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.

Carers Group: 10/05/21

Still on Zoom, still able to meet people in a variety of home situations.

Mental Awareness Week

This year Metal Awareness Week is 10-16 May. The theme is “Connecting with nature”. You can find out more, including Top Tips here.

We had a smaller group than normal at this meeting, but they had plenty to discus. As usual, there is a summary below.

Being stable

A carer says his wife is now stable. Part of being ‘stable’ is that she is awake at night a lot and is also unpredictable. This continues to affect his well-being. Fortunately, her carers are coming back after a break during Covid. They will come 2 days a week for 4 hours. After a prolonged period of isolation with his wife, our carer is now hoping to get down to Cornwall to visit family.

Long Covid

Our carer who had covid, and now appears to have “Long Covid”, says he still tired. He was being monitored, but not any more. He may have to go back to the doctor, to discuss his ongoing problems. Once he has come downstairs, he prefers not to go back because he knows he will need to lie down to recover. He was building a shed but now hasn’t the energy to complete it.

His sister (who he cares for) came for lunch yesterday. She had a good meal. He thinks she doesn’t cook for herself. When she visited she had fruit, which she cut into very small pieces, she did the same with vegetables. He doesn’t think she cooks any carbohydrates.

She has a urine infection. Janet said that her thirst receptors may not be working, so he should watch her fluids. She doesn’t have a support package. When he goes to look in on her, he could say “Shall I make us a cup of tea?”. This would give him the opportunity to have a look in the cupboards to see what is in them.

The sister said she started to cook something on the stove, but when she came back an hour later it was burnt. She is loosing her hair – we speculated she might be due to her not be getting enough protein. She has dementia medication and has meds for loss of balance. It’s difficult finding the right mix of drugs to help and better quality of life/ side effects/ positives and negatives.

Paranoia

The brother said she gets a bee in her bonnet – example: watching Ian Wright she said their Dad was violent and he had to say that their dad wasn’t like that. He said COVID has helped him to become more patient. The sister has problems with paranoia and persecution complex. Her medication may need to be reviewed. Another carer said that his wife also had paranoia. It is distressing for her and the people around her. This couple had had zoom calls with her consultant. As a result of that discussion, this carer recommended keeping a diary of observations, so that you can see a pattern and any changes.

The first carer is going to find out about nutrition for his sister. He may try to get someone in to do breakfast and an evening meal. The sister is very suspicious and makes him feel on tenterhooks all the time. She is uncertain about her world. He agreed they need help from the memory clinic.

Tatiana said to monitor Aileen and liaise with social services. Try to gradually build up trust. For example – “we can have lunch at your place. We can cook together. Tell us what we can make.” He can then discover where she’s at with the cooking. He needs to find ways to access her cupboards and fridge. He should consider this as a way to solve the problem.

Another carer told us her dad is calmer. He has had a change of medication. He has an appointment at the Memory Clinic chis week. He is suspicious all the time. He got some mail and wouldn’t put it down, then hid it for 2 weeks. On a positive note, they have received a pack of activities from cognitive therapy – over 100 things to help and prompts to stimulate him.

Yoga Nidra

Janet revived a previously popular session and invited us to enter “a state in which the body is completely relaxed, and the practitioner becomes systematically and increasingly aware of the inner world by following a set of verbal instructions.” [Wikipedia] As usual, this was popular.

A special thanks to Gyda, who has being taking the notes for these meetings and the Friendship Group meetings. She is a star.

Carers Group: 12/04/21

Sunshine and fine days have arrived.

Overcoming the habit of negative self-talk

Janet spoke about “A habit worth breaking”. This about becoming aware of our negative internal self-talk, which can damage our self esteem. “Even the smallest shift in our choice of words can make a big difference to how we feel.”

You can find a video on this here and below the video link is a link to a PDF which guides you through a paper exercise to help you break the habit. You might want to read more of the fascinating articles and watch the videos on the ‘Pick up Limes‘ website.

I’m ok – you’re ok

It’s good to know even if a group member can’t come to the meeting they can tell us they are making cakes and their husband is ok.

Sad news

Another absentee sent a sadder message.  Her mum had a fall and an unexpected seizure. She was moved to a nursing home. Sadly her mum died last night. She said the Carers group has been such a help and support to her. She hopes to attend next month.

Being “made comfortable”

A carer talked about his wife. He had been speaking with the doctor at Queen Elizabeth hospital. They have stopped her treatment as she is now too weak. She is now in a sleep state with oxygen. She doesn’t recognise him and is not eating or drinking. She is being made comfortable, allowing her to pass with dignity.

He’s trying to get on with life but it’s hard. There had been difficulties in getting information from the hospital. The hospital did apologise There was a lack of coordination and no involvement from different agencies in his wife’s complex case.

Tatiana said Social Services should have been involved and to complain.

We discussed a possible move to the Greenwich and Bexley hospice. Janet followed-up by contacting them about their criteria for admissions.

Greenwich and Bexley hospice

The hospice is faced with a lot of demand:

  • They take people in the last 2-3 weeks of their life
  • Referrals can come from a district nurse, doctor or hospital
  • Each morning they have a meeting and prioritise those looking to be admitted. For example: someone live at home alone, would be a higher priority than someone in hospital.

Feeling helpless

Another carer (who had just had a successful move) – said her person in a care home had deteriorated. She had a chat to the manager who seems to think she’s doing ok. She has had the 2nd jab. She is able to visit in the room, but it finds it upsetting. “If you love someone you feel helpless and hope they know that they have someone in their corner.” She wonders if could she could have done more. 

No sleep

A member, being cared for at home, is restless day and night. A few weeks ago her husband found her on the hall floor in a pool of blood. She had a seizure. They went to A&E in an ambulance. A cut eyebrow, black eye, swollen neck – she  is ok now. The medication had been reduced. He has to keep an eye on her all the time and is going to speak to the doctor again, as he is getting no sleep and it is dragging him down. The good news is their daughter had a baby – a boy – 5 weeks ago. Granddad and grandma went to visit. They hadn’t been in the car for a year. It was a challenge! She liked seeing the baby.

Filling gaps in your memory

Our carer looking after his sister, who lives separately, had tried to get her round to his house. She has it in her mind that next door have COVID – from a message on her phone. She fills in stuff and he spends hours talking her down. He gives in sometimes when he can’t get to the bottom of it. He feels frustrated and is waiting for the time when it gets worse. Janet said the gaps in the memory get made up. Go with the flow and try not to let it upset you too much. He is still feeling tired from having COVID. His wife got a penalty ticket for going in a COVID zone by accident – there wasn’t a sign.

A favourite cardigan

Our keen cyclist is trying to calm down and roll with the punches. Her mum is reluctant to change her clothes and is very fond of a blue cardigan so the daughter has to be a bit sneaky to get it from her to wash it. Mum is getting more forgetful and says she’s been to Bromley on the bus with her friend, when she hasn’t been for 15 years. Janet says it’s her version of the truth. Mum has lost interest in puzzles and painting – so they are planting seeds. The neighbours are kind and are aware of mum and will phone the daughter if they are worried, but she says a phone call won’t do – it has to be face to face. She has been cycling a bit more.

A need for action

Our member, who usually says her dad is ok, said her Dad didn’t wake up one morning! An ambulance was called. He woke in the ambulance He was unresponsive for three hours. He had tests and is fine. They don’t know why it happened. His sleep tablet has been cut untill they know why. He’s fine, back to his normal muddled self. He is waiting for an appointment at the Memory Clinic and the doctor tomorrow. His hallucinations are a lot more frequent and aggressive – He hits himself or the wall with pent up anger. He is seeing people but doesn’t name them – or someone is sitting in his chair – or the living room is full of people and you can’t go in there. Janet said – get in touch with the Memory clinic and Titiana said – keep phoning them and explain the urgency of the hallucinations and episodes 

Carers Group: 8/03/21

Spring is almost here.

Lockdown easing and visiting care homes

The government’s guidance state that from today (8th March) one carer should be able to visit the person they care for, in a care home.

A group carer had been identified, by her person’s care home, as a “designated visitor“. She understood she would need to have a lateral flow test and wear PPE when visiting.

In contrast, at a different care home, another carer had been told she needed to have: her first vaccination; lateral flow tests and a PCR test; and she would need to download an app to her smartphone so she could upload the results of her lateral flow tests. She would receive a ‘bundle’ and instructions for using the app. Pending the new arrangements, the “visiting room” was being used.

All care homes are trying to protect their residents, but getting the right safety balance is not easy.

Hospital

A member of our friendship Group joined this group for the first time. His wife had been admitted to hospital and, after some care, had been discharged. She was still not well so he phoned for an ambulance and she was readmitted. Over the last few days he has been trying to speak to a doctor to find ourt what is happening and what they plan to do. Unfortunately there is always a reason why the doctor cannot speak to him. Promises of ring-backs have not happened. The nurses report she is ok, but say nothing beyond that. He can’t see anyone to get an explanation and cannot visit his wife.

Tatiana suggested he talk to the nurse in change on the ward. Make sure they are aware of the unsafe discharge and that they make a note of what happened. Before she is discharged there should be a care plan in place (which may be different from the current one) and that social services in the hospital are involved.

Being stable

A regular carer was pleased to say his wife was more stable. Her drugs had been reduced, which was generally good news. Unfortunately, she was not sleeping, which meant he wasn’t sleeping. He will speak to the GP about a solution. On a very positive note – they are about to become grandparents.

The group suggested her mum get a mobile phone. This had been tried and she had mislaid three of them!

Spreading the load

A carer was still recovering from his experience with covid. His sister, who lives separately, had been visited by his daughter. Now the daughter had moved away and the caring duties returned fully to our member. He was managing, but finding it difficult.

Lewy bodies

“Lewy Bodies are clumps of protein that can form in the brain. When they build up, they can cause problems with the brain works. This may include: memory, movement, thinking skills, mood and behaviour.” People who have dementia with Lewy bodies can have visual hallucinations. Our member said her dad sometimes thought the people on the television were in his room and he would also talk to photographs. He was doing ok and the memory clinic aimed to get him into one of their cognitive stimulation groups – this will be an interesting challenge on Zoom! You can read more about dementia with Lewy Bodies here.

Carer care

One of the group told us about her struggle to cope with the issues in her life and particularly the change in her mum’s attitude towards her. Our member had decided she needed help, even though she believes she knows what to do to help herself. She knows she has made the right decision and the support was helping to put her in a better position.

Activity – it’s good for you

I did a short session on getting more active. While most of us know what we should be doing – there is often a disconnect between the theory and the practice.

Have goals and track you progress against the goals. This is useful for you and will provide evidence to others (for example if you need to involve your GP or hospital). Choose the things you like, but will also challenge you.

Things to do:

  • Yoga – it helps your mood and balance
  • Have your “Playlists for life” – very effective with managing moods
  • Exercise – with lockdown ending we need to be mobile and improve our general fitness
  • Reminisce – it works the memory and can help ease depression
  • Socialise (when you can) – raises the spirits and exercises the mind
  • Engage with nature – a quick way to feel better and do something useful (for example – watering plants)
  • Sit somewhere different – a change in perspective helps get us out of a rut

Try some of these.

Next meeting the 12th April.

Carers Group: 8/02/21

The snow was deep and crisp and icy. Fortunately, we were on Zoom. We were able to have a full meeting, in the warmth of our own homes.

Teepa Snow: the GEMS model

Peter revisited this model. Teepa Snow’s fascinating video introduction to the model is here.

To quote the web site: “The only constant with dementia, or brains in general, is that they are ever-changing. All humans experience brain change every day. This GEMS Model, developed by Teepa Snow and based on the Allen Cognitive Scale, recognizes the shifts in our skills and abilities in any given moment. With dementia, while the progression, pattern, and changes may look very different for each type of dementia, the movement through the GEMS is somewhat predictable. Your understanding of the remaining abilities at each step of this journey can make a world of difference.” – “Just like gems, each person is precious, valuable, and unique, and given the right setting and care, can shine.” – Teepa Snow

Covid vaccine

We were told that vaccinations were progressing well. One issue raised was about where someone has had an allergic reaction to vaccinations in the past. The questions asked before someone has the covid jab include ones about reactions and anaphylactic shock. The guidance is very clear that anyone who is vulnerable should raise the potential issue and only be vaccinated in a hospital.

Some vaccination centres are ahead of others. Guys hospital, for example, is able to vaccinate carers (the call handlers vet those claiming to be carers). Having had rather a lot of visits to Guys recently, I recommend their efficient and very clean centres.

Guys is where I had my jab. For me it was quick, painless and came with a cup of coffee and a biscuit. Thank you NHS.

Scam phone calls

Sadly a carer reported her mum had been receiving lots of scam calls on her land-line. The callers claimed to be from a variety of organisations, including HMRC and BT. They asked for personal details. Stopping these calls is very difficult, as the callers use a variety of numbers and block tracing. The police were involved in this case. They advised the mum to hang up if she didn’t know the caller – she replied “but that would be very rude”.

The group suggested her mum get a mobile phone. This had been tried and she had mislaid three of them!

Easy use Telephones

The group liked the idea of phones with big keys, showing photos of the people who had been pre-programmed into the phone,

Here is an example [we have not tested this model – it is included just for information].

Keep warm

Another story was about a mum turning the heating down, she didn’t want a big bill. There had been several discussions about the need to keep warm, particularly as the mum doesn’t move about very much. This hadn’t been as successful as hoped for. The mum, somewhat frustrated with the radiator controls, had smashed them with a broom handle.

Janet suggested putting notes around the house reminding mum, and any visitors, not to turn the heating off.

The mum and daughter came to our Friendship group the following day. Janet asked the mum, in passing, if she was warm enough. She said “yes” and that she would never turn the heating off and be cold…

Melting away

Being isolated in a care home is having negative effects on those staying there. A carer said her mum’s home had not had any covid cases and they wanted to keep it that way. This was good news from a physical health perspective, but was having a big impact on mental health. The carer felt her mum was melting away. The lack of in-person contact is leading to difficulties in communicating by phone, as mum is unsure about who she is talking to and is easily distracted.

Emotional rollercoaster

A carer, who has been at home with his wife for many months, said that she doesn’t recognise him and her emotions were in turmoil. She had lost her language. He tries a variety of methods to distract and calm her, sometimes succeeding. Like other group members the strain is clear when he speaks, but he puts a brave face on and is as positive as possible.

Dementia and learning difficulties

People often don’t just have one issue to deal with. In this case, the challenges of being in a care home continue to cause the person, her carer, and the home problems and stress. Here is another home that has no cases of covid and is very protective of its people – especially as it is in an area of very high infection rates. The person wants to see her carer, wants to go home and can not understand what is happening to her. Her frustration means she is considered a “disruptive” person.

Carer mental well-being

How would you cope if you were looking after three old ladies each with different ailments and a son? What if, in addition, your husband and father had died in the recent past. And then covid and lockdown arrives? How much counselling and support would be needed?

Charcoal

Some people with dementia develop their own ideas on health remedies, often based on memories from the past. A carer mentioned again that his sister had decided that charcoal would help fend off covid. The group seem to think it odd that anyone would want to take charcoal. A quick look at Amazon shows that charcoal is a popular remedy (but not for covid), see here.

On a positive note, the sister has a covid jab booked.

Let’s see some real people!

Our final story was from a carer who’s dad was doing well. He often spoke to family and friends on the telephone. This went well, but then he was keen to go and meet them. He had difficulty in understanding why he couldn’t.

Postscript

We were ready to say goodbye, when the subject of disappearing pens came up. Two carers said that pens had found their ways into mysterious areas of trousers or leggings. How they got there and how to get them out had been proving a challenge.

Next meeting the 8th March.