Carers Group: 12/9/22

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.

Gyda read: “Serenity”:

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.

Carers Group: 8/8/22

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:

Next meeting 12th September 2022.

Carers Group: 11/07/22

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.

Carers Group: 20/06/22

Listen to the new Reflections Carers Support Group advertisement from Maritime Radio:

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We had a busy meeting this evening, with two new members coming for the first time.

Janet’s introduction

Janet discussed a selection of interesting resources relevant to group members:

Dementia Together Magazine

Janet reminded us about the Alzheimer’s Society’s magazine. It is available in hard copy (as pictured below) and in a different format on their web site – see here. The magazine has lots of interesting articles and links to other providers.

Forward with Dementia

Forward with Dementia has the strap-line of “A guide to living with dementia”. Their introduction says “Following a dementia diagnosis, it’s only natural to ask questions. Your diagnosis is the first step in moving forward with dementia. Many people with dementia live full and meaningful lives after diagnosis. On this website, people with dementia have shared their good and bad experiences, so you can learn from them and find useful strategies. This, combined with evidence based research, will help you choose your own path forward with dementia.” The UK version of this service is co-funded by the Alzheimer’s Society. You can read all about their service here.

My Life TV

My Life TV describes itself as a dementia-friendly TV streaming service. “It is the first streaming service with content specifically curated for the cognitive needs of people living with dementia. The choice ranges from specially produced quizzes, singalongs, drawing and chair yoga as well as animal & nature programmes, feelgood content, archive news, popular shows from the 1960s & 1970s and more.” You can find out more about this subscription service on their web site here.

Clothing

Janet also mentioned that The Able Label company sell clothes which “have been designed to make dressing and assisted dressing, easier, quicker and safer“. Her last reference was to Friendly Shoes they claim to “solve more types of footwear challenges than any other shoe technology by making fitted shoes simpler and easier to put on, and more enjoyable to wear“. You might like to have a look at what these companies offer.

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We then moved on to discuss our members topics.

Not acknowledging there is a problem

A mum refuses to agree she has a health problem. She will not discuss anything relating to her dementia, does not go to the Memory Clinic (with the agreement of the doctors) and expects her daughter to take care of any problems. She is very wary about loosing her independence. Her own mother had dementia many years ago. The group discussed their experiences and offered some suggestions. Another daughter looking after her own mother suggested approaching discussions around ” how to make life easier”. Bringing in carers would help – but the mum is very resistant to this. Janet suggested discussing mum’s views with any professionals before they come into the home. Their choice of wording any ability to establish rapport could help to move things forward. Chatting about what might happen in the future and what plans could be put in place would also change the the tone of any discussion, because it is not about making changes now, but looking at issues from a less threatening perspective and leaving control with mum. No one gains if mum becomes upset.

Quick deterioration

Two carers mentioned how their parents had changed in a very short time. One had a fall (playing sport) and her dementia developed very quickly from there. On safety grounds, she had to be moved into a care home.

Another had gone from diagnosis to care home in three months. Again, the move was on safety grounds.

A third speaker said she was waiting for something to go wrong. So far her mum’s dementia had developed steadily since her diagnosis five years ago, but she was still able to cope at home – at the moment.

More than one illness

A brother said he was just about coping since his sister had been diagnosed with a further major illness, in addition to her dementia. Helpfully, the doctors were taking a realistic view on how the sister might be able to cope with different treatments and their side effects. His role, as a carer, had become more complicated and more stressful. He said he was fortunate to have the support of his wonderful wife.

Bringing in carers

A wife was considering how best to introduce carers into the home. The group emphasised the need to find a consistent carer who got on well with the family and especially the person receiving the care. They recognised there would be an initial period when everyone settles in to the new arrangements. The group offered caring organisations they had used: Eleanor Care Bexley, Bluebird Care Greenwich, and Greenwich Volcare. One carer said Greenwich council had given her a list of care providers. Janet recommended The Carers Centre Greenwich for help and advice.

Access to a Care Home

A carer was still having issues with her dad’s care home. Access was mainly limited to week days (difficult for her and her mum, who both work). When a visit could be arranged the visitor needed to be outside the care home building, not very conducive to a relaxed meeting. Tatiana suggested contacting Social Services, who might be able to help directly or at least give some clarity on what should be possible. Things had become more complicated, as another relative had recently become seriously ill.

Avoiding dehydration

A wife was concerned about her husband not drinking enough. He just isn’t interested in drinking. Janet suggested trying Jelly Drops (which are mainly water and sugar free). Janet spoke to a dementia nurse at the Memorial Hospital the following day. She suggested any food which has a high water content, such a salads, fruit etc. She also suggested adding milk and/or cream to mashed potatoes. Being a little creative and considering the liquid content of foods offers options in addition to drinks.

Next meeting 11th July 2022.

Carers Group: 9/05/22

Mental Awareness Week

Janet – read about this year’s topic – loneliness – including 5 steps for well being. You can read the articles that Janet based her talk on here.

Stress

The husband was going out by cab, enabling him to feel independent. His mobility is getting worse, but other things are affected too – it’s a constant star of flux. He contradicts himself all the time. He used to go out not long ago, but is not able to any more. It’s hard getting him in and out of the car and his wife has stopped leaving him on his own. A member questioned how safe is her husband is at home, especially on the stairs. His wife is considering putting the bed downstairs, if he agrees, but he currently says No. He is being included with all the decisions so far. He knows there is an issue with the stairs. Janet said the wife may have to say: if you want to stay here this is what we are going to do. It’s in her best interest. 

A mum has been napping pretty regularly in the afternoons and when she wakes she thinks her daughter is her mum. Now it’s her dad as well. The daughter is getting better at handling it. She is keeping mum busy watering the seeds up and down the path that are not really there. She is planting bedding plants when mum is not looking. Our member has had a lot going on with her mother in law, caring for the last 5 weeks. She feels like she’s running on empty.

Care packages

Another carer asked about changing care packages. They would like to use a private agency, but are concerned about changing, to part private and being able to return to social services at any time. Tatiana recommended  speaking to Social Services about options. Direct payments will give opportunities to look for different agencies. You may read about ‘Personal Budgets’ here.

Making decisions

A popular member of our Friendship Group has had a medical procedure. She will need further treatment but, the moment, she doesn’t want it. She will have a consultation to explain it all to her. Janet asked what the reason not to have the treatment – her brother said she has been watching too much on-line and she has a massive distrust of people in authority. Janet suggested she talked to the specialist nurse and raise her concerns.

Having a break

A carer has been able to have a few days in Wales and will be going to visit his 98 year old mum in Cornwall.

Tidiness

A step-father is alright. He can be rational and irrational about things. He took himself to have a procedure on his eye. He said his eyes have improved. He has been taking things into the garden constantly to keep his step-daughter from telling him off for being untidy. So now she’s not going to tell him when she’s going round.

A mum is still decluttering, but actually making things worse – she can’t find things!

Support

Another carer spoke about a friend’s mother who needs support.  But won’t accept  and is managing everything herself. Reading and joining the discussions on the Alzheimer’s Society’s “Talking Point” can be a helpful step in managing your expectations and realising the stress that builds when you are in a caring role.

The MIND cafe is open Thursday 10.00 – 12.00 the first Thursday in the month. Read more here.

There is a Songhaven concert on Sunday May 15th  at All Saints Church Woolwich. Full information here.

Next meeting 13th June 2022.

Carers Group: 11/04/22

Not so Strong and Steady

A husband was going to the Strong and Steady class which he was enjoying. Last week his wife was told he could no longer attend, as they couldn’t ensure his safety at the group.  The Strong and Steady class staff were going to call tomorrow to discuss the issues. Janet suggested the wife say that she has her own health concerns because what has happened. Tatiana said: Ask what was the risk? What happened exactly? What is the element that’s changed? Janet added: Ask what did they observe? Would they consider if she is at risk having him at home – and that will give her some idea of what to do. She can then make a list of pros and cons for downstairs to help make a balanced decision. 

The husband was going out by cab, enabling him to feel independent. His mobility is getting worse, but other things are affected too – it’s a constant star of flux. He contradicts himself all the time. He used to go out not long ago, but is not able to any more. It’s hard getting him in and out of the car and his wife has stopped leaving him on his own. A member questioned how safe is her husband is at home, especially on the stairs. His wife is considering putting the bed downstairs, if he agrees, but he currently says No. He is being included with all the decisions so far. He knows there is an issue with the stairs. Janet said the wife may have to say: if you want to stay here this is what we are going to do. It’s in her best interest. 

Another carer said stairs are an area of concern for his wife too. She will stop and then not move. She is deteriorating and very cautious, weak and not in touch with what’s going on. 

A daughter has put her mum’s bed downstairs so she gets used to it over a few months. She now calls it her new bedroom. They are slowly moving the house around basing decisions on mum’s safety.

Unstable

Another carer’s husband collapsed in the bathroom last Sunday. He kept trying to stand up and he was all wobbly. She rang the GP in the morning and is doing a diary of his blood pressure, as it was very high. He is on tablets, but they may have to be increased. He gets up about four times a night. It’s very frightening. If he really hurt himself, the wife couldn’t pick him up. She is waiting for the doctor to get back to her to have further discussion. 

Talking Point article “Love Lies”

Janet started the discussion with an article from the Alzheimer’s Society (see here).

A daughter said it is kinder for her to fib to mum, this is how she deal with her. A brother considers which is the greater good for his sister. He says to her… maybe we can think about it later, or, not everyone thinks the same. Janet noted that carers have grown so much having to adapt and look after themselves. 

Care home visits

Another daughter has seen her father, in his care home, a few times during the week but not at weekends. All the visits are still in the conservatory. Her dad falls asleep every time, and there hasn’t been a change in about 18 months. Janet suggested she ask if he has more alert times during the day. She could visit then, engage with him and get most out of the visit.

Next meeting 9th May 2022.

Carers Group: 21/03/22

Confusion in a care home

A carer had a question about care homes and respite. She was concerned about her mum losing her clothes and them being replaced with someone else’s. She also asked if the group thought her mum should see a psychiatrist due to her delirium. Members suggested that mum’s name be put inside all her clothing and there would be a good chance she will get them back. Mistakes could occur. It is inevitable that people go in the room and her mum may go in some one’s room. People will go in and out of rooms because they are disoriented. They don’t recognise their own belongings. Staff do the best and it can be difficult to keep track of it. Tatiana – said if it’s causing distress to the mum she would expect the home to look into it. The carer said her mum is talking to herself and can become aggressive and didn’t recognise her daughter. Janet suspects mum doesn’t recognise her daughter’s house after three years. Janet gave the carer the post diagnostic specialist nurse information and contact Mind for a referral for her mum.

Not drinking

A mum was not drinking. Another carer said he has tried everything to get his wife to drink – special straws didn’t work, ice cream, jelly drops maybe. Janet – the brain tells us to drink but if that part of the brain isn’t working on more responsive days get the fluids in. Dementia is unpredictable… things just happen. The daughter is worried her mum will end up on a drip like last time. Janet suggested contacting Kate Hudson, the dementia nurse at QE.

Living alone

Looking after someone who lives alone is difficult. This subject is hoarding rubbish. The family carers have installed a Ring doorbell, as a man had knocked asking for money for a job done on the roof. Fortunately, no money was handed over any money and the police were called. They came round and praised him for his action.

Weakening

A wife is much weaker than she as and is walking with a stoop. She has gentle falls and sits down on a step and can’t get up. Her husband has emailed the Memory Clinic and has an appointment

More confusion

A brother was feeling stressed about his sister before the meeting. She had sent messages telling everyone she was having an operation, but she is just having test results. The rest of the family did not know this and thought the worst. She is increasingly forgetful. He might get a Ring doorbell for peace of mind. He will try to persuade her and get his wife working on the sister. They did have a nice day for the brother’s birthday.

Perception

A dad has perception issues – auditory perception too. He will respond, but doesn’t turn to the sound, but will carry on the conversation. He doesn’t sit exactly on a chair, but on the edge or arm rest. Going through a doorway he will go stepping up rather than walk through. He talks to himself and other people that only he can see. He had an episode last week becoming agitated and hitting himself which he hasn’t done for about a year. His only medication is sleeping tablets and eye drops. Janet – asked if he was depressed. The daughter said he sinks into a mood, but not all the time. He will work his way through it. He asks what is happening to him and he maybe aware of this dragging him down. Janet suggested keep an eye on how this develops.

How to walk

A husband has ongoing issues using his walker. He told his nurse that he didn’t like it, as it labels him. He says he’s ok with a stick. He assumes his wife will sort out any problems. He is going to a Strong and Steady class. It was suggested to get a health professional to tell him “if you have a Walker then use it”. He might take more notice of a professional. His ability varies all the time. Tiredness comes into it and is not consistent and unpredictable.

Ring ring

You can find out more about Ring doorbells here. The link is for information only, there are other similar options and we do not recommend any particular product.

Next meeting 11th April 2022.

Carers Group: 14/02/22

Valentine’s Day

Introduction

Janet’s introduction was in response to the increasing numbers in the group and the limited time for discussion. In future, at the beginning of the meeting, Janet will ask if anyone has anything specific to bring up, or has any questions. These items will be discussed, then she will go round for updates. If time runs out Janet will make a list for next time.

What I wish people knew about dementia

Janet talked about Wendy Mitchell‘s second book following on from ‘Somebody I used to know’.

  • In the introduction she talks about how dementia affects the senses, emotions and communication.
  • When planning meals she says it is important to consider the temperature of food, hot meals can be difficult and challenging.
  • Chewing food becomes laborious and some one with dementia may forget to chew enough.
  • Using a knife and fork – two motor skills at a time become hard.
  • Losing sense of taste.
  • Eating the same meals over and over again – you may not remember what to have eaten but you may remember what you like.
  • These things can be difficult for those who don’t have dementia and the carers – try not to take it personally.

The group discussed their experiences:

One lady eats food that has gone-off, soft foods in general and raw potato, chillies, whole lemons and oranges. Her husband wondered if she enjoyed the texture. Janet suggested that carers need to become become detectives. Sometimes things work and sometimes they don’t. It’s important to get them to eat something nutritious and a variety of foods is important. Janet added that in working out ways to succeed you have to be canny and clever.

Another carer has been buying meals for his sister from Tesco, which she now gone off. So, he got M&S meals. She says rice makes her choke and she will only drink almond milk now. She is losing her sense of taste and is becoming very faddy. She also has a ‘thing’ about germs. Janet added that the book said the china that is being used can make a difference. The colour of plates is important – mashed potatoes on white plates are tricky, there needs to be a contrast between the food and the plate. 

A wife said that her husband enjoys his foods and eats obsessively. Even if he’s had a meal he will go and make a sandwich. He did have a choking incident in which she had to put her finger down his throat to release the piece of meat. She tried chopping up his food but he hated that so she has stopped doing it.

Cruising

Following up on a previous discussion on a husband’s love of going on cruises: Janet had suggested the wife contact SAGA to discuss how they could help. They had a wonderful response back and have been invited to go on one of their ships for a tour and lunch, possibly in the summer. The husband’s face had lit up and it was a joyous moment. Hopefully, it will be in July when they celebrate their silver wedding anniversary.

Mobility

A wife spoke about her husband’s mobility. He is eager to dance or hold on to each other at Reflections. He has an air of helplessness even when sitting down. Recently when she was out he went on a bus – no stick, and went to the shop. She wondered – should she let him go out by himself? Is she being over protective? He has started a mobility class (a group of 3). Maybe this will help. Janet suggested maybe the wife could take her trolley and go with him or discreetly follow!

Issues

A sister wants to change the her doctor’s practice. She had seen a locum, who need to have a prescription counter signed, so went out of the room. She got it in her head that all the doctors leave her alone in the room. Her family have managed to get that all sorted out. The sister wants to maintain her independence, but this puts strain on her family: she visits on the wrong day; she had an argument in a shop over a cash/debit card; and she loses or forgets passwords.

Her sister-in-law said they are asking for her to have a referral to the Memory Clinic. She is not getting up until midday, then taking her medication all at the same time. She doesn’t recognise the time or remember the day of the week. She feels she ruder: she says what she thinks – her filter isn’t working properly. She says she gets memory fog and she is aware she’s not right. These are things she will be able to talk about this when she has her review.

Question

We had a question sent in by a carer who could not attend this evening. She is going away with her sons in March and is finding it difficult to find help for her mum. She thinks it’s best to keep her mum at home and have someone to supervise. A carer suggested Bluebird Bexley agency. He will send some links. He said it’s more about the people who work for them not the agency. He was fortunate to find the right person for his wife. Janet- suggested the Miss Mardle agency.

Reflection piece

Gyda read – “Our lives are full of fragments“.

Next meeting 21st March 2022.

Carers Group: 17/01/22

A New Year

The Carers Centre & Memory Clinic

Janet told the group that The Greenwich Carers Centre is closed, including the cafe. You can phone for support. The Memory Clinic is also closed. There are no face to face appointments. You can get in touch by phone, but do accept delays. There may be Zoom meetings and, in exceptional circumstances, a home visit.

Where is mum?

While a carer was unwell over Christmas time her mum had some odd moments and did some odd things. She kept crossing over the road looking for her mum.  Fortunately, the neighbours know the situation and gave help. Also, she is phoning the daughter and asking where her mum is. The daughter asked the group for advice on how to answer and soften the blow.

Janet said the mum may feel unsettled and her mum means security and stability. Ask her what do you want to talk to your mum about?

The group agreed any comments about the mum would need to be handled carefully. It’s about balance. Avoid lying and steer the conversation somewhere else. Speak to the neighbours about deflection conversations about mum. 

Long separations

Another carer hasn’t seen her dad due to COVID and he has a cold at the moment.

Janet advised her to speak to the social worker about her circumstances and visiting. The daughter has some time off in February and  hopes to sort things out.

How to choose what is best

A carer explained that her husband has had dementia for the last four and a half years. The last few months he became bad tempered and suspicious, so he went into respite. He spent several weeks in hospital and then could not come home. He has been in interim care for the last few weeks. He now thinks it’s his home. His wife misses him dreadfully and grieves for the 60 years they’ve had together. It’s very painful and when her heart rules her head, she wants him home. They have four children with differing views on what to do. She now feels she is battling on her own.

The group discussed the challenges of trying to look after the husband at home. There would be a need for day and night carers. The husband would need a bed downstairs, but the bathroom is upstairs. The practical issues were great, but the group emphasised the impact on the carer and the rest of the family. They suggested writing down the pros and cons to yourself and to her husband. Thinking about of her health now and before – how much can she cope with?

Germs and homes

A brother explained his sister has developed a fixation on gems and getting ill. She had toothache and her face became swollen, it was eventually sorted. Her brother is going to buy M&S dinners as she says she’s not eating. She has a lovey flat now, but wants to move back to her old home (which is no longer there). She even signed up for a flat which the brother had to sort out. 

Cruising

A husband likes cruising and it has become an obsession, looking at brochures etc. But several times he has booked a cruise on his own and didn’t tell his wife. She has had to cancel and inform the company of his dementia. She feels awful but knows they couldn’t do a cruise. He wouldn’t be safe. She doesn’t know if he understands. She hates being the policeman and it must be horrible for him.

Group suggestions were: getting out old cruise photos and appropriate meals; tell him you’ve booked one for the end of the years and maybe he’ll forget. Arrange a visit to a cruise ship while in dock for a day’s visit. 

Another carer said her dad had an obsession with a singer and booked a trip to Spain to see him. His son had a long conversation with him and eventually he agreed he would need to stick to watching his videos of the singer. The dad sulked for a couple of months, but it worked. 

Next meeting 14th February 2022.

Carers Group: 20/12/21

Our last meeting of 2021!

Saying “no”

Our first speaker has had a tough few weeks. Her son is away at the moment, so she has been caring for her mother in law too – organising everything and getting ready for Christmas. She feels like it’s ground hog day. Her Mum is ok and oblivious to everything. Janet said it’s easy to get wrapped up in what you are doing and she needs to say no to people and recognise boundaries and priorities her time. The carer feels like she needs a few days away. 

Chrismas care home visits

Our youngest carer saw her dad the day after her mum’s birthday celebration. She said he had no eye contact and wasn’t really present. She read to him about Russian missiles and he fell asleep. She has been told there will be visiting restrictions over Christmas period due to Covid and staffing problems. Janet said care homes can forget it is the person’s home. She advised working with the local council to explain the situation and work with the authority funding the placement. Tatiana suggested going via social services, ask if they have had a review and share her concerns. The carer feels like it a constant battle all the time to see her dad. She said it may help for requests for change to come from professionals rather than a family member

Confusion

A father-in law has become slow to respond and ‘woolly’. He takes time to come to. The carers were going to report that he was getting out of control with his meds. He has been “discombobulating” his phones. He didn’t respond when she called him a few weeks ago. He is chaotic at times. She is keeping an eye on him and will take him out for a Xmas meal. He is a hoarder and lives in chaos. Her resources are drained and she needs to have a conversation with his son. Janet said his safety is concerning (he is a member of the Friendship Group).

Plan for the future

A husband said his wife had been gently declining, but there is now a faster decline. She has less energy and difficulty standing and stepping. They go for short walks and she had been relatively stable. He said that she will look at the stairs and can’t work out what to do. She is sleeping more in the day and more at night when she used to be awake. Janet asked how do he gets her up the stairs? He said it’s getting harder and she risks falling. Janet advised thinking about planning ahead and how to manage at home. He said the consultant has been quite helpful. The nurse who comes round didn’t come back with ideas. He is taking each month at a time. He hasn’t got any respite time planned at the moment. His Mum is 97 and is in hospital at the moment. He is hoping to visit her in the New Year.

Dad ok, mum not so

A daughter said her Mum has mixed dementia. Progress was quite gentle until 4 months ago, then she began sleeping from 1 until 4 in the afternoon and it frightened her – she has now accepted it. The carers come to help with meds. Mum lives in a retirement close. She is having difficulty with cooking and has support with this. She now can’t use the phone, turn on the TV, the washing machine, or the cooker. They have a WhatsApp group to keep an eye on Mum. The 3 sisters are now struggling and need some calm – it’s chaotic. 2 weeks ago her Mum was suddenly confused. Subsequently this involved hospital visits and consultations with GP. The result was a diagnosis of Lewy Body symptoms and Parkinson’s. The medication now need to be reviewed. The carer is distressed because her Mum is distressed. The family are looking at private care as her Mum needs care through the night. Janet – mentioned Telecare to add a door sensor to the existing service (see the Greenwich Telecare information here). A family member can record  an appropriate message. It’s about managing risks. Mum likes to have a handbag, but the daughter is concerned about her carrying valuables. Janet suggested giving her the handbag, as it’s important to Mum, even if it is empty. 

A new habit

We heard about a dad. He has developed a new habit. He closes his eyes and won’t talk to you. He’s not doing the filing as much as he used to but latches onto things like bank statements. It was suggests that it could be ‘sun downing’ as dementia can be affected by lack of light and the shorter day light.

Are you ok?

Finally, we were told abut an old member of the Friendship Group. His memory is worse. He recognises his daughter but not her name. His wife said she has off days but she is ok. 

We hope you have a good Christmas and send best wishes for the New Year.

Next meeting 17th January 2022.