hides things in weird and wonderful places. She then forgets this, accuses people of stealing her stuff until I search the house to find it. And round, and round we go.

She often thinks I'm in cahoots with my aunt, which makes it very difficult to persuade her that we're all just trying to help and care for her. This often leads to me being told to "f*** off and never come back." I do, of course. In fact it's where I am right now typing this.

A search for Memantine brought me to this thread, as she has just been prescribed it, and will start tomorrow.

Thoughts are with all those going through similar times.

 

[Zeberdi]

So sorry to hear that @Bozza.

Dementia is really tough on the family who are trying to provide support.

From professional experience (of working in EMI homes) and from personal experience years ago with a family member, I found it worked often not engaging too much with the particular issue that is causing the agitation and confusion or fighting against it (which can cause quite a violent reaction) but to use distraction techniques and going along with the narrative so far but at the same time diverting the attention away from the immediate issue onto something else.

For example, when I was dealing with someone that for whatever reason was kicking up and needing to leave the building - rather than argue and get into stressful conflict with someone who was not being rational, I use to agree with taking them out but then suggest they change first or get their coat on etc or have a cup of tea first - 9 times out of 10, by the time they got to the end of the corridor, or had a cuppa they had entirely forgotten they wanted to go outside .

I know it’s a completely different situation but just in case that rings any bells.

Good luck with it.

 

[Cheeky Monkey]

Vascular dementia is largely preventable (apparently) by keeping a healthy blood pressure through middle age (40-60) keeping a lid on excess alcohol and not eating too much crap. It's no use them prescribing blood pressure meds once you have VD as the damage is long done, and the less said about Memantine the better in my dad's experience anyway, absolutely useless, he may as well have been consuming Smarties such was his unstoppable mental decline with VD.