Former dementia specialist nurse. Ask me anything.

[ElmtreeMama]

Opinions are my own obviously but happy to try and help.

Neolara I'm witnessing the same at my DF care home. Outstanding, glitzy home one of the best etc...however carers sat scrolling phones, not interacting. Although the "care" looks to be done. Would love some advice on what to say or do about this.

Unfortunately this is probably quite common. I have found that even though the carers are nice, there is little to no stimulation or interaction, unless the radio or tv is on - and even then most residents aren't really watching.
When we go in to visit my dad he really perks up having one to one attention, which I understand they don't have time to give everyone, but it's so sad because it makes such a difference to their day, and some people seem to get no visitors.

I also have issues with the fact that they don't seem to be feeding my dad very well. He was refusing to eat a few weeks ago, but he will eat again in small amounts, but they just seem to leave the food in front of him, and take it away again if he doesn't bother with it. He is losing weight, there is no dietician available and the staff don't seem to notice. We keep having to kick up a stink to get him fed properly, it's exhausting.

@Icecreamlover63 I'm sorry its really hard to say as it could be another stroke that ends her life at any moment or it could be slower. X

@letscallaspade I'd literally word it to the manager saying
I'm really surprised to see staff on their phones so much at work, it seems really unprofessional to me?

It would be hard for them to respond with anything other than, yes its unprofessional!

@movingnorthsoon it's a really tricky balance between what someone would have wanted before they had dementia and what they want now.
As an extreme example I looked after someone who had been against pharmaceuticals and medication of any kind her whole life, she wouldn't even take Paracetamol. But she had diazepam prescribed when she had advanced dementia that really helped her distress.
It divides people about what is the best course of action.

I always say never give me hot drinks even if i say I like them because I've hated them my whole life but it would be difficult if I was asking for them.

@ElmtreeMama just wanted to pop on here and say thank you, I attended the meeting at the dementia unit with DF social worker and another couple of family members and I quoted you regarding his dementia becoming worse due to him being in an inappropriate location etc. It seems to have worked and the social worker is active in finding him a new placement and their may be some news next week. DF has been harmed twice by another resident since the meeting, punched in the head and grabbed with his skin tearing (took two staff to get the man off DF).

I've managed to get rid of the utterly useless social worker (she didn't show up to the meeting) and we now have the team leader. Unfortunately DF behaviour and dementia have got worse and I've had to start refusing to take calls from him and he rings me to swear and tell me how useless I am.

It's heartbreaking watching him slip down again, I have fought so hard for him, spoken to everyone I can think of and made complaints everywhere and to be abused by him like this is the final straw I've not spoken to him for 2 weeks. I would like to say it's the dementia but it's not he was like this before he got sick he just doesn't hide it in public anymore.

@Farmageddon @letscallaspade @Neolara

Neolara I'm witnessing the same at my DF care home. Outstanding, glitzy home one of the best etc...however carers sat scrolling phones, not interacting. Although the "care" looks to be done. Would love some advice on what to say or do about this.
Unfortunately this is probably quite common. I have found that even though the carers are nice, there is little to no stimulation or interaction, unless the radio or tv is on - and even then most residents aren't really watching.
When we go in to visit my dad he really perks up having one to one attention, which I understand they don't have time to give everyone, but it's so sad because it makes such a difference to their day, and some people seem to get no visitors.

Obviously first port of call is to address it with the care home staff but
Just to say that if you can afford it one option is to pay an external carer to go into the home to do that one-on-one interaction/stimulation for times when you can't get there.

It would never have occurred to me but in the course of interviewing carers, I came across this a couple of times where carers were doing this for people they had previously cared for at home.

It means they are seeing a familiar face regularly and getting 1-to-1 attention when the care home doesn't have the capicity to do it.

@ElmtreeMama

are there any nursing agencies you'd recommend that provide specialist dementia care at home?

Sorry @ItsAllSoBleak you'd be best to ask around your area, ask social services which ones they recommend.

@Tara336 gosh, I'm so sorry. That's hard.!

@ElmtreeMama

I've already tried which is why I was asking. Social services have no idea because they aren't set up for this kind of care. Once you get to that point, from social services point of view it's a care home.

The social services/ caring world is not set up to support people who are trying to manage to keep someone in their own home. Sadly.

@rileynexttime thank you, apparently one of the staff told DM yesterday when she was visiting that DF had been asking to phone me and had got upset when told no, the problem is that some of the staff seem to be temporary and get very judgemental with us when we won't take calls, but all they see is a man with Vascular Dementia and not a man who thinks nothing of swearing and being nasty the minute he gets hold of a phone.

My aunt has dementia which worsened rapidly after being put into a care home. She had no POA in place so social services have guardianship. The care home and social services have said that she is only allowed visits on 3 days per week (although no limit on amount of visitors on these days which I find bizarre) as they say it upsets her. They are keeping her in her bedroom, feeding meals in there as she gets upset in the main areas of the home.

When I go to visit she is always upset on arrival (I can hear he shouting for help as I go down the hallway) and I usually find her covered in food with the majority on the floor so they do not appear to assist her with eating and drinking. She has lost about 3 stones since being admitted in early April. She is always pleased to see me and tells me she is frightened/doesn’t like the home, and I try to reassure her (I do have some experience with dementia as a care worker). I usually leave her in a calm manner and better than when I came in. My cousin (her daughter) adores her, has always been very close and does get visibly upset on her visits-but tries very hard to stay positive and my auntie is much more relaxed when she visits.

The care home refused a visit from my elderly father as it wasn’t on a visiting day, even though he explained it was the only day he could visit. They didn’t ask my aunt if she wanted a visit from him, or if she felt able to it -she would have loved to see him and often asks for him.

Do you think this is appropriate, do they have any justification for this (categorically no worries about elder abuse from any of the family)? I feel short and frequent visits, spread out over the week would be better. Do you have any guidelines or policies to link that we can use to argue for this?

@trockodile I'd be asking to see the documented capacity assessment and best interest decision documentation
Ask if they have consulted an independent mental capacity advocate and if not why not.

Thank you-we have a meeting on Wednesday so that’s a great starting point.

@ElmtreeMama thanks for this thread, very interesting. My mother has died now so this is a moot point, but I’d be really interested to hear your thoughts.

I know advice is usually to go along with their delusions rather than trying to correct them, but my mother often had very dark delusions, particularly about my father. She would get really upset about how unkind and cruel he was to her, how he left her alone all the time, shouted at her, humiliated her, etc. I know this wasn’t true - my father is the gentlest man imaginable. Initially I tried to point out it wasn’t true but kind of felt I was gas lighting her because in her world it sort of was true. So in the end I’d try to make excuses for him - oh, I’m sure he doesn’t mean to be unkind, he’s been feeling unwell so maybe that’s why he’s not his usual self, etc. But then felt very unfair to my dad agreeing he was doing awful things I knew he wasn’t - and also reinforcing my mothers believes that he was awful. She was really scared of him by the end and we were quite worried she’d hurt him sometime lashing out in fear (which did happen a few times - she hit him with her walking stick). How would you advise dealing with these situations?

Is a nursing home inevitable?
My MIL has been diagnosed & I'd hate to see her in a home. But I doubt my FIL's ability to cope long term.

My mum has had dementia for a while, only just diagnosed due to reluctance, covid etc
She then took a downward turn, double incontinence lost in her own home very confused etc so moved into a care home
She was originally content, even if she had no real knowledge of where she was, what was going on, etc. Couldn't speak coherent sentences etc or relate to events like death of a friend . But content

She's become v agitated now, often all day in bed, sometimes refuses food and meds

Sorry for the long post and appreciate this us a tough question. But would you expect her to survive much longer. Her quality of life is non existent, its terrible...

Thanks

My mum keeps finding everything tastes salty and as a result hardly eats during the day, just has an Ames shake and drinks water. She eats a full evening meal and lots of chocolate but we’re worried as she is very slim naturally. Is this typical in your experience?

Hello I’m looking for some advice. My brother has FTD and i am concerned for his well being. His wife took over his full time care and told me I wasn’t allowed to be apart of the family meetings with his nurse etc, my issue is my brother wanders the streets for hours on end everyday, he comes to my door and walks in the house anywhere from every 20-mins to 2 hourly. I have done and am doing all I can to help where I am allowed but myself and my wife’s relationship is getting strained as we can go out walking with him an hour everyday but he will still come back an hour later and want to go another walk and it can take up to 30 mins to convince him each time that we can’t. We are no resorting to locking our door and having to park cars down the street at times so we can have some time once home from work etc. I don’t want this to come across like I’m not wanting to care for my brother but his full time career (wife) wanted to care for him but just let’s him walk the streets never to be seen walking with him. He is now asking strangers in the street if he can walk with them and telling people including children that he loves them which is not fair on himself or the people involved. I’m wondering how I can go about this as I have messaged his wife to tell her I think it is time she looks into carehome for him as he isn’t washing now and she said he has started having angry outbursts which is not what I would want if he is out walking streets alone either. She just seems to keep shrugging it off and letting him do what he wants even when it’s not in his best interest? Long post but I’m unsure where to turn? Any advice?

Yep. This is a safe guarding issue. Report your concerns to social services and have them do a welfare check. His wife can’t cut the family out of discussions about his care unless she has lasting power of attorney (LPA), and if she hasn’t got that already it’s too late now, as it sounds as though he no longer has capacity. An LPA can’t be drawn up unless the person giving it (your brother) has the capacity to understand what he’s doing. As a family member you can also report your concerns to the Office Of the Public Guardian and if there is no LPA in place, you can ask them get the court of protection to appoint a guardian to look after his welfare - you can ask for them to appoint yourself as guardian, but it’s a lot of responsibility and if it’s too much for you, they will appoint an independent. Either way, it doesn’t sound as though his wife has his best interests at heart, and you need to make sure someone is looking after his interests.

Hi - my mum was diagnosed with dementia a couple of years ago and we’re experiencing the same thing. She’s existed on ensure drinks since her appetite diminished and has little snacks during the day which I try to make as calorific as possible. She has weighed about 61/2 stone ever since. She hasn’t eaten a full meal in a couple of years but the shakes and snacks keep her weight stable. Ask your GP for a referral to a dietician if you’re worried. We found it really helpful as she advised things like blending powdered milk into full fat milk before making up the shakes to boost the calories, and including peanut butter into snacks.

Oh god please don't do this. You will absolutely destroy any hope of a relationship with his wife and not necessarily be in a better position.

You need to have a proper conversation with his wife. Find out what support they have at the moment and what might be helpful for them.

She might not feel ready to think about care homes yet even if you think it's a good idea. He might not even meet the criteria for a care home if he can manage a fair amount independently. He might have said he doesn't want to go and might have enough capacity you can't force him.

She might let him leave the house because that is the safest thing for him, it might prevent him getting distressed and risking violence. There could be options such as trackers if needed.

She might have CMHT input who are already looking at the risks and seeing what is the safest thing for them both.

There are lots of mights here because it is a complex situation with lots of unknowns. You don't have any "rights" to know anything about his care unless he has told his care team he wants you to know (or you hold POA).

Honestly the best thing to do is talk to his wife, ask her what they both want instead of telling her what you think should happen and listen to what she tells you. His best interests needs to be what he would want for himself if he was well and had capacity not what you (or others) think is best for him.

It's actually very difficult to prevent another adult from leaving their own home, short of locking them in and hiding the keys, which is a whole other bundle of joy for everyone concerned, and probably a health and safety nightmare with a mobile adult with limited understanding. @Anon389 , what do you mean by your brother's wife taking over his full time care? Were you involved with it before this, or is it more that you feel shut out from the process?

my relationship with his wife is already non existent basically, she messages wanting me to help out a couple days a week (baring in mind I work full time as does my wife) but then doesn’t want me included in any meetings with his dementia nurse. To put it bluntly we know that’s because she is telling lies to the nurse and doesn’t want us there to question it. My brothers dementia nurse has already told the wife it’s time to look at care homes and he was offered one but she has refused it. She signed to be his legal guardian which we all agreed to because she is his wife and we assumed she would look after him. He has declined rapidly. She has respite 3 days a week at the minute for him. He repeats the same 3/4 sentences everyday every hour. Hasn’t washed or shaved or cut hair in weeks. Walks about in 28degree weather with face and head red raw. While his wife spends all her time sending him up and down to the shop. The problem isn’t him out walking it’s the letting him out for 5 hours a day walking by himself appearing at my door every 20 minutes without a clue he has even been 2mons before