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Care & carers

Advice on how to manage mums increasing dementia like symptoms

(26 Posts)
Elsine Mon 10-Jul-23 21:12:23

Mum is 82, own home, my brother lives with her and looks after her. Mum we think has dementia- gp phone assess several months ago- no diagnosis given! Brother does everything now- brother has now had enough because Mum now really anxious when alone & calls him constantly wanting him home! She refuses carers etc and doesnt engage with anyone else local! I live other end of country- my house isnt suitable for her no assisted bathroom or stairlift and have ageing unwell hubby. What can i do? I fear brother will walk out one day and what can i do? No poa in place!

Saxifrage Mon 10-Jul-23 21:57:52

I do sympathise as I am a carer for my husband, it can be very exhausting and mentally draining when they need permanent attention. If your mother refuses all help then sadly, sooner or later there will be a crisis, an illness or an accident and then social services get involved. It is worth trying to convince her to accept some help before that happens, your brother or you may need to be pretty tough. Could you start gently suggesting meals on wheels, a cleaner or similar help. Good luck

Jaxjacky Mon 10-Jul-23 22:16:21

I would engage with adult social services now and explain, so they have some details ahead of possibly needing them, it comes down to safeguarding your Mum. A word with her GP would also be advisable, some bp dementia can accelerate quite quickly.

Hithere Mon 10-Jul-23 22:27:40

For your brother's sake, look for a care home for your mother before a crisis happens

Primrose53 Mon 10-Jul-23 22:34:26

Jaxjacky

I would engage with adult social services now and explain, so they have some details ahead of possibly needing them, it comes down to safeguarding your Mum. A word with her GP would also be advisable, some bp dementia can accelerate quite quickly.

Unfortunately without prior written agreement it is very unlikely that the GP will discuss your Mum with you or anybody else.

Primrose53 Mon 10-Jul-23 22:38:36

If I were you I would get up there asap for a few days and the 3 of you can discuss what you are going to do. You also need to set up POA urgently.

You have to be quite direct with your Mum and tell her you are very worried that she may not be safe at home and it is becoming too much for your brother. It would be a good idea also to thank your brother for all he is doing for her so he knows he is appreciated because it isn’t easy.

Primrose53 Mon 10-Jul-23 22:39:37

Oh and chase up with the GP because it sounds like she needs to be helped by social services.

Esmay Tue 11-Jul-23 08:28:23

Great advice from gransnetters :

Phoning relatives up demanding their attention all the time is common .
I feel very sorry for your brother .

I had it before I moved in and now my father actually fakes illnesses to prevent my going out .
Yesterday , I thought that he could have surpassed Olivier at the Royal Shakespeare Company .

Please sort it out before things go really wrong for your poor brother's sake .

Redhead56 Tue 11-Jul-23 08:44:59

Been there I was the main carer for my mum until I could not take it anymore. I know how difficult it is you need to insist the doctor gives referral to Social Services they will appoint a social worker. It sounds ridiculous but you and your brother have to be pushy to gets things done.
Your mum is not in the position to make decisions and pick and choose who looks after her unfortunately. She is obviously not safe and your brother cannot be there 24 hours you need outside help. Please take advice given the sooner help comes the better for all concerned.

Wyllow3 Tue 11-Jul-23 09:01:02

Brother as primary carer will be accepted by GP.

Very good advice here re early contact SSD. Initially ask advice asap? If brother is at the point of walking out or close - say so!

My sympathies for you and others in this situation flowers

Jaxjacky Tue 11-Jul-23 09:02:51

Primrose53 I emailed my Mums surgery explaining my concerns and he made an appointment with her, which I attended too, on the pretext of checking her back problems. Whilst there he slipped in a mini memory test, that started off the eventual dementia diagnosis and action.

silverlining48 Tue 11-Jul-23 09:03:13

I think you need to Visit your mum to see for yourself, it will give your brother a break and give you the opportunity to assess things for yourself. Suggest you contact GP and social services for assessment /help/advice.
Your mum may have a urine infection which does cause confusion and anxiety.

Elsine Wed 12-Jul-23 15:14:07

Thank you for responding! We have tried discussing the home help/ befriender but no joy 😩

Elsine Wed 12-Jul-23 15:16:40

Mum was poorly a few months back in hospital, we discussed situation with local social worker but mum refused to engage and without diagnosis no joy! Thank you for responding, much appreciated!

Elsine Wed 12-Jul-23 15:20:05

I am up there most months and also frequently let my brother know how much i appreciate all he does for mum! Neither of us want her in a care home and without diagnosis cannot force her to have carers etc as it is her house and she will tell them to leave! We asked the Gp to sign POA but she refused- told us to get a solicitor!

Primrose53 Wed 12-Jul-23 15:33:18

Elsine

I am up there most months and also frequently let my brother know how much i appreciate all he does for mum! Neither of us want her in a care home and without diagnosis cannot force her to have carers etc as it is her house and she will tell them to leave! We asked the Gp to sign POA but she refused- told us to get a solicitor!

You don’t need a solicitor or GP to sign for POA. Your Mum and you can do it yourself (or your brother) and you just need somebody who has known your Mum a while to witness. Could be a neighbour, someone from church, etc.

The forms are on the Gov.uk site and very easy to complete. You then pay approx £80 for each part, send them off and they register and authorise them and return.

When my Mum was diagnosed the Psychologist who came out and tested her said POA was the most important thing we could do at that stage as the decline could be rapid or slow but once it’s done, it’s done. Absolutely invaluable for us.

Hithere Wed 12-Jul-23 17:26:49

Op

This is your reality
Your brother doesnt seem to be her carer (his right)
Carers and nursing home are not wanted
No diagnosis

I honestly think you are being unrealistic or maybe in denial?

I would start by getting a diagnosis and poa

Then make the decisions that are best for your mother and everybody involved - despite the whining of family members, do not allow yourselves to be emoteionally blackmailed by your mother

Hithere Wed 12-Jul-23 17:27:54

Your brother doesnt seem to want to be his carer, sorry

Elsine Wed 12-Jul-23 20:37:03

Hi thank you Primrose53 but mum doesnt have any friends or neighbours who have known her for years, most of them moved away or died so lots of new people. We all filled in the forms (i have 2 other siblings) but Gp wouldnt sign and brother gave up!! So we would need to do it all again with a solicitor!

Doodle Wed 12-Jul-23 21:26:06

You need to get the Gp to give a clear diagnosis. Sadly POAs are difficult to arrange when someone already has dementia.
Your brother needs help. Living with someone with dementia is exhausting and certainly difficult if your brother has to work.
My brother didn’t want a carer either but in the end accepted her and they had a good relationship.

win Wed 12-Jul-23 23:07:40

As already suggested Direct Care (Social Services) is your first port of call to get your mother's needs assessed.

Contact your carers link (Local Council) to get a carers assessment for your brother. Unless he totally refuses to be involved which is his right, but he must say so and stand back or you will get no help.

Get a GP appointment for your mother on the pretence of a MOT due to her age, say it is what everyone has and write the GP a letter in advance stating your facts and issues. He should do the mini test and if he agrees there are concerns refer your mother to the memory clinic where she will be fully assessed.

Your. mother can refuse it all, but you also have a choice although it is hard. You can stand back and wait for the crisis when your mother will end up in hospital and then a care home, or you can take over now and start getting her and your brother the help they need now and even more so in the future. It is tough being a carer. I have been there 24/7 for many, many years and still am now 3rd time around. It is exhausting to say the least, particularly as you have to fight for everything, but I never regret one minute of it either. Good luck.

Wenmore Mon 24-Jul-23 12:31:37

Alzheimer's UK have a website, telephone help centre, local groups and an online forum. They cover ALL types of dementia and are a wealth of up to date information and can point you in the right direction to get help locally.
My mother was extremely affected by various dementias and despite getting all the support we could she was ultimately sectioned (no POA) and hospitalised, this led to her spending her latter years very happily in a care home. Like you my brother lived nearest and was carer but he was ultimately unable to cope, nor would she let him. Your mother's GP should discuss any fears you have re your mum and dementia and alert the relevant organisations to diagnose/help. There's often not a long term solution (depending on the level/symptoms) and ultimately a home is the only option. We tried everything to keep mum at home but it was impossible to safely do so.
Sorry to be so gloomy but l have also worked in dementia care and few realise how bad it can get (for all involved). I wish you all the best.

Joyfulnanna Mon 24-Jul-23 13:42:12

Something will happen that will cause a crisis and you and your brother will need to find a care home to meet your mother's needs. The difference is that you either look for one now and compare prices and facilities or you do it urgently when the time comes. Better to look now when you have time to think about it. It's all well and good saying she doesn't want this and that but your brother needs to take a firm stance if he can't cope with her changing needs and you need to stay focused on that. These are different from what she wants..let her have a respite stay in a care home for a couple of weeks, it worked for us. Mother was more accepting after that and not so anxious.

win Mon 24-Jul-23 13:59:44

Do you have an Admiral Nurse in your mothers area? They are the Dementia specialists, all grade 7 nurses with additional Dementia knowledge. Dementia UK will advise on where the nearest one is to you, they are your lifeline and are primarily there for the carer. They also have a brilliant help line.

Elsine Mon 24-Jul-23 19:34:59

Thank you Win for your response, i wrote to Gp who rang her and told her i had been in touch!! (Why they had to tell her 4 days before they could actually see her??) we had a big row and She is now barely speaking to me!! Gp came out (i couldnt get there) brother was there, prescribed ensure we asked for and mum agreed to blood test and xray! Gp asked mum to have help in so brother could go out but no! My brother now tells me he has had enough- mum is cross today when he reminded her he was going to be out for the day next weekend and i will be there!! Its so hard- she wont cope if he leaves but neither will she go anywhere else!! No idea if GP did assessment!!!