Carers Group: 13/7/20

We welcomed our lively group for another wide-ranging discussion at the Reflections Carers Support Group monthly meeting.

Looking for a care home

Several members said the pressures of being a family, living with someone with dementia and confined within their home for a long time, had created tensions, particularly when the loved one was clearly moving on in their dementia journey. One member told us that she thought it could be time to start looking for a care home for her mum. The carer was very stressed, she said her family were stressed and mum was stressed. She was concerned that a change would be bad for her mum, but something needed to happen. Unfortunately, even though we appear to be coming out of lock-down in many areas, viewing prospective care homes is still not possible at the moment. In the interim, the GP and Memory clinic are helping.

Visiting a care home

A group member told us how things had been improving. Her mum’s care home had advised her to stay away when the pandemic arrived. “It was just like pressing pause” and she was concerned her mum would forget her. However, they meet via FaceTime. She is now able to visit the home once a week and they speak, either in the garden, or through an open door. Mum remembers her and they enjoy a chat. She sends a letter with a memorable photo once a week, and a member of the care home staff reads it to mum. Everyone at the home has had 2 Covid tests and no one had the virus. Very soon the care home will allow two visits a week.

Language

At this meeting, and at our Friendship Group, we were reminded that when English is not your first language, dementia can bring communication issues. You may try to express yourself, but be met with blank expressions. You might be speaking clearly and making perfect sense, but not in English. Or, you could be in a care home where few, if anyone, speaks the language you find most comfortable.

If you have a moment, you might be interested in this article from the “International Journal of Geriatric Psychiatry” [great title!]. It is worth persevering past the academic language (you may consider that the staff comments sometimes say more about them than the people they are dealing with).

Stress, rage and frustration

We regularly revisit the impact of stress on the mental and physical health of our carers. While carers may wear a smile, it often disguises what they are dealing with. Carers feel they should be able to cope, even when it would be unreasonable for anyone to cope with the issues they are facing on their own. It is not a sign of weakness to seek out help, it is a sign of strength.

Carers UK produced advice on “Coronavirus – protecting your mental wellbeing” which you can read here.

Alzheimer’s Research UK produced a report in 2015 “Dementia in the Family: The impact on carers”. You can read more here.

The slightly unusual, becomes usual

Some comments from today’s group: “Dad thinks different rooms are different houses”. “We go out for a walk every day – she hates it”. “If she is not interested, she pretends she’s is asleep”. “She was agoraphobic, now I’m concerned she wants to go out all the time”.

Goodbye’s

Sadly, we say goodbye to two more relatives of our carers who have passed away. One of the carers came to the group and we were pleased to hear her story. We send our best wishes to everyone in these difficult times.

Peter’s piece: The Alzheimer’s Show – Admiral nurse service

Janet and I attended the first webinar of this year’s Alzheimer’s Show run by the nurses. Some of the key points they made were:

  • They have a helpline (see below) which anyone can use (you don’t need to have an Admiral Nurse in your area).
  • If the line is busy, leave a message, they aim to get back to you within 24 hours.
  • Memory Clinics across the country are reporting a 6 month delay in seeing people (Janet is checking with our local Oxlea’s service).
  • People with dementia were left off the government’s list of vulnerable people.
  • Family members of people with dementia were not classified as “key workers”.
  • Care homes were starting to accept new residents, but they would need to self isolate for 14 days.
  • Day Centres had not announced when they would reopen. When they did, numbers attending would need to be reduced, with steps taken to minimise risk of infection.

There are lots more free webinars coming up from The Alzheimer’s Show. To find our more see here. If you have an interest in a topic, it is worth registering, as even if you are not able to attend, they will send you a link to a recording of the webinar.

Sports & fitness – 7th July 2020

A busy afternoon at the Friendship Group. Fortunately, at least one member of the group was keen to keep us focused on the essentials.

Janet asked the group about whether they enjoyed their school sports. There was mixed feedback – Danny said he liked them because they got him our of boring lessons! We also had a poll about members fitness activities in adult life. Two people picked belly dancing, the others brought up cycling, dancing, running, Nordic stick walking and more.

Everyone went into their rooms for a chat and Roxana had the first of her one-to-one information discussions. Our late arrivals, who are Irish, took the opportunity to discus “Irish things” (whatever they are).

Danny led a discussion about how we have been using the information from his regular sessions on “Homes for Wellbeing”

Due the wonders of Zoom, Danny joined us from his holiday in Estonia. Here he is in the local swamp.

If you want to know more about Estonian swamps (or “Bogs”) I have found a guide here.

If you want to see more about Estonia read more here.

Pearl had lined-up some more great songs for us to sing: “Football Crazy” and “Walk Tall”

Gyda gave us our toughest craft challenge so far. With card, pen, scissors, and a lot of concentration – some of us managed to make a trophy cup. Gyda suggested decorating it with our own words/pictures.

I didn’t finish – so – more homework for me.

Pearl gave us football and golf jokes:

Janet had created her own quiz about sport. It was a bit easier than some of our recent quizzes and I managed to do well – but not as good as a couple of members who managed to get 19/20 right!

Gerry’s poetry reading was “Sport”:

We were pleased Lynne returned this week. We look forward to another one of her quizzes soon.

Janet led the sing-a-long and introduced a special version of Tony Chestnut recorded by the group’s friend Emma.

Nearly everyone joined in the sing-a-long-with-actions

Gyda tells us – peace is the only way forward:

Janet started the countdown to Reflection’s 4th Birthday Party next week. It should be fun, with special guests, new activities and Emma leading a singing session.

See you next time.

Shops of yesteryear – 30th June 2020

We had a record turn-out for one of our Zoom meetings. We were very pleased that 21 people popped-in for a chat. There were also 7 volunteers, plus Sharon from the Carers Centre and Roxana from BLG Mind. A packed afternoon. Janet started us off with a question about shops we remember.

Not everyone voted, but Woolworth was popular, as were a few department stores from the local area such as Hinds of Eltham and Chiesmans of Lewisham. The Independent local shop remembered was in Liverpool – a “Pound Shop“, that in those days sold items for pennies.

We split into rooms for more discussions. As we chatted, we were pleasantly surprised to be joined by some new Zoomers who managed to sign-in for the first time. Roxana had a one-to-one with a member who wanted some advice.

Geny returned for some more seated yoga.

This week’s session was particularly popular. The group enjoyed the arm exercises.

Pearl had another couple of songs for us – I did like the Beatles tune “Penny Lane”.

Gyda was folding paper again, this time with glue! The result was a very tasteful bag.

I got a bit lost with all the folds, so it looks like more homework for me.

Pearl gave us golf and school jokes:

Janet had compiled her own quiz based on well known TV adverts from years ago. We did remember most of the adverts, but not all the details about the products and makes. The “Shake and vac” advert led to some singing – and I believe Sharon said she still uses it. 17/20 was the best score for the quiz.

Lynne was almost back – we are very sure she will probably resurface next time.

Gerry’s poetry reading was “The corner shop”:

We were overrunning as usual, but Janet managed to squeeze in “Three Little Birds” by Tony.

Gyda recommends we should be open to life:

It was time for tea, so most of us went home. It was great to see some members who hadn’t seen each other since the beginning of lock-down stay on for a bit more of a chat after the session had ended.

See you next time.

Pets – 23rd June 2020

Pets were very popular today. There were 2 dogs, 1 cat and 3 animatronic cats (Eric, Ernie and the newly arrived Mr Preview). Unfortunately, most were camera shy.

Here is Janet with one that didn’t get away. You might spot a likeness to Janet – see Gyda’s craft session below.

Our chats in small groups focused mainly on animals. Pearl told us about her pet cat who (to his surprise) came on a delivery van from Liverpool. Ron had a tale about a camel being shot, but I missed the full story, so it might have been shot with a camera or a gun.

Gyda’s guided us through drawing ourselves as a cat.

Roxana, from BLG Mind, joined in and came up with a cat of character.

Some of us are slacking with Gyda’s homework. Mary reminded us that we should be doing more.

Pearl had searched out a substantial list of animal sing-a-long tunes. A highlight of her audience participation session was the golden oldie: “Nellie the Elephant

Pearl’s ducks and cows:

Does anyone remember ‘Uncle Mac”? Pearl does, but she might be on her own.

For nostalgia buffs: Uncle Mac appeared on the BBC’s Home Service in ‘Children’s hour”. He had a strict philosophy: “Our established policy is that nothing but the best is good enough for children … our wish is to stimulate their imagination, direct their reading, encourage their various interests, widen their outlook, and inculcate the Christian principles of love of God and their neighbour.” [BBC Quarterly, Jan 1948].

Danny gave us tips about finding things in our home. His tips were based on those suggested by Wendy Mitchell, who was diagnosed with young onset dementia. There are simple things you can do to make it easier for a person living with dementia to find things in their home. Wendy explains her tips in a video which you can find on Danny’s page.

Still no Lynne – she hopes to be back next week – the excitement is building.

Gerry’s poetry reading – “5 cats”:

By this time we had enough cats for a catalogue.

Gyda led a finger stretching exercise:

The stretching proved very popular

I think this could be the pre-breakfast exercise for everyone

Janet led us through: “Tony Chestnut” and Tony Martin‘s “Three Little Birds”

Gyda suggests we have less unease:

Roxana stayed on at the end of the session to provide some advice and guidance to a group member. We are very pleased to continue our links with BLG Mind. You may see more information about their services on their website here.

Janet finished the session with some notices. Readers will be interested to see the Alzheimer’s Show 2020 will be online and you can register for free information webinars here. Our report on last year’s show is here.

For those interested in further reading The Recovery College magazine provides interesting and thought provoking articles as well as things to do. You can sample the latest edition here.

Holidays – 16th June 2020

We were very pleased to see our regulars today – and some returners. Dot and Jen managed to squeeze in a sandwich and cup of tea before we got busy…

Holidays were the theme of the day.

We asked everyone where and when they had their favourite holiday – they came up with a wide variety of answers – Egypt was popular, even though for one person it was during their military service.

We spent some time in discussions in small groups. One group of carers took the opportunity to discuss some serious matters. Others came up with schooldays pranks. A few even talked about holidays.

Gyda’s craft was a big fish!

This one was simple enough for most of us to master.

Gyda suggested those of us who were a bit slow (me) should consider it homework.

Pearl entertained us with three songs, including a karaoke version of “Summer Holiday”. Cliff (aka The King of Rock & Roll) would be proud.

Pearl’s pains were nothing compared to these panes:

No quiz from Lynne. In fact, no Lynne. She was off doing something important elsewhere. Danny was awol too, he had work to do. Both will be back with us next week.

David recited his latest highly topical poem:

David had been practicing some of Gyda’s craft ideas. I managed to come-up with my version of a day-in-the-life booklet, as demonstrated last week.

Gerry’s poem on the theme of holidays was “Day Tripper”:

We had a couple of people who asked for a chat with Sharon, from the Carers Centre. She couldn’t be with us today, but had arranged to follow-up with people after the meeting.

Gyda’s was back with an exercise for the 5 senses:

Pearl had some more rib-tickling jokes, which we managed to squeeze in before…

It seems people had been working on their fish, while other things were going on..

Gyda was feeling good and so were we after this thought for today:

Janet introduced the singing.

We had another new song from Tony. This is Janet’s favourite: “Ring of Fire”, complete with Mariachi band.

We were still chatting at 3:20 – but then everyone agreed it was time for tea.

Childhood – 9th June 2020

We had a team briefing before the group started, as it was Eric and Ernie’s first session on Zoom. Everyone seemed pleased to see them and they were very well behaved.

Today we were talking about childhood. We all took the opportunity to sort out some pictures of when we were children, and some people were willing to show the group what they found.

The polls this week were about being in school. Most people had not enjoyed their time at school and even more disliked school dinners (one agreed with me that the dinners were ok, except for the lumpy custard).

We all joined-in the discussions in small groups. I think David came up with another dubious story about his youth, but I only managed to catch his mischievous smile at the end.

Geny joined us again for a (mainly) seated yoga session.

You may find more information about Geny, including her yoga classes, by clicking the link below

The small group who didn’t join the yoga had the benefit of rather a long chat – Geny’s signal (from her seaside location) had a bit of a pause, so we restarted and had the full session. Thanks Geny.

Gyda have us a rather testing craft today.

We made a book by folding and cutting an A4 piece of paper.

It’s mainly for drawing your day, as it’s easier, but you can add words too.

Set up the book by writing the following: Front cover “Tell me about your day” and “Name” at the bottom – Page 1 “WHO” at the top and “WHAT” at the bottom – Page 2  “WHERE”  at the top and “WHEN”  at the bottom – Page 3 “AND HOW” at the top – Page 4  blank – Page  5 “THE  WHOLE DAY” at the top  – Page 6 “TURNED OUT” at the bottom. Then you can fill it in with drawings of your day.


Pearl entertained us with some songs. She sang the single bed version of “There were 10 in the bed” – this time there were only 6 in the bed.

Danny’s talk today was on the importance of daylight on our wellbeing..

Danny told us how daylight affects our circadian rhythm and helps with metabolising food. He advised spending time in the rooms with good light, maybe changing rooms throughout the day if necessary. He also advised of the importance of going outside, to get the maximum daylight and make a connection with the outdoors.

Here are two of Pearl’s best jokes.

There was so much to do this week that Lynne’s quiz has needed to be pushed back to next week.

Gerry recited the poem “I remember, I remember”

Roxana joined us on behalf of BLG Mind again. She had the chance to help a couple of people – and produce the best book in Gyda’s craft window.

The group ended with Gyda’s reflection piece on patience.

The group over ran a bit. We had rather a lot of people popping in and out – including another first for us – a Korean carer in PPE gear!

We had a break to prepare for the singing.

Our last song was very appropriate, given Eric and Earnie were with us. Tony had sent us his newly recorded version of “Bring me sunshine” at 2:39am today. Reflections, and our friends, are 24/7 not 9 to 5. We can all sing-a-long to this one.

At the beginning we thought it might prove challenging to fill 2 hours with our virtual Friendship Group. Instead, we are finding there is more than we can fit in each week, which is wonderful.

Carers Group: 8/6/20

We held another online group meeting on Zoom. There were 12 people at the meeting and we had a very full evening of discussion..

Covid-19 discharge

The meeting started with a tale of a member’s mum being discharged from hospital to a care home 35 miles away from the daughter. We have been told of 3 stories of people being discharged from hospital to a temporary placement in a care home. Tatiana informed the group there is currently in force, in hospitals, a Covid-19 discharge plan. This paper sets out NHS policy on hospital discharge. The summary states: “Unless required to be in hospital, patients must not remain in an NHS bed. Based on these criteria, acute and community hospitals must discharge all patients as soon as they are clinically safe to do so. Transfer from the ward should happen within one hour of that decision being made to a designated discharge area. Discharge from hospital should happen as soon after that as possible, normally within 2 hours.

The carer thought mum’s home was probable quite good. It has a cinema and a hairdresser, amongst other features. But there had been only 3 hours notice of discharge and no opportunity to choose a care home (the daughter had identified 3 local to her). Tatiana gave some general advice about contacting the key decision makers and highlighted that there would be several key people who each have part of the responsibility for the next stage of mum’s care. The current placement would be temporary, to give all those involved the chance to agree the next move.

Caring – at a distance

Several of our carers do not (usually) live with the person they care for. The current situation had added additional layers of complexity to their caring role.

One carer was trying to resolve he mum’s car home placement. Mum’s care home costs were being paid by the council on a “non-prejudicial basis” while a financial assessment was being completed. The home seemed good for mum, however, the ‘top-up” cost would be high; mum’s saving were near the £23,000 threshold; the care home had been rated “inadequate” by the Care Quality Commission (CQC); and all the care home and council contacts had stopped giving advice or guidance. Tatiana advised that the carer should be consulted at every stage of the decision making process, as she had powers of attorney. As usual the carer needed to be proactive and assertive to ensure mum got the best deal and the right home for her.

Two stories of confused mums

The first mum’s issues had become clearer when her husband had recently died. She had stayed with the daughter, which proved stressful. The grandchildren had taken mum home to see if she would settle. Out of her home situation she had not been focused on the absence of her husband, but back at home she repeatedly asked where he was. Moving her was unsettling and surfaced new issues.

The second mum was a bit further along her journey. Three months with the daughter led to the need for a break and she returned home. Now she is very happy and well cared for. The change is due to two factors. The carer spoke to Sharon, from the Carers Centre, who suggested mum might be depressed. The GP had agreed, and prescribed some anti-depressants. The results were rapid and very positive. Mum had also benefitted for some paid cares being found. There seemed extremely helpful and… caring. The mum was happy and the daughter was happy. This carer offered to speak privately to the first carer about their situations and options.

Janet noted that depression is common in people with dementia (and not necessarily a result of the dementia). And, depression can be cured. Talking to your GP, as circumstance change, can produce positive results.

Pills

We welcomed a regular couple from our Friendship Group. They are trying to support his sister, who lives alone. She had been engaged with the outside world prior to lock-down, accessing websites and being very chatty to family and friends. Now she has become less communicative and wary of making contact with people. The brother thought she was probably depressed. The relatives are concerned that she takes her correct dosage of pills. It appeared that sometimes pills would be taken, sometimes not, sometimes they would be put in an egg cup and tidied away in a cupboard. Group members were very familiar with this problem (not the egg cup!) and, from their experiences, thought she needed paid carers to support her. On a positive note, the brother had been in contact recently with the memory clinic and they had called his sister to discuss her current issues.

All fine here

A couple of carers said they were ok. They did qualify the comment with some issues, but they thought these were relatively minor.

Peter’s post-meeting piece: Stay well & look after yourself

The University of Exeter have produced two brief booklets aimed at helping carers and people with dementia during the lockdown. They present key messages to help us keep well during the current period of isolation.

You may read this leaflet here:

You may Read this leaflet here:

Cooking – 2nd June 2020

This week the theme was cooking. We were impressed to see people had been baking – unfortunately we couldn’t sample each other’s efforts (and David had eaten most of his).

Nice presentation

Sadly, not much left here! We should have come earlier

Cakes were sliding off the plate

We were very pleased to welcome back two long-standing members of the group, who had moved to Exeter. Running our group online means we can welcome visitors from anywhere in the world.

Following Janet’s introductions, we moved into our conversation rooms for 30 minutes. The small groups seem much more chatty now people are more relaxed with Zooming. Sharon, from the Carers Centre, gave some professional advice and guidance to two people at either end of the meeting (in private rooms).

Gyda was on top form with her crafts.

She showed us how to create an ice-cream using paper/cake cases, pens and scissors. Watching Gyda and hearing her detailed instructions encouraged us to produce high quality results. We can all practice and, if successful, show our creations next week.

Lynne’s quiz stretched our brains. If only I could have found a pen, I would have got 10/10.

Danny launched his “Homes for Wellbeing” window with some informed thought on reducing visual clutter.

Danny introduced his window with this: “Visual clutter becomes a problem when the eye can see too many things which causes a distraction in what you are doing. Even if you are not aware of these distractions, it can happen subconsciously. When there is too much visual clutter, it can make it harder to concentrate on carrying out a task or to find something in a room.

Pearl gave us a topical joke, just as coronavirus restrictions on the number of people meeting together were eased.

Our weekly polls confirmed that the group were keen on cooking and eating. Not everyone seemed to have the best approach to regular meals (Sharon’s snacks) – but perhaps we need to find out more, there could be some interesting dietary planning at work.

Gerry recited the poem “Baking distress”

The singing was of its regular high standard. I always enjoy the slight delay between the music and each person’s singing. We are all on “mute”, so this isn’t a problem, but the collective movement from each person’s is delightful.

The group ended with Gyda’s reflection piece on the power of thought.

We are so pleased that our group members continue to pop into these Friendship Group sessions. We know not everyone will be able to come every week, or for the whole meeting. It is wonderful that people come when they can. I have trial runs on Mondays for those wishing to join-in and new to Zoom. This week another couple set up Zoom on their smart-phone and should be joining us next week. If you want you know more about our groups please contact us.

The group, enjoying themselves, as usual.

Our last song of the session was a tune with a special message from our friend the talented Tony. This is an appropriate song for the current times. It is now our new group song.

It is Volunteers Week from 1-7 June. A big thank you to all our wonderful team, without whom we couldn’t do what we do. There are no paid staff in Reflections everyone volunteers their time. We are very grateful for all they do to make our groups a success.

Hobbies 26th May 2020

Today’s theme was Hobbies. Most of us have enjoyed the chance to immerse ourselves in something we want to do, be it stamp collecting, knitting, belly dancing, sewing, singing in a choir etc. It’s never too late to start a new hobby.

You may remember these books from your childhood. I loved the Ladybird books.

The group chatted about their hobbies in the Zoom rooms. There were some interesting examples and some group members had even made money from their hobby. Joyce showed us one of her many scrap-books from over 40 years ago.

David’s painting hobby is rapidly filling his house. Luckily his other hobby is cycling, which gets him out and about!

Janet is always keen on a quiz and today was no exception. Everyone wracked their brains to find answers to questions about May. The exception was Mary, who had done the quiz before and got all the questions right.

Pearl gave us some cracking jokes – like this one.

I was very pleased to see that some members of the group managed to join us live and direct from their gardens. Fortunately, the sun was shinning. Gyda’s craft window was a bit tricky today – drawing a word with outlined letters, then cutting them out, cutting each letter in half, then trying to reassemble the original word – an instant jigsaw! Gyda gave us the suggestion for homework of repeating the craft, by writing our name on a piece of card and colouring it in, before cutting it up and bringing it along next week to share with the group.

Gerry entertained us with the poem “I don’t like hobbies”

Every session has singing and, for once, we managed to have a reasonable sound quality. Everyone was particularly pleased when they could make out all the words to Tony Chestnut.

Towards the end of an extended group meeting, Gyda led us through a hand massage.

Every week we find out more interesting snippets about our group. Danny was very chatty about his architecture studies in one of our chat rooms. Next week he has promised to start a short weekly window about how we can improve our homes to improve our lives – particularly for those affected by dementia.

Every session requires some thought – only Danny looks relaxed – next week he might be a bit more stressed.

Reflections goes upmarket!

On 25 May 2020 we launched the new upgraded version of the Reflections website. We aim to improve the content and layout of this site for your reading (and listening) pleasure.

Our reasons for changing the website are: we were able to choose a more memorable name, adverts were removed and we have the addition of being able to upload audio files. Whilst we have to be careful with photos, to maintain anonymity of members at the group, audio files allow reminiscence and recall without revealing the identity of the group member.

The ever popular Tony Martin has been a regular at our Friendship Group meetings at Shrewsbury House, almost since we started. While we are waiting to return, here is a quick tune from Tony, written by the man himself.

Interlude with Tony

We do have a few short audio clips, recorded at previous sessions of the Friendship Group at Shrewsbury House. Over the coming weeks I plan to attach these to the relevant blogs for your enjoyment.