[Help] Help with possible dementia

[Harry Wilson's tackle]

Any Power of Attorneys in place for either financial/health?

I’d say first port of call is the GP for an official diagnosis…second, contact these people….I got lots of help when my mother was suffering

https://www.alzheimers.org.uk/

Wish you all the best ..it’s not easy, but it’s your parents so you will naturally do all you can..look after yourself too

This

 

[Harry Wilson's tackle]

Anyone have any experience of psychotic episodes with dementia and potential medication used to treat? My dad (82) has night psychosis/hallucinations/verbally violent episodes but has also suffered with sleep aponea so being sedated overnight is risky. He's currently on Memantine only. We're stuck in a nightmare situation of my mum having had a mild heart attack five days ago following one of his aggressive /threatening night time episodes and her now being back home with him, but him generally being far too lucid for a nursing home. I'm currently off work and sleeping in their house to safeguard her and will contact the crisis team and GP surgery tomorrow. All feels a bit desperate, haven't slept in days. He was an abusive and violent person in his younger years and I'm guessing the dementia episodes are an exaggeration of that underlying personality trait that hasn't surfaced in decades.

That's tough. If he's a threat to your mum (sounds like he is) then I'm not sure what formal recourse you have other than 'sectioning'. Her safety is paramount. I am not an expert in this area. Knowing how shitehouse the NHS is now, especially WRT mental health, if you can contain the situation yourself this may be best. Do you have a good support network? I'm trying to think....GP, 2 weeks for a phone consultation....rock up at A&E wait all day and be sent home. Christ, sorry, this angers me. Lots of phoning is best for now I suspect

 

[Cheshire Cat]

Mrs Cat has early onset vascular dementia and is on a mix of lamotrigine, quetiapine, sertraline and and mirtazapine for various interlinked issues.

She is still very ill even taking all that, but before she went on them, she was extremely difficult - sundowning, roaming at night, anxiety, panic attacks, shadowing, psychotic, hallucinations, aggression, and various very weird delusions. All that is still there, but the meds do seem to have taken the edge off the worst and quitened her down a bit.

NHS completely useless, except for a couple of local GPs. Local memory clinic might as well not exist for all the help it didn't provide. Adult Social Care even worse - no use at all.

If you have any savings or capital you are on your own. There is NO useful support out there. All the website say the same platitudes and their "advice" is useless.

 

[METALMICKY]

Sadly sectioning may be the only safe way forward. Check out the the link below to the Beechwood Unit at Uckfield where my mother in law had to go for 6 months. They should be able to advise how to get a referral to them.

Beechwood Unit

www.sussexpartnership.nhs.uk

 

[Eric the meek]

Mrs Cat has early onset vascular dementia and is on a mix of lamotrigine, quetiapine, sertraline and and mirtazapine for various interlinked issues.

She is still very ill even taking all that, but before she went on them, she was extremely difficult - sundowning, roaming at night, anxiety, panic attacks, shadowing, psychotic, hallucinations, aggression, and various very weird delusions. All that is still there, but the meds do seem to have taken the edge off the worst and quitened her down a bit.

NHS completely useless, except for a couple of local GPs. Local memory clinic might as well not exist for all the help it didn't provide. Adult Social Care even worse - no use at all.

If you have any savings or capital you are on your own. There is NO useful support out there. All the website say the same platitudes and their "advice" is useless.

I do, so very much wish I could help, but the truth is, I can't. Neither can the NHS to be honest. It's a brutal disease, which I found out a few years ago. One day, I went in to see Mum at her dementia home, and she was in a katatonic state. They had given her a chemical cosh. They promised it would never happen again.

My only words of comfort are that you will get through it. It absolutely will pass. Towards the end, my Mum changed from a vile, aggressive old woman to a lovely gentlewoman, easily the most popular resident in the home. I actually managed to develop some kind of relationship with her, that I had never achieved beforehand.

I hope you and the other contributors will soon find some peace. You will come out the other side. The very best of luck to you all.

 

[portlock seagull]

Everyone on this board will be affected by dementia, directly or indirectly. You need to make your own peace with this disease depending on circumstances. My family and I have had a horrific time, above and beyond by very seasoned accounts. It makes no difference mind, my only advice is look after yourself too because it’s just as much about you as it is them. Pray for an earlier release eg that it’s vascular rather than Alzheimer’s, that they die sooner rather than later. For everyone’s sake, foremost theirs.

 

[Dodsbury]

Anyone have any experience of psychotic episodes with dementia and potential medication used to treat? My dad (82) has night psychosis/hallucinations/verbally violent episodes but has also suffered with sleep aponea so being sedated overnight is risky. He's currently on Memantine only. We're stuck in a nightmare situation of my mum having had a mild heart attack five days ago following one of his aggressive /threatening night time episodes and her now being back home with him, but him generally being far too lucid for a nursing home. I'm currently off work and sleeping in their house to safeguard her and will contact the crisis team and GP surgery tomorrow. All feels a bit desperate, haven't slept in days. He was an abusive and violent person in his younger years and I'm guessing the dementia episodes are an exaggeration of that underlying personality trait that hasn't surfaced in decades.

Hi, sounds very difficult and does seem to need GP and then community older people psychiatric help. Establishing a regular sleep pattern is really important so make sure he's on decaffeinated tea/coffee. If you/he can, take him out for a walk each day and a hot bath before bed can help too. Medication to help sleep can be tricky but ask GP if they would give him a trial of Trazodone 50 to 100mg at night, lots of specialists recommend it in people with dementia. It's a type of anti-depressant but not a particular good one. It's closest relative is mirrazapine but is much better for sleep. The anti-depressant dose starts at 150mg so the dose tried for sleep is much lower and you tend to find that people generally don't have a 'hangover' effect and so are alert next day. Try to get them to avoid traditional sleeping tablets, that don't usually work that well in people with dementia.

If he requires an anti-psychotic then he'll definitely need to see a specialist and the time will depend on where you live but there are nhs services that can see within a week if urgent. With antipsychotics it's 'horses for courses' but low dose risperidone has a licence in dementia and aripiprazole has the best side effects profile.


Good luck with it all. And let us all know how you get on.

 

[South Oz Seagull]

Sorry to hear about your Mum's (and your) plight. Dementia is hell for the sufferer and their family. My wife's parents passed away from it and my grandma who was living with us, and one of my uncles went down with it. We can all live in hope that a miracle drug comes along sooner rather than later to really help dementia sufferers and it might. In the meantime, it would seem from all the posts here there is a lot of support if you can navigate your way through the bureaucracy.

The quality of responses from North Stand members here is commendable.

 

[BrightonCottager]

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.

 

[Tight shorts]

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.

 

[Deadly Danson]

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.

Both my parents are in Fairdene Lodge care home. I couldn't recommend them more highly. Plenty of staff, very homely feel, loads of activities provided, visiting actively encouraged and a light, airy ambience. It was the hardest day in my life leaving both parents (they both have dementia) there after their needs got too advanced for us and a home carer but we are very comfortable that they are in as good hands as possible even though the whole situation remains unbelievably difficult. Not cheap mind.

 

[METALMICKY]

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.

To be honest you're not going to get away from visiting a fair few and that's no fun. With dementia care you will need to also establish whether your mum just needs residential dementia care or whether in the near future nursing dementia care too. Many homes only provide residential care and you would need to move your mum on to another home if she had nursing needs.

With your mum's dementia you would need to be 100% honest with any home if she has any behavioral issues. Unfortunately, my mother in law has Lewy Bodies dementia which often includes loud aggressive outbursts and sometimes throwing stuff. Ultimately, what we found is that a lot of homes really like to cherry pick nice little forgetful ladies.

 

[METALMICKY]

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.

Excellent advice.

 

[ozzygull]

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.

My Mum had a fall the christmas before last and was diagnossed with vascular dementia she was not safe to go home after as she lived on her own. They found a place a Middleton Grove in Portland Road Hove. My mum was 90 at the time and her illness was quite rapid during the next 11 months, before she passed in November last year.

When I visited I her, I knew she was in a good place and being well looked after. The nurses and care staff were really good. It is an old building but it was always clean.

 

[Deadly Danson]

My Mum had a fall the christmas before last and was diagnossed with vascular dementia she was not safe to go home after as she lived on her own. They found a place a Middleton Grove in Portland Road Hove. My mum was 90 at the time and her illness was quite rapid during the next 11 months, before she passed in November last year.

When I visited I her, I knew she was in a good place and being well looked after. The nurses and care staff were really good. It is an old building but it was always clean.

Now that is interesting. We visited Middleton Grove and found it to be the most awful place imaginable, dark and dingy, alarms going off all over the place (not answered) and inhospitable. Both myself and my sister came out saying we would send our parents there over our dead bodies. I'm not doubting you at all so perhaps we visited on a bad day but was your Mum happy there? Did they lay on plenty of activites, events for the residents? The manager seemed more like a salesperson and we both took an instant dislike to him.

 

[ozzygull]

Now that is interesting. We visited Middleton Grove and found it to be the most awful place imaginable, dark and dingy, alarms going off all over the place (not answered) and inhospitable. Both myself and my sister came out saying we would send our parents there over our dead bodies. I'm not doubting you at all so perhaps we visited on a bad day but was your Mum happy there? Did they lay on plenty of activites, events for the residents? The manager seemed more like a salesperson and we both took an instant dislike to him.

Yes, they did put on a lot of activities and we went out with them a few times on trips they organised. I had to fill out multiple forms about her life and who she was, what she liked and disliked etc.

It's difficult to say what my mum was feeling because of the dementia. One time I visited she thought she was in a pub and said while looking around at the other residents "these arn't very lively, do you want to go somewhere else"

But her room was always clean, she was always clean and nicely dressed, Some times I would turn up with no notice, so it was not like they could just do this for my visits.

I agree that it is an old fashoined building and some bits look a bit tired, but I was more concerned about the care she recived.

She seemed to like the staff and when she passed away I was there with her, the staff that came in were visably upset

 

[Deadly Danson]

Yes, they did put on a lot of activities and we went out with them a few times on trips they organised. I had to fill out multiple forms about her life and who she was, what she liked and disliked etc.

It's difficult to say what my mum was feeling because of the dementia. One time I visited she thought she was in a pub and said while looking around at the other residents "these arn't very lively, do you want to go somewhere else"

But her room was always clean, she was always clean and nicely dressed, Some times I would turn up with no notice, so it was not like they could just do this for my visits.

I agree that it is an old fashoined building and some bits look a bit tired, but I was more concerned about the care she recived.

She seemed to like the staff and when she passed away I was there with her, the staff that came in were visably upset

That's really good to hear that all went as well as these things can there and sorry for your loss.

 

[ozzygull]

That's really good to hear that all went as well as these things can there and sorry for your loss.

Thank you. It's getting a bit easier, but I still get moments when I feel like I have been stabbed in the chest and the sense of sadness is over whelming.

 

[BrightonCottager]

Thank you for your advice. I've heard good things about the staff at Sycamore Lodge up Bear Road as well. Any more recommendations are gratefully received.

 

[Deadly Danson]

Thank you. It's getting a bit easier, but I still get moments when I feel like I have been stabbed in the chest and the sense of sadness is over whelming.

I absolutely hear you - sometimes it's almost unbearable to watch both parents deteriorate to the point where one has almost no cognitive function at all and the other doesn't know where he is or what he's doing and barely who I am. Even though we 100% made the correct decision at the right time to move them into the home, it doesn't stop the guilt and we still have your sense of final loss to come too. It's a tough old business but you can at least be content that your Mum was in a good place for her last months. All the best.