Category: Carers Group

Innovations from the Alzheimer’s Society Innovation Hub

Eargym hearing app for hearing health checks.

Hearing loss isn’t just for older people. From understanding your hearing age, to strengthening your hearing skills with immersive games – Eargym aims to make better hearing accessible for all.

Hearing loss and dementia related. Hearing loss is correlated with mild cognitive impairment and dementia. Research shows that even mild hearing loss doubles the risk of dementia (see the RNI:D article here), while moderate hearing loss triples the risk, and severe hearing loss can increase the risk up to five times. To reduce the risks of hearing loss and dementia, it is important to look after your hearing and health and treat even mild hearing difficulties. 

The Alzheimer’s Society suggests the following ways to support someone with hearing loss and dementia: 

• Ensuring regular hearing health checks 
• Wearing hearing aids and treating the hearing loss as directed by an audiologist
• Learning to communicate with visual cues, prompts, gestures and expressions

Sibstar a debit card for people with dementia.

The Alzheimer’s Society say Sibstar is the first, highly secure debit card and app designed to help families living with dementia to safely manage their daily spending. Amongst other things, the app gives you the ability to set daily and monthly spending limits, switch cashpoint, and online it adapts as the needs of individual customers change, delivering financial independence and enabling people with dementia to continue living life the way they choose. The costs are: £4.99 setup, £4.99 a month to run the app and 99p per withdrawal.

New and improved Jelly drops

Jelly Drops have launched a new version of their sugar-free sweet designed to help those with dementia who struggle to hydrate! They claim to be tastier, easier to eat & with 60% less plastic packaging. New Jelly Drops still contain 95% water with added electrolytes to support hydration. You can find out more here.

Member updates

Moving into a care home

A daughter gave an update on her mum. She is still in a care home, but she seems more like her old self. The daughter is seeing a financial advisor and is getting a house valuation. The social worker is still chasing her to move her Mum into a permanent location. However there are no spaces available that will meet her mum’s needs. Tatiana recommended asking to speak to the social worker’s manager to discuss the situation and next steps.

This article here suggests the local authority will fund the first six weeks of a temporary care home placement, where a person needs to be moved out of a hospital. If a suitable permanent place can not be found within six weeks, discussion will need to be had regarding next steps. This may mean taking on the payment of the care home place until such time as a permanent place is found.

Another move

Another daughter said her mum has had Covid in Queen Elizabeth hospital, but tested negative today. She is going to Charlton Park home tomorrow (04/04/23). She has a social worker who is learning as she goes along, but they are on quite good terms. The daughter is trying to get a financial assessment done. She has been told her mum has to have 24 hour care. She says she has got over the guilt of placing her mum in care. She said she had been told there would be a panel to discuss her situation but didn’t know what this involved. Tatiana explained the process of going to the panel to decide what happens – there is shared information from all those involved in deciding her mum’s care and the carer should be invited to give their input too. Care homes have to work with carers in placing people in the right place.

More care needed

A new member spoke about caring for her husband. They have a supportive family, but she now needs a bit more help. Her husband has planned surgery in early May and lots of appointments. He has hearing issues and had trouble with his hearing aid. – they had issues with Lewisham hospital who said they couldn’t see him for a few weeks. As his wife knew how loss of hearing affected her husband, they ended up going privately to Devika James on Lee High Road – they were very pleased with their service. The husband is now more vulnerable than he was and needs more help and is more reliant on her. She takes time out to meet a friend once a month. The husband has been referred to groups, Live well with dementia, and Cognitive stimulation group at Oxleas, plus another group at Age exchange.

Waiting lists

A sister has become more belligerent and uses colourful language. The Memory Clinic said the family will have to wait until things get really bad before they will intervene.  There are ongoing issues with her taking her meds. She is still deciding when she’s going to take them. Janet asked if is there a mental capacity test coming up. Apparently there is a 6-7 month back log, so they are waiting. Her brother was concerned about his sister saying inappropriate things when they are out, as she is prone to make personal remarks about others. This is something she never used to do. Janet advised having a discreet word with the person the comment is aimed at if he feels they heard, saying words along the lines of “I’m so sorry, my sister isn’t well ”.

Advancing symptoms

A wife has become harder to look after while the husband is away a break, as she has trouble going up the stairs. She can’t work out at times how to use her feet. Janet asked if he had considered a care home placement while he is away. He felt a respite place would throw her out of routine as it would not be familiar and she would be better at home. The husband said he has got used to how his wife is, but her daughter still finds it hard. 

The May meeting is canceled due to the coronation Bank holiday. Next meeting will be on 5th June.

About Dementia Careblazers

There is a lot of useful information on the YouTube video channel Dementia Careblazers run by Dr Natali Edmonds a psychogeriatrician (website: Careblazers.com). There are videos on many topics most of which are short. There is a free course available too, which is one and a half hours, available by providing an email address. Peter did the course and thought it was good. Be mindful, however, if you give your email address to access the free course as you will get lots of emails from Dr. E. You will need to unsubscribe, if you don’t want to receive these.

Member updates

Stability

A member’s dad continues to be stable. Lately he gets fixated on things that pop into his head. It can be challenging. At times he still believes he is at work and will ask his daughter why his meeting has not started. The daughter says “I’ll find out” rather than saying “I don’t know”, which seems to diffuse the situation. She has also been doing talking therapy at the Deborah Ubee Trust and said it helped her to order her thoughts.

Ups and downs

A brother is up and down. How he is varies from week to week. The sister mentioned a book by Oliver James on dementia Contented Dementia which she found helpful.

Coping with change

We had an update on a member’s mum, following her fall and stay in the Queen Elizabeth hospital. She is now in the Oaks Care Home, which she says is brilliant. They have sorted out her hair, nails etc. It’s only an interim placement. The daughter is having a difficult time finding a place she feels happy with for her mum that is closer to where she lives. Tatiana recommended making an unannounced visit to care homes, as well as arranged ones. Since she went into the care home, mum is a lot better, the delirium has gone, but she’s not stable enough to move out of her room.

Another mum was still in the QE. Three weeks ago her mum forgot who her daughter was. She wasn’t coping at home and had several falls. She was being found by the carer following the fall. The daughter is experiencing difficulties finding somewhere for her mum. Tatiana gave advice on different options, care packages and assessments.

A wife talked about her recent holiday with her husband. They went on holiday to Revitalise in Chigwall. Revitalise specialise in supported breaks. Everyone was very kind. They went to see The Lion King and had a trip on a narrow boat. Unfortunately her husband was taken ill while away and had to go to the local hospital. He had a chest infection and caught covid. His wife also got a sickness bug, but was allowed to stay at Revitalise until the husband was able to go home. She has decided that she needs respite, so for her next break her husband is going into care while she goes to see family.

Next meeting has been moved to 3rd April 2023 due to Easter

Member updates

A lack of understanding

A couple said things are not any easier for the person they care for. She has been to the Memory Clinic. The drug she was prescribed was only taken for 4 days. Once she read the information that came with the drug, she wouldn’t take it. She is also becoming forgetful and can use inappropriate language. Her brother is worn out by it all and is trying to step back a bit. Tatiana asked what are the medical next steps? She is being monitored, with an expected appointment in 3 months. Tatiana then asked if they had been given any recommendations and advised emailing their concerns, asking what can they do and is there another meeting planned. Janet said the person needs an mental capacity assessment and needs to be made aware of the consequences of not taking their meds. The couple think she doesn’t understand. Tatiana advised going back to the Memory Clinic consultant/ lead  professional with their concerns.

Goodbye

One of our longest standing group members came to her last meeting. Her step-father is moving to Beckenham with his son. They are looking for assisted living for him. They are also in the process of clearing the house (40 years of “junk” – he is a hoarder). She said the group has been instrumental in supporting her Mum and her step-dad.

Coping

Another carer said his mum is fairly happy at the moment and enjoys life as much as she can. He has been on a “Coping with dementia” course run by MIND. It was very good. He is thinking about moving to a ground floor flat, so that he could use a wheelchair and take his mum outside as she is largely bed bound. Janet suggested speaking to Donna Godfrey, the specialist dementia nurse, for some support and advice.

Unsafe discharge from hospital

Another carer reported her mum had a fall and is in Queen Elizabeth hospital. Her daughter is unable to visit, as she has Covid. The mum was having trouble swallowing. There was concern when the son of the carer witnessed his nan being force-fed by a member of the hospital team. When he raised it as his nan’s cheeks were full of food, the reply was, we are very busy so I need to get this done. Janet & Tatiana suggested raising this with the hospital as no matter how short of time the team are, someone with swallowing issues cannot eat any quicker. Mum is currently not mobile and the QE plan to discharge mum with a care package of 4 visits – the group thought there was an issue with this being an unsafe discharge, putting mum at risk. No one in the family can help currently and the daughter can’t help 24/7. Janet advised speaking to the dementia nurse, Kate. The daughter wants her mum to have an interim placement to see if her Mum can further recover. Tatiana asked if there is a hospital social worker involved. Not as far as the daughter knows. Tatiana felt from what was said, if the hospital were to go ahead with a discharge on Friday she considered it would be an unsafe. Tatiana advised emailing Kate and copying-in the social worker in the community who did the earlier assessment, stating if the discharge goes ahead it will be unsafe. [update: the email did the trick – the discharge team agreed to reassess mum and she has now been assigned a social worker – the daughter is very pleased]

Holiday

A wife told us she and husband  are ok. Next week they are going on a respite holiday with Revitalise, a place for people with disabilities and their carers

Feeling lucky

A new group member said he was feeling fairly lucky at the moment, given all the issues he had listened to this evening. He was interested in the course from MIND and will look into booking.

Next meeting 13th March 2023.

Janet’s information piece: Are you a “Carer”?

You are all carers. What do you think about the word “Carer”?

Janet introduced the piece by referring to the Goldster programme with Sir Muir Gray and his books Sod 60 & Sod 70 Aging Well. Sir Muir doesn’t like the word “carer”, he prefers “enabler” as he feels this is more empowering.

Janet ran some Zoom polls asking about alternative names for their role. She also asked if the carer switched rolls withe the person they looked after, would they be happy to to have someone called a “carer”. Generally members were content to be called a “carer”, but they would not like to have a “carer”.

The group discussed definitions: “Enabler” – make something possible. “Supporter” – to help someone. “Champion” – defend/fight for that person.

Language matters. We have a choice in the words we use. Often, “it’s not what you say, it’s  how someone hears it.”

A member said it depends where you are on the journey.

Another member said there’s a distinction in the language between family member carers/professional paid carers. Paid carers are not always there when something happens. Attitudes are very different.

A daughter said her mum has paid carers. Her mum would not accept having carer. However when she rephrased it to ‘helpers’ her mum was more receptive. Her mum calls her carers “lady helpers” and is happy to accept that.

Tatiana said in her experience as a social worker when referring to someone needing “a little help” rather than needing carers, this approach was usually received more positively. After all, we all need some help sometime and it normalises the situation.

A member gave her example of when she had a stroke and had to have help. She wanted it on her terms rather than waiting for them to come and she wanted to have a sense of control. In contrast, when her husband recently needed help from the Enablement Team, they arrived and said “we are not carers who do things to you, we are here to enable you to do things for yourself”. Generally having carers is often seen as having things done to you.

Member updates [I’ve returned to using the title “carer” – Peter]

When is the right time to consider a care home?

A carer said her mum has paid carers in her sheltered housing and has recently taken a downturn. She asked when do you decide to go to a care home? Who makes the decision?

Another carer said it’s difficult. Her mum wavers from week to week, but she wants to stay at home. She will make a decision when either she can’t cope with the caring role any longer, there is a clinical decision or something happens to prompt the move. As long as her mum is safe the daughter will always have her best interests are at heart.

A husband agreed the decision is very difficult. He considers his wife’s best interests and the risk factors. As long as he feels he can look after her at home he will, as his wife is more content at home. He is also aware of her thoughts and views before the dementia progressed.

The carer who raised the subject said she was concerned because her mum wants to stay in her room and lay on the bed not really doing anything.

Another carer said her mum has a friend who comes to see her 3 times a week (paid) to take her for a walk, have a cup of tea and chat. She asked if her mum was thriving where she is? Janet recommended weighing up the pros and cons. It is worth getting someone into stimulate her. Consider if her mood has changed? Chemical changes cause an in-balance in the brain and she may need antidepressants.

Tatiana asked her to consider how her mum managed in between the carers? Maybe have a discussion with social services and ask for an assessment and discuss all the options. Mum may have lost her confidence.

Sleep

A daughter was concerned about her mum sleeping more – she used to get up early and now she doesn’t. The daughter calls mum to get her up in the morning, otherwise her whole day is out of routine. She asked whether this was reasonable to wake her mum. It was felt it was a good idea to wake her at a reasonable time as otherwise it brought her distress on wondering where the daylight had gone. It also helped with keeping a routine.

Side effect of hospital stays

A wife has had a challenging time with her husband. His dementia is worse every time he comes out of hospital. He is waiting for a heart monitor and his blood pressure is creeping up. The wife is keeping an eye on it.

Keep a diary

A sister caring form a distance, keeps a diary about her brother, the things they discuss and how he is. He can get angry and frustrated as he can’t do the things he used to do. When he has a good week he is really nice.

Next meeting 13th February 2023.

Janet’s information piece

Progress with new Alzheimer’s drug lecanemab

In top-line results from a phase 3 clinical trial called Clarity AD, lecanemab has been shown to slow down the decline in thinking and memory skills in people living with early Alzheimer’s disease by 27%. 

• Lecanemab is a drug that targets amyloid protein build-ups in the brains of people living with Alzheimer’s disease, marking them to be cleared away by the brain’s immune system. 
• Clearing away these amyloid protein build-ups has been long explored as a potential way of slowing down how quickly a person with Alzheimer’s disease’s memory and thinking skills get worse – but clinical trials have struggled to show any beneficial effects on symptoms in the past. 
• This news represents a potentially game-changing step towards treatments that can slow down the progression of Alzheimer’s disease in the UK.

The trails will continue. Careful screening and targeting of suitable people is needed and there are some concerns about side effects. The NHS will await clearance before the treatment is offered to patients.

Member updates

Support

A carer said her dad seems to have perked up. He has been given meds so he doesn’t get up so much in the night. Her Mum has good and bad days – mainly not wanting extra support. She gets irritable with him and it’s now more difficult bathing and dressing him. It’s a lot to come to terms with and it’s taking its toll on her. Her mum is concerned at the idea of getting someone in. She thinks maybe if social services come in they will take him away. She believes it’s her duty to take care of him. Tatiana said social services are there to help and work together to support them both. If something happens to her mum it’s important to have something in place. Try it for a while and make decisions from there. Have an assessment list.

Another carers said she can understand what she’s up against. Her mum isn’t 100% happy with her help, but it’s for her own benefit. Janet said you can make suggestions. Some people don’t make a decision until there’s a crisis. Volcare was recommended by a third carer who finds them excellent.

Motivation

A male carer tries to motivate his wife who is in the early stage of dementia. She has had a sleep monitor and they are waiting for the results.

It’s cold out there

A daughter has had a tricky week with her mum turning off the radiators. She lives alone and is afraid that she will go to prison if she can’t pay the energy bills. It’s like a fridge in her home.

Safeguarding

Another carer said her step-dad has no central heating, only free standing oil heaters with trailing cables. She is trying to influence him to go into assisted living. His sons are prime carers, but it’s a limbo situation. He is very isolated. Bluebird care comes three times a week to prepare a meal, wash up and put the washing on but she doesn’t know about other days. Janet said that if it is a safeguarding issue she should speak to the sons about it. Tatiana suggested discussing options with social services, to speak to Brian and support him in his decisions.

Next meeting 9th January 2023.

Notices

• Janet introduced and spoke about the upcoming Self Care Workshop.

Member updates

New members, old problems

A new member of the group supports her brother in Australia. He has limited support there.

Another new member  cares for her mother who is living in sheltered accommodation in Eltham. Her mother has been independent, but is now worried and scared making excuses not to go to the communal area. She is also not drinking enough. A regular member spoke about his wife and the struggle to keep her hydrated. He suggest suggested fruits, ice cream and jelly. Janet suggested there may be someone in the home that could encourage her mum and to contact Social Services to do an assessment. Janet said her thirst receptors may be affected. People can get to a point where they feel unsafe, thinking “If I stay in can be safe”. Another carer had to go with her mum to the Queen Elizabeth hospital recently as she had become dehydrated.

Here is a link to Good Hydration and how to ensure that someone is not becoming dehydrated. The Dementia UK website has lots more useful information.

Not taking medication

A sister-in-law spoke about the person she cared for refusing to take her meds as she had read the side effects on the leaflet.They are trying to contact Monica Crugel (at the Memory Clinic) for a second opinion. They have an appointment in January. The person with dementia hasn’t taken her meds for about three weeks now. Tatiana said if they were worried about the situation they should ask to speak to the doctor again and put it in writing. Ask for a mental capacity assessment and what needs to be done – copy it all over to Monica. Janet recommended asking for a written summary of the meeting.

Feeling low

The next speaker said her dad is feeling down at the moment and has low energy. He is not responding to the usual things that they do. He doesn’t go out as much.  People do come to see him, but it upsets him and he gets aggressive and says he’s going to bed. Another carer said unexpected guests can unsettle her mum too. She has a friend who comes to see her three times a week. Janet asked if he was on antidepressants as he may need a low dose.

Mobility

The next conversation covered a mum who has mobility issues and how she shakes if she opens the front door. The son said he has good and bad days, but focuses on the good.

Time for a holiday

Finally we were updated about a mum who is in a care home after a lot of problems. Sadly her mum no longer recognises her. The daughter is going on holiday for the first time in four years.

Next meeting 12th December 2022.

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.

Since our last meeting Janet has met Donna Godfrey – Oxleas Advanced Dementia Nurse Specialist. Her role is to offer support for people, living at home, in the latter stages of dementia. You can self refer to her service. Donna attended our last Friendship Group meeting with one of our members.

Janet’s introduction

Janet introduced a discussion on the article on “Vision and perception” in the current edition of the Alzheimer’s Society’s Dementia Together Magazine.

The Society’s factsheets cover the information in more detail:

• Changes in perception 527
• Changes in behaviour 525
• Making your home dementia friendly 819

Group discussion

A husband told the group he has had problems with his wife who experienced distressing hallucinations. She was given medication and the hallucinations stopped.

A daughter said her mum has to have things in certain places – not where the daughter thinks they should be. Now when the new carers come in they say who they are, why they are there and what they are going to do.

A brother said his sister has paranoia, she thinks MI5 are interested in her. She has an appointment at the Memory clinic this week. 

A wife explained her life is very different now to when her husband didn’t have dementia. Several years ago, when she was ill, she worked hard to get back to herself. She has a few hours for herself once a week. Friends are disappearing. She misses the laughter and friendships. She used to be positive, but not any more. She said it’s all about acceptance.

A daughter said some days are better than others and sometimes she feel resentful. Her friend comes up to help her and that’s eases things a little.

Janet suggested members make a list of things they would like to do – cinema, exhibitions etc. and do them.

Covid is still with us

Another daughter noted that all the family had Covid and are recovering. Her dad, who has dementia, coped with it alright. 

Gyda’s reading

Gyda gave us a reading to inspire our thoughts. You can hear more of Gyda’s words of wisdom here.

Tatiana left us with the thought “Everyday may not be good, but there’s something good in every day”.

The Recovery Magazine July edition is here.

Next meeting 8th August 2022.