Carers Group: 10/1/23

Janet’s information piece

We discussed the power of words and how group members see their role.

Future meetings

Janet asked group members to contact her if they would be interested in the specialist dementia nurse coming to the group to talk.

Reading

Janet suggested – Why had nobody told me this before by Dr Julie Smith.

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.

Gyda read: “Each Moment is Precious” by Patricia A Fleming

Next meeting 13th February 2023.

Carers Group: 12/12/22

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.

Gyda read: “A partridge in a pear tree”:

Next meeting 9th January 2023.

Carers Group: 21/11/22

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.

Carers Group: 3/10/22

Notices

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).

Gyda read: “Love soothes all ruffles”:

You might empathise with the author of the popular blog:

Midsummer Madness by Georgina Grant

Next meeting 14th November 2022.

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.