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.

Carers Group: 8/11/21

This evening we found those cared for were doing reasonably well, but the carers were feeling somewhat worn down.

Mobility issues

If you are a large chap who likes to walk, it is difficult to accept that you are no longer very stable on your feet, you get tired quickly and your wife has a very difficult job to do if you fall down. The wife has received help from a gerontologist (you can read more about gerontology here). Unfortunately, the GP said they couldn’t do anything. The wife is also benefiting from having a carer come in so that she can have a break and do some things for herself.

Recovering from surgery

One of our regulars at this group gave us some feedback on a regular at out Friendship Group. The carer reported that, after a some surgery our group member was back on this feet (and he was dancing the day after at our Friendship Group). He tends to be unstable walking about, but when he had a purpose to his walk, or dance, he became reassuringly stable.

Falling

More on stability: A usually stable wife had recently fallen out of bed and getting her back up was almost impossible. It appears to have been a passing infection, as she has now returned to normal stability. The husband had recently had the norovirus and things she might have had a mild form.

Getting the blame (again)

Mum had just celebrated her 90th birthday, but she blamed her daughter for getting this wrong, as she thought she was only 89. The daughter likes to ensure her mum is warm in her home, but mum complains about the waste of money and turns the heating down as low as she can. Mum likes to prepare meals, often several at a time. This means that the daughter has to throw away unused food, which the mum complains about. The daughter likes to give her mum choice in what she eats, but pointed out mum always used to eat the same meals on each day of the week – the group suggested returning to this format. The daughter is spending a lot of time in the greenhouse talking to the plants.

Dad ok, mum not so

We always say carers need to look after themselves, otherwise they will become unable to care for anyone else. Easy to say, but much harder to see when you are approaching the point where you can no longer cope. The mum, in this case, has moved to a point where she no longer says she doesn’t need help, but not quite to accepting she does need help.

Pictures

A care told us that when she visited her mum at her care home during covid (with her outside and mum on the other side of a window) she took picture books. Mum seemed interested in the familiar pictures, even though she couldn’t say what they were, there was still a positive reaction.

Frustration

Even trained people can get frustrated with their loved ones. At home you can react differently to being in a work environment. If you have dementia you might think being tidy would be a help, but not when you can’t find the things that have been put away.

Using bank cards.

HSBC have been working with the Alzheimer’s Society to develop a card that is easier to use for people with dementia and/or who have sight problems. You can read more here. One of our group has one of these for her day (although no one has used it yet.

Next meeting 13th December

Carers Group: 11/10/21

The group was particularly busy this evening.

Being naughty

A carer is said she is always in trouble with her mum. She is accused of breaking things and hiding others. A member suggested it sounded just like being treated like a naughty child. This struck a chord. The issue was that mum had started putting things in unusual places, then complaining they weren’t in their usual place. This is a new phase – the carer said she had had enough by 4pm each day. She then admitted she used to be a naughty girl…

To visit or not to visit

We were told a carer’s dad was in a care home. He is bed-bound and has been unable to engage with others since November. His wife is not sure if she wished to continue visiting him, it is too upsetting. The mum has also recently lost a friend. The daughter has not ben able to visit him. Another carer said she could empathise to a degree – she had lost her husband, her mum had received a diagnosis of dementia and she found herself also caring for her mother-in-law – all too overwhelming and she had finally agreed to ask for help with her own mental resilience.

Janet suggested the first carer’s mum might like to join this group. A member said she had found joining us had been useful, even if she sometimes just listened to what others were saying.

Falling

A husband had fallen twice recently. His wife was now worried that if she went out something might happen – at the same time, she realised she needed a break and a little time to herself. They both have “Red buttons”, but he might forget to us it [you can find out more about Greenwich Telecare Service here]. Members suggested engaging neighbours to keep an eye on when the husband might pop out. This had worked for another carer, who was confident that her local support network would call her if they thought there was a problem.

Getting the blame

What do you do if your sister blames you for things that go wrong, or thinks you have done something you shouldn’t? The carer said he continue to do his best, but his own poor health was affecting his ability to cope. He tried to watch for “triggers” that would cause his sister to start react badly – it was tough.

Hearing voices

A father-in-law was continuing to see and attempt to engage with his hallucinations. He said he was not concerned about apparently strange people people appearing and talking to him. His mental health was getting worse and she felt it would soon be time to consider looking for a care home.

Physiotherapy

People with several health conditions can find it difficult to find the support they need. A carer said his dad required help to maintain some mobility, but a selection of physiotherapists had said his case was not appropriate to them, or was not their area of work. The carer was currently engaged in providing support via a physiotherapist on Zoom. He would continue to fight to find suitable support for his dad.

Keeping things neat and tidy

A dad had returned to his habit of putting things in his files. This made him happy and didn’t cause any problems – good news.

Missing letters

Letter from “professionals” sometimes go astray. A carer had decided that she needed to be much more assertive to ensure that she had all the copied of letters that had been sent to her mum.

Next meeting 8th November

Carers Group: 13/09/21

The group was very busy this evening.

Private funding for a care

A carer is trying to find day care and respite for her mother who she is worried about, because of immigration status. She will pay for private care, but is finding it difficult to find anywhere suitable. Suggestions were: MIND/ Greenwich Carers Centre and Care Homes UK. The Alzheimer’s Society’s Help Line “Talking Point” helps people with dementia all over the world
Another carer wishes she had gone to social services earlier, not private. It is wise to involve social services, but have a short list too. Have a consultations with social services.
Tatiana said, when you speak to social services tell them about the homes you are interested in and ask about your finances, if they fall below the threshold and what happens?

NHS dealing with their backlog

A carer’s step father (aged 85) is going in for a hernia operation tomorrow. It was cancelled before in lockdown. She said he is getting a bit unsteady walking about, but he enjoyed the dancing at Reflections last week!

Confusion

A familiar member of the Reflections group hadn’t been seen recently by her brother and sister-in-law as they have been on holiday. She has been confused using her microwave, as it has an oven in it – so she cooked a plastic dish and melted the little ring thing that holds the plate. She has to remember the right function! (an interesting conundrum).
She said she won’t complete the attendance allowance form. Janet reminded the carer that they have  LPA so they can complete it. She has it in her head that lots of people are moving and she doesn’t want to be left on her own, so she phoned the council and they said she could move, As her brother has LPA he can phone the council and explain her needs.
She is independent at the moment but on bad days she gets confused. Her brother brings her ready meals. She now has a Fitbit which she is learning to use.

Planning ahead

A carer has been away and her mum was well cared for while she was away. She says mum has had a dip over the last few months. The daughter has been planning ahead for her mum investigating various care homes. She is concerned about the finances when money runs out and what happens between different boroughs. Who picks up the funding? Tatiana said the different boroughs would have to decide. Another carer said quote the care act if boroughs are in disagreement.

Visiting those cared for

A new carer said her father is in Worthing and she has only seen him once. The home has strict restrictions still and are not flexible on visiting her dad. She is finding the restrictions very difficult. 

Another is trying to look after someone in a high dependancy ward. She is able to visit three times a week.

Stable-ish

A dad is relatively stable at home at the moment. The family haven’t heard from cardiology team, after a considerable wait. Dad has issues with hygiene – he forgets what he has to do. 

Practical considerations

At an easy stage it helps to try and sort out practical things. The Carers Centre is going to look at the attendance allowance and help to gather up evidence. The carer is finding it distressing as its all seems to be negative.
The group advised her to look for the good, what can be done. Once the form has been filled in it’s done. It will help to make life easier. The wife says the rational and emotional side of doing all the paper work is difficult and hard to do. She is trying to see the funny side of some situations. She gets Fridays to see friends it she needs something else to do.

Another carer remembers having get the points for attendance allowance. Theirs was off the scale! 
He has been to Orkney for 10 days while his wife had a live in carer. She didn’t realise he’d been away. She gets agitated but all is fine. 

The Queen Elizabeth and Lewisham hospitals

Janet informed the group of the Dementia nurse (Kate Hudson) at QE. She’s there Monday – Friday, 8.30–5.30. She will go and see the dementia person if you contact her. 


Also if you need to go to hospital A&E you can dial NHS 111 and they will book an appointment for you. QE and Lewisham.

Next meeting 11th October

Carers Group: 9/08/21

We were back on Zoom again this evening. The group discussed developments in their caring roles over the last month. We had carers who had come to our first Friendship Group back at Shrewsbury House soon 3rd August and were keen to discuss the experience.

Increased Anxiety

The pandemic has forced many of us to spend a lot of time at home with very little contact with other people. We had the time to become content with that. Now we have the opportunity to go out and mix more, the prospect can be daunting.

A carer said her mum had been out twice recently. Before both outings, she was very reluctant to go. She made many excuses and said she expected to be unwell on the days. Following some gentle encouragement mum agreed to go. At our Friendship Group, she dance and joined in with the activities. She said she enjoyed herself. At the other outing, she enjoyed some food (actually, lots of food and asked for a doggie back to take some away). A couple of very successful days, but needing a bit of encouragement to set in motion.

Getting fro A to B

Another member said the person she cared for had been very keen to come to our Friendship Group. He can be rather confused, but very stubborn. He said he could find his way yo Shrewsbury House (he had been there many times before). He aimed to arrive at 12, eat something in the cafe and be ready for our group at 1pm. Unfortunately, he got a bit lost and arrived at 2:15 pm. He had a good time at the group, but agreed using a taxi would be a good idea in future.

15 visits to hospital

We have missed a couple from our Friendship Group who couldn’t use Zoom. We had an update on developments this evening. The carer told us that her husband was still a cheerful man. Sadly, following a fall, his condition had worsened and he was now bed ridden. He had needed 15 visits to the hospital. The support from the District Nurse had be good, but time limited. Now suitable carer support was difficult to find. The group made some suggestions from carer organisations they had used. Volcare was providing some support, which enabled our member to have shot breaks from constant caring duties.

Time for a break

A speaker was pleased to say that he was due to have another trip away, thanks to the very good live-in carer from Bluebird. His wife had been in something of a decline, but had stabilised recently.

Getting professional help for the carer

We are very pleased that one member of the group has chosen to speak more about her own therapy. She reflected on some of the points I brought up in my ‘7 Tips’ session (see below). She quoted “We become what we think about all day long”, emphasising that negative-speak reinforces our negative opinions. She had taken inspiration from the work of Wayne Dyer.

Reluctant visitor

We returned to the enjoyment another member had found with their loved one at our Friendship Group. Again there had been reluctance to come, but shortly after our entertainer started to play, they were up dancing. Confusion and paranoia continued to feature and the carer’s own health had deteriorated. Fortunately, family support was keeping things moving forward.

His version of normal

We were please on the improvement of the dad of a carer. However, his blackouts were still a mystery. The memory Clinic had discharged him, as they could not find out what was wrong and he was now looking for further support from his GP.

New

A new meter said how helpful she had found listening to the discussions and people’s experiences and frustrations. She would be back (she and her husband also enjoyed the Friendship Group).

Seven tips to reverse a bad day – Peter’s presentation

Everyone has bad days. While bad days are common for all of us, you may not have thought about the ramifications that your bad day can have on yourself and others you run into. The tips on how to reverse a bad day are here.

Postscript

We had the most unusual apology yet from someone who didn’t make our meeting this evening – they were in prison! Fortunately, they work there and were let out later.

Next meeting 13th September

Carers Group: 12/07/21

We asked the group if the wished to stay on Zoom, given the ending of covid restrictions on the 19th July. Our members said they enjoyed the convenience of Zoom and were happy to keep these meetings online.

[I missed this meeting, but we had the delightful Gyda taking notes – hence the improvement in quality.]

A new member

We welcomed a new member to the group. She was only 20 when her dad was diagnosed (age 63) with Alzheimer’s. There is no experience of dementia in the family. At first it was thought to be depression. The family looked after him for 2 years at home, but he very quickly deteriorated and has been in a home for two and a half years.

[There can be rapid deterioration in young onset before age 65. Sometimes doctors look for depression rather than dementia. The whole family need to be involved. You can read more about young/early onset dementia here].

Janet asked – what did you notice? She said her dad was a clever man, but he began to forget things – her age for example. The bizarre behaviour came on later – this included taking his clothes off and getting wound up by things. He became aggressive and angry.

He hasn’t spoken since COVID and he doesn’t respond anymore. Janet recommend Playlist for Life (PfL) to provokes memories. There is more about PfL here.

Control is not an option

Another member said her mum is up and down and everything can change in 10 minutes. The daughter likes to be in control and that’s a challenge for her mum. Our member and the others attending recognised that trying to “control” someone with dementia is not a realistic option (however much you might want to). She was away for her birthday at the weekend and her son dealt with mum. She is very impressed with his management, keeping her calm. She doesn’t want to overload him as he is in a relationship and also cares for another relative.

Mum gets into a panic over things like bills, but likes the children and cards from friends, even though they have to find pictures of who they are. 

The daughter has Lasting Power of attorney (LPA) and is going to register all the official stuff to her address, so mum just gets the nice bits. 

She is much calmer at the moment- she is working with MIND on a 10 week course. She self referred. She is already looking forward, thinking to find solutions. She will tell the group useful things from the course at later meetings.

Going out and coming home

A long standing member says she is muddling along. Her step father lives in her mum’s house. Her mum has passed away. He has been able to get on a bus to go to Greenwich. The daughter gave him a ticket for the Curry Sark. He went on his own and had a good day. She goes round to see how he’s getting on. He is going for a pre-op check for a postponed hernia op next Monday. She is concerned about who will help him aft the op. His bed and a commode will have to be downstairs and his house is already full of stuff! There will have to be a discussion about the support needed carers etc. She was advised to alert the ward for a safe discharge

Another story of early onset

The male attendee this evening said his wife had memory issues before the diagnosis which took a long time by different specialists. The support was very poor. Now his wife’s language is poor and she can’t communicate, some days are better than others

They have a live in carer and she is fine with that. They have some additional support, which enables him to have some time for himself. He has had a few breaks away. He said – finding the right carer is important – you have to be comfortable with them and they have to be able to stimulate the dementia patient.

He is ok at the moment. There was no recognition from her when he came back from being away. 

Working late again

Our regular 8pm joiner (we run a flexible meeting) said her dad had another episode and was down on the ground and unresponsive for 15 minutes. He was taken to Queen Elizabeth hospital on Friday. There was a lack of communication between departments. Her mum stayed with him all the time. On Sunday he became over stimulated (noise and lights) and he exploded hitting Mum and nurses. The daughter could her it on her phone, he was using a pillow to hit out. He was given a sedative. It was very traumatic for her mum. He was in a depressive state after that for days. The Doctors don’t know why it’s happening.

They are waiting for a letter from the Memory Clinic. They may discharge him as there is nothing more they can do. 

He was weaker when he came home, particularly his balance and walking. He needs more care getting in an out of the bath and going to the bathroom He’s regaining strength, but not back to how he was before.

Social services contacted mum to say they could help, but mum doesn’t want that yet. She wants to do it for him. The daughter said mum is exhausted after the hospital time. Lots of stress. He has more happy moments after being in hospital, but you can’t mention hospital. 

Janet advised planning gradually for the responsibility of it all, rather than wait for a crisis to happen. Sensitively drift the idea of support to her mum. Family carers need support too, thinking before it happens. Asking mum – what’s your thinking? What would make you want to change something? Planning for help and support would be a good thing. 

Tatiana said even if mum says she would like an assessment it takes time. He would not be “taken away”. Social Services have to work with the family to explore all options and they try to keep people at home as long as possible. Care home cost more money, it takes weeks to do all this and there is a waiting list. If she is afraid of the outcome it would be better to plan ahead.

A carer needs to be aware that promises they make early on can be unachievable down the line. It the carer setting themselves up for guilt? What if they can’t look after their loved one? Realistically, they can say – I will do the best I can, but I may not be able to do this untill the end.

Long covid and caring

Our member who has had covid said he is feeling tired. He’s been chasing his sister’s pension and it is now going through. She came round to watch the football, but went on the computer with the volume up. He said she knows something is wrong, but not really what it is. She wasn’t eating properly, so they bought some frozen meals, so now she eating more regularly. His wife still has to make a distraction to check the fridge. The sister had a roast dinner with them, but said she was still hungry! They have contacted Nikki from BLG MIND and she says she’s ok with that.

Supporting someone with dementia is a learning experience for yourself. 

Carers Group: 14/06/21

A very warm evening. We managed a chat, without getting overheated.

A continuing caring role

A carer returned to the group after a short break. Sadly, her mother had passed away – now she was spending more time caring for her step-dad. As sometimes happens, she has taking on a role that might have been shared with other close relatives. For their own reasons those relatives are not playing a very active caring role. Our member had arranged a trip out for her step dad and was hoping it all went well.

Who takes responsibility?

In a continuing saga, a carer told us the care home she was dealing with would tell her that action had been taken, when it had not. The person she cares for had seemed unwell, eventually the care home reported that she had been taken to the local hospital. The hospital then said that they had found several things wrong with the person in care. Why the care home did not take action earlier is unclear.

When the carer visited the hospital, she noticed that several rings had gone missing. In due course she discovered that the care home had removed them before the trip to the hospital, but not mentioned this during several discussions.

Janet and Tatiana advised our member to ask the home when they had noticed the health issues. The hospital said they had been there for some time. The carer should speak to the care home manager and, if not happy, speak to the funding council.

Food and funding

Our member who cares for someone living on their own, is concerned that she is not preparing and eating meals. When visiting our member she eats heartily, but there is little evidence of food in her home. He intend to monitor the situation more closely and suggest options for simple meal – such as frozen dinners and having food delivered (such as Wiltshire Farm Foods). He may also consider suggesting having some visiting carers.

He has also found that a council benefit has stopped. As he has Lasting Power of Attorney, he is looking at the best way to manage correspondence, without upsetting the person he cares for.

What is true?

A carer visits her husband in a care home. He sits in a chair, is unresponsive and very sleepy. To get him standing takes a long tome and several people to help. The care home say that he is able to do things for himself and is eating. He now has a problem with his foot which is getting progressively worse. In the short time he has been in the care home he has required several visits to hospital. He was recently taken to hospital for a blood test (why couldn’t this be done in the home?)

Tatiana recommended that our carer speak to the podiatrist and arrange a meeting with the care home manager. Our carer should have been involved in monthly care plan reviews (she had not).

Visits to the loo

What happens when you forget what to do when you visit the toilet? A carer said he would accompany his wife to the loo 20-30 time a day, with varying success. He said he was managing, but was a little concerned as he had booked a couple of short (much needed) breaks for himself. There would be a live-in carer, but they would find the loo regime a challenge.

Dementia treatments

The latest report on our member’s dad who has Dementia with Lewy Bodies is quite positive. The memory clinic has (after a year’s wait) prescribed some medication and are looking to up the dosage as he becomes used to it. His mood has also improved, as he is now able to go and visit family members.

The “bad guy”

When you are living with someone you care for, you are sometimes the subject of their anger/mood swings. Our member’s mum has taken to having a nap in the afternoon, when she wakes-up, she is confused. This confusing now often leads to accusations of “wrong doing”. For example – mum tend to have a well stocked fridge and freezer, but some items will become out of date. The daughter has to carefully take these away and dispose of them without mum becoming upset that food is being taken.

Our member reports that she is managing quite well and this has been helped by continuing counselling and Cognative Behavioural Therapy (CBT).

Forgetting to drink

Dehydration can cause many problems. Our carer reported that her husband made his own drinks and had drinks provided for him, however, he often forgot to drink them. Dehydration had caused issues which led to hospitalisation in the past and our carer was doing her best to ensure her husband drank enough – especially in the how weather.

Vaccinating all care home staff

The government recently announced: “People working in CQC-registered care homes will need to be fully COVID-19 vaccinated with both doses”.

Whatever your views on this, it puts care homes under further pressure. Currently, care home costs vary, but are a real burden on those who have to pay (more information on costs from ‘Which’ here). Care homes tend to pay low wages and staff have very difficult jobs (here is an article from The Guardian). Covid has put an enormous strain on this sector (see a BBC article here).

Something needs to be done. The Prime Minister has made promises.

I have also benefited from CBT, thanks to Lewisham and Greenwich NHS trust.