Author: Peter

Notices

• Janet talked about Good Hydration and how to ensure that someone is not becoming dehydrated. The Dementia UK website has lots more useful information.

Member updates

Problem carers

A mum is a bit negative and anxious when going out. Her daughter has changed tactics, not telling mum when they are going to go out until just before, when she’ll say “get your shoes and cardigan on”. They are having problems with carers that don’t turn up at the arranged time, not talking to her mum, and not staying to the arranged time. Today’s carers were quite brisk and loud speaking. The daughter sometimes will be working upstairs and can hear what’s going on – sometimes the carers only stay for 3 or 4 minutes. There is a picture calendar on the wall so that carers can talk to mum about it – some do talk to mum and some do not do anything. Janet asked if they log in and out in a book? There is a book for any issues and an on-line system, but it’s difficult to get on and it’s kicks you out. Tatiana recommended collecting evidence and get more understanding of the system.  When do they record? Who’s checking? Does it work as it should? It is important for management to know how the carers should be talking to the people they are for.

Time for help – but what sort?

A sister went to the Memory Clinic and has been given Risperidone medication [you may read more about antipsychotic drugs here]. She said she doesn’t want to be “spaced out”. She has cut the tablets in half and today she said she only has one weeks supply. She rang tonight saying she’s too tired and has thrown the box away. The brother is going round tomorrow to sort it all out, he said it’s approaching the time when she will need someone to come in to help. She’s been burning food again, but doesn’t know how often this is happening. Another carer had the fire brigade up to her mum’s house to assess and fit appropriate detectors and alarms [you may read about the London Fire Brigade’s home fire safety visits here]. The brother wants to put in a camera, but his sister won’t have it. Janet said some action needs to be taken as these are important tablets and you can’t just stop and start taking them. Janet recommended contacting the head person at the Oxleas memory clinic (Monica Crugel) and ask for another opinion.

Going for a walk

A carer has had a very stressful time as her husband went walk-about on Monday, leaving the front door open. He went out in slippers and no coat. It came up on the new Ring doorbell – it’s stressful every time her phone goes off. He is mobile and active, but not steady on his feet. The neighbour saw him go to the end of the road and back again. If it happens again she may have to give up work and set up a rota. Tatiana asked there is it the same or different times when he went out? Is he looking for some stimulation? Maybe more interaction when he’s on his own. His wife said there wasn’t a pattern. Pre-Covid he used to walk a lot. Janet suggested speaking to Maria Jenkins (Volcare) they provide half a day or one day once a fortnight. They provide a free service (Greenwich and Bexley).

You might empathise with the author of the popular blog:

Midsummer Madness by Georgina Grant

Next meeting 14th November 2022.

Notices

• Reflections is part of Greenwich Demential Action Group (DAG). Angelika, the group leader, is holding workshops for Lasting Power of Attorney (LPA) at the Eltham, Greenwich and Woolwich Centres. Details are here.
• There is a new Oxleas – Greenwich and Bexley team. They will will starting a year long project testing and implementing support for dementia in care homes, looking to reduce medication, one to one support and placement breakdown. Initially to work with five care homes and then may roll it out to all care homes. Hannah Debenhams is the new senior manager
• MIND  – have a Memory Cafe at the Carers Centre (Stables) first Thursday of every month. They will have  activities and there will be someone from MIND to talk to.The next Carers training programme will be in November.
• Assessments – Oxleas have a ten to eleven week wait for new people. People with urgent needs will be prioritised. They are struggling to fill vacancies and have a locum consultant at the moment. Greenwich is behind the national average to get a diagnosis. Louisa will be at the Carers Centre on the first Thursday of the month 1.00 – 3.00 pm. Magic Moments is the same day from 10-00 – 12.00 for anyone with dementia diagnosis (discussions, quizzes). It’s upstairs and there is a lift.

Member updates

Holidays

Husband and wife carers have been away to France and are feeling refreshed. The husband thinks his sister switched her phone off, but a relative fixed it. They think maybe she turned it off and couldn’t remember how to put it back on. They haven’t broached the subject of medication yet and the sister hasn’t made an appointment.

Another carer has also had a week away (very nice). She had everything in place for her mum before she went. Mum was ok – but slightly more confused. She doesn’t remember that her daughter has been away. Her doctor says that mum is physically well. The daughter said she needs to worry less. Janet – it’s the nature of dementia, always anticipating, enjoy the love. The daughter is going to trust her sons more and she might go away again!

Visitors

A daughter said her dad had good days and bad days. Her dad’s brother came for a visit. Her dad had not seen his brother since 2018 and it was good for him. He did recognise his brother and was able to follow the conversations. Her dad didn’t recognise some of the other family members. When his brother had to leave it was hard for them both. They are going to enjoy things in the moment.

Jigsaw puzzles

A step daughter had nothing dramatic to report. Some parts of his mind seem to function and some parts are like a jigsaw puzzle with bits missing. He is still collecting stuff that people put out side (for example – a chest of drawers). She is worried about the heating bills as he does not have central heating in the house, just plug in appliances, heaters, fans etc. Janet asked does he heat all the rooms or just the ones he’s in? She said – the water is heated in the tank and there are a lot of trailing cables to worry about, but his son is the main carer and is aware of the situation.

Jelly drops

A husband had gone out on his own, leaving the front door open and without keys. A neighbour called her. He doesn’t remember going out. His memory is getting worse. His diabetes and diet are ok. He uses jelly drops for a liquid top-up. They are expensive, but they stop him getting dehydrated. He has arthritis in his hands quite badly and has difficulty opening the tray as it has two layers. He has to work out how to get them out and where the edge is to open them. Janet – suggested contacting the company about the design of the packaging. Another carer suggested an internal cameras so the wife can see what’s going on (the system has a microphone too). She uses a Ring Doorbell. This carer said she is able to pick up on her mums behaviour and if she is getting agitated or anxious. It gives her reassurance.

New

A new member of the group said that after listening to everyone he has gained insight in what is to come. Janet said everyone’s experiences will be unique to them. Group members all told him how long they had waited for diagnosis and how the dementia had progressed. One has not yet been diagnosed. The new person talked about his wife’s constant tiredness. Today she didn’t feel well, but did attend her appointments. Tatiana – asked if she sleeps well and was she eating and drinking enough. He said that she says she is not hungry. She goes to bed early and gets up late. They are waiting for a sleep monitor. She’s a light sleeper. Tatiana asked if she has lost interest in doing certain activities, as she may be depressed. Janet said, due to chemical changes in the body, “tiredness” can be depression. He said he will bring it up with the GP as she had antidepressants before when she had a spine problem.

You might empathise with the author of the popular blog:

Midsummer Madness by Georgina Grant

Next meeting 3rd October 2022. Please note, this is a change to the first Monday in the month.

Becoming withdrawn

A carer told the group it’s hard to get her step father to talk. He’s a bit more withdrawn than he used to be. He gets confused from time to time. His son is involved and visits him at least once a week. The dad wants to take his son to Paris, but the step daughter doesn’t know how much enthusiasm he has for this. She thinks his son should be doing more. She feels when she suggests things she is treading a fine line.

Falling

A husband says his wife is fairly active at this time of day [8pm]. Last month at the end of a meeting he found her laying on the floor. She had fallen. She doesn’t fall with a bang, so it’s difficult to know when she misses the chair if he’s not actually with her. She falls 2 to 3 times a week. When he went to visit his mum in Cornwall the carers struggled to get her up the stairs. Its  difficult when he goes away. He is thinking about a space for a bed downstairs – eventually. He is thinking about a chair lift, but it would be difficult to get His wife in it. They still go for walks in the afternoon. The house is familiar and keeps her settled and calm. Janet suggests he needs his respite.

Additional illness

A person being cared for by her brother and his wife have found that she is tired from a lot of hospital visits. This said, her treatment has gone well, though she complains of aches and pains. Her two carers made sure she was ready for her last treatment despite her saying she wasn’t going. She is now free of her illness, but she tells people she is still ill. She has to be reminded that she’s ok. 

She has been to the memory clinic and was told she needed to be put on antipsychotic drugs. Janet advised looking up antipsychotic drugs and the associated issues, due to the potential risks. Tatiana recommended discussing more with the Doctor and ask why they recommend it and suggested it should a small dosage to start with. Also, if the carers agree to this route they should insist on regular reviews.

A daughter told the group her dad was sectioned at the end. She was concerned when he was on antipsychotic drugs. He changed dramatically in a week, but the drugs did have the desired effect. It was such a shock. She recommended exploring everything first. Janet said the use of antipsychotic drugs in care homes went up 50% during lockdown.

The daughter suggested anti anxiety meds maybe a better route and to find out what happens if she should stop taking the meds or not take them regularly. Janet said information about antipsychotic drugs is on the government website and the Mind website.

Becoming anxious

A daughter said her mum is gradually declining and getting anxious. She has spoken to the carers agency about the meds box. Mum forgets to get dinners out and sometimes cooks 3 dinners. She peels loads of potatoes, carrots etc but it keeps her busy. Tomorrow she is having a bowel check and The daughter is concerned about the colour of her mum’s legs, which is getting worse. Mum says someone is stealing her underwear, although she has plenty. Mum has called the police saying she’s been burgled – someone had taken her knickers. The daughter now keeps some at her house so she can take them round when mum can’t find any. The police station now have mum’s details and occasionally pop in to see if she’s ok.

Further information and good reads:

• Janet – read from the website Forward with Dementia which is “a guide to living with dementia”.
• The Alzheimer’s Society’s Dementia Together magazine has interesting and informative articles.
• My life TV offers a mix of programmes. You need to subscribe at £3.99 a month.
• The Power of Smell is worth exploring as this care site explains.
• The Recovery Magazine latest edition is here.

and the ever popular blog:

• Midsummer Madness

Next meeting 12th September 2022.