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Member updates

Family difficulties

A mum has had dementia for seven  years. During her daughter’s own cancer treatment she was looking after her mum as well. While the daughter was at a vulnerable time her brother and sister took over caring for mum and cut her out. She doesn’t know why they are being like that. The sister is overturning mum’s decisions. She has put cameras in mum’s house – even in the bedroom. Mum lives in her own flat and her brother and sister go round for meds. Her sister has Lasting Power of Attorney (LPA).

The daughter had spoken to the Social Worker but did not feel her concerns were addressed. Janet recommended asking for a best interest meeting. Tatiana said Social Services have not addressed the daughter’s questions (manipulation, safeguarding) and recommended emailing them saying she is not satisfied and to set out all her concerns.

She needs to tell social services about the cameras (invasion of privacy) and how mum used to be. Also to say that she has less interaction and outline briefly what has happened  and  the effect it’s having on her. Tatiana – also reiterated safeguarding and highlighting the cameras.

Peace of Mind

Another mum is more settled in her care home home. After a hospital eye appointment mum was able to settle back in quicker. It’s a lovely home. The staff are hardworking and caring which gives the daughter confidence. She was confident enough to have a holiday in Italy.

Council Funding

A mum has had another assessment. Finally someone came from the financial team and recommended that they have funding from the council. Her mum is stable and happy. The daughter said thank you for the advice last time, it was very helpful.

Keeping in Touch

A brother living abroad is is ok. Some weeks they only have short conversations but he still knows who his sister is. She isn’t always able to speak to staff in depth due to the time. Guardianship is all arranged. Someone takes her brother out weekly. He’s not so happy going to crowded places now.

The next meeting will be on Monday 8th April 2024.

Member updates

Resilience courses

A group member said she is interested in more Resilience courses as she really got a lot from the last one we hosted last year from Time to Talk and found it really useful.

Multiple illnesses

A brother told the group that his sister has advanced cancer, which has spread. He and his wife wanted her to enjoy the life she had left especially as her dementia is progressing. However, she was subsequently persuaded to have chemotherapy by another sister. As a result, he has passed the caring responsibility to the sister. His sister with dementia is already not regularly taking her dementia medication and he doesn’t think the sister taking on caring duties really understands dementia.  Janet said she hopes his carer sister is keeping a record of how the chemotherapy is affecting his sister as this will be discussed at reviews for adjusting the chemo doses if necessary. Maybe contact the dementia nurse at the hospital to see if they can offer any support. Janet asked about Lasting Power of Attorney (LPA) for health – no one has this.

Falling

A wife had a nasty fall last week. She fell in the hall and hurt her nose, she is bruised. She’s not in a good place at the moment. He is investigating stair lifts. His wife is very tactile, she likes to touch the floor and that’s probably how she fell. She’s breathing ok. Her main activity seems to be spending time in the hall. All very odd! 

Care Home success

A daughter said things are all pretty good at the moment. They tried to reduce her mum’s meds, but it didn’t work. It was put back up again.  They enjoyed Christmas at the care home. They all got a present. It was lovely and they had a nice time. There was a New Years Eve party too. Her mum is ok and gets involved in some of the activities, so it’s all worked out well. The financial revue has not been not done yet. Tatiana suggested that the daughter could email them again as there has been a holiday / lack of resources / priorities and as long as you’ve contacted them they will get in touch. It is important to have something in writing to evidence you have made contact. Janet recommended speaking to the care home manager about it. All her family have recently completed LPA’s. 

Tatiana said that Independent Age, a charity for older people has information on funding care. Their guides can be found here (the one titled “Paying care home fees in England and Wales” was recommended for this carer’s needs). They also have a Helpline.

Another daughter took her mum to the Brands Hatch hotel to see old friends of her husband. Her mum had a great time, she knew all the people and they made a great fuss of her. Christmas Day was also good with Mum visiting the daughter’s home for the day. Sometimes the daughter questions if she has done the right thing putting her mum in a care home – but she knows she has. The home is brilliant – it’s the making of the decision that’s hard. 

The next meeting will be on Monday 5th February 2024.

Member updates

Caring at a distance

A brother, who lives abroad, has good days and bad day. The sister can’t always follow what he’s saying. Janet suggested trying to analyse what pops out of their memory and which decade he is “living in”, this will enable her to focus their conversations on this period. Janet asked if his care home keep her updated. The sister receives feed back through a friend who visits her brother. Tatiana suggested asking for the care home manager’s details and asking them for monthly updates (by email, zoom etc). The sister should find out what is the process to review the care plan and how often it is reviewed. Then she can ask if they can do it on line and/or could her friend attend?

Stairs

A wife can’t work out how to come down the stairs. She has had this issue before. The husband is hoping it will be temporary (it could be due to a UTI). He can just manage her down the stairs. At some stage he will have to look at options for the future – like a stair lift. As long as his wife is safe he wants her to be at home.

A great care home

A mum is ok – her care home is great. Mum is now high risk at night, so has a tracker in her room. She is just about remembering her daughter. The money for self funding for the care home is running out. Tatiana advised contacting Social Service now. They will look into the situation, but she should keep emailing them and keep on top of any progress. The daughter wanted to take her mum out at Christmas, but the home was reluctant. Janet said the care home is her home where she is living. She should be able to come and go as appropriate. The daughter should have a discussion with the home, listen to their concerns and come to a balanced decision.

Isolation

A husband explained his elderly wife has had symptoms of dementia for 5 years. It started with driving through red traffic lights. She also fell down the stairs which led to complications. They do not go out much and feel isolated They both suffer from social anxiety. She now can’t have a conversation. Her words get all jumbled up. He has to read what her thoughts are. The social side is really hard for them. They prefer being at home. They are going away for Christmas with their daughter as they can’t face being at home. Their friends are falling away since his wife’s diagnosis. His wife knows something is wrong. 
Another carer suggested contacting the Time to Talk team. Janet said being able to talk to someone who doesn’t know you and where you won’t be judged will help you to find your way through. Other suggestions included:

• visiting a dementia inclusive cafe Greenwich – several have be accredited by Dementia Inclusive Greenwich.
• Revitalise run breaks for carers and people with dementia at specific times of the year. 
• Volcare Greenwich can provide free carer support for respite from a few hours to a day.
• Miss Mardle Companions have been used by other Reflections members to provide respite.
• Tatiana recommended asking the GP for a Talking Therapy referral. Time to Talk can be done via self referral here. 
• Greenwich Carers Centre can provide ongoing support for carers. There is a representative at every Friendship Group session.
• Charlton Athletic Football Club run a weekly social group on Wednesday mornings from 10am to 12pm as part of their Community Hub called Extra Time.

Lack of Support from family

A daughter told the group her mum is not too bad, but the daughter has no support and she is so tired. Her mum has her up 2 or 3 times in the night. Her mum wants to “go home” and is at her side all the time. She feels let down by her sister and feels angry about the rest of the family. They have no idea what she has to do.

Janet suggested sitting with her sister and explaining how she feels. Sit her down and ask her so that you can get closure. You can explain I know this is what I elected to do but I would appreciate it if you are able to offer some support to me. Ask : What are you able to help me with? If you are not prepared to help me then please say rather than give me a false promise. If the sister can’t/won’t do anything you can then draw a line under it and make alternative plans. Look at what you can control. Decide, do you want  a good relationship with your sister? For your own mental health try Time to Talk – you are not judged and you can ask for a different councillor if you don’t feel one is right for you. 

The next meeting will be on Monday 8th January 2024.