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.

Carers Group: 11/01/21

The group were back for the first meeting of the new year.

Coping strategies for feelings of being overwhelmed

Peter spoke about the issue that affects many of us at the moment. A summary of the talk is here and a one page help-sheet here.

Dementia research

Janet talked through the possibly avoidable factors contributing to developing dementia.

Vaccinations

A very popular topic. Several members of the group had taken their loved one for their first jab. Local surgeries and the Princess Royal hospital had provided a very safe and efficient service. Picking a quiet time was recommended.

Covid

Two members had contracted the virus. One had thought it was just a cold but, at Janet’s prompting, they had gone for a test – and came back positive. The other’s husband had gone into hospital, caught it, come out and given it to her. Both were able to pop along to the group for a short while – another success for Zooming. We wish thenm a speedy recovery.

Missing? Presumed dead?

Two very unfortunate stories.

One person had been in and out of hospital. On trying to trace them in hospital, their wife had to wait 48 hours before she was able to make contact. Other patients in the ward were eventually able to make calls to the carer – the hospital staff less successful.

Another carer was confused when she tried to get her mum’s prescription. Mum had been recently discharged from hospital. The hospital didn’t tell her GP that she had been discharged, they said she was dead! The pharmacist was, understandably, reluctant to issue a prescription for a dead person. The carer said “But I only spoke to her 10 minutes ago – she is at home!”. In the end, it was agreed she was alive [and came to our Friendship Group on the 12th January].

Visiting Care homes

More changes have come about with the latest lockdown. One carer is concerned that her relative is feeling isolated and depressed. Their home is understaffed (due to the virus) and is not providing the stimulation, activities, and other support that is needed. There has been a promise of an assessment visit from the mental health team.

Another carer was told she can visit her mum, by standing on a wooden plinth outside and speaking through a window. The home had arranged a special room for visitors, but this was not going to be used for the foreseeable future. Update: the day after this meeting the carer contacted the home, was assertive in setting out the reasons why the special room should be used – and the care home manager agreed. Success! Update2: the following day the home owner stated the home would not allow visitors to use the special room.

Location, location, location

We were told a Friendship Group regular was now reluctant to eat – in the kitchen. But, she would eat – in a favourite chair. Feeling safe, comfortable and relaxed made all the difference.

90 minute turn-around

Christmas had gone really well for a carer and her mum. In the evening the carer returned to her home, then 90 minutes later she had a call from her mum’s neighbour. Mum had come round asking questions in a confused state. The carer went back and found her mum’s mental state had radically changed. Just a temporary blip. Since then, mum has continued to be rather good at cooking vegetables, but forgets the meat and potatoes.

It was good to see the group members and hear how they were managing, even it these difficult times.

Next meeting the 8th February.

Carers Group: 14/12/20

Our last Carers Group of 2020. It has been a very difficult year for many reasons. We were pleased that this evening’s group had many positive comments and stories.

Janet’s report from the Greenwich Dementia Action Group (DAG)

The group had a very interesting insight into what the council have been doing to support and protect those in care homes. This information was correct at the time of the meeting, but subject to change afterwards.

  • Homes had allocated “staff wellbeing rooms” to allow staff (who are on 12 hour shifts) to have a space to take a beak from the stress of their work.
  • The council had made a commitment that no-one with a positive covid test would be discharged from hospital into a care home. Those waiting discharge would have a test 24 hours before leaving the hospital. If they were positive, then they would be placed in the Eltham Community Hospital, or remain in hospital, until they were clear.
  • Decisions on having visitors in care homes must be agreed by the local Director of Public Health, after appropriate safeguards have been put in place.
  • Visitors to care homes will need to be tested 24 hours before their visit. On arrival, they will need to change their clothes and wear a mask. They will be allowed to hug their relative, but not kiss them.
  • “Lateral-flow” 30 minus tests will be rolled-out, following a pilot. This test is very staff-time-intensive.
  • Visits will take place in bedrooms or visitor areas.
  • The vaccine is being rolled-out to residents and staff from 3 local hospitals: Kings, Guys and the Princess Royal. At the time of the meeting the vaccine was being distributed in packs of 975, which could not be split and needed to be used within 3 days.
  • Once vaccinated the usual hands/face/space rules still apply.
  • Testing for the virus will be once each week. If there is an outbreak, then an action meeting will be held within 24 hours.
  • Care home inspections have ben suspended for the time being.
  • Staff should not now work across multiple sites or multiple locations within one home.

Visiting care homes (carers’ experiences)

The arrangements are changing regularly, as the government policy twists, u-turns, and is re-interpreted.

One carer told us she had been told the Christmas arrangements at her mum’s care home would involve: A quick virus test (the 20 minute Lateral Flow Test), clean cloths, masks etc, chaperoning by staff = a 15 minute visit.

Another carer said her relative’s home would be ready for visits soon, using a perspex screen to divide the room. She couldn’t get an appointment until 28th December.

Reducing medication

A long standing member of our Friendship Group had benefitted from having her medication reduced, following a cautious plan. Her paranoia had resurfaced, but was forgotten after 30 seconds – an interesting trade-off.

A degree of stress

An unexpected discussion had come about for a carer when his sister became distressed about not getting a first class degree – 30 years ago. Other concerns were around mobile phones, flu jabs, virus jabs, and taking carbon as a supplement, to name a few.

Eating and drinking

A husband forgets to drink, which causes medical issues. A mum has decided she will only eat chops, which has not caused any problems. Carers need to go with the flow.

Covid vaccinations

We have one mum lined up for a vaccination on 11 January at Guy’s hospital and another at the Pru. It looks like the NHS is rapidly contacting people in the top category of those in need. Both of the mums’ carers were in a rather positive mood.

We hope the New Year brings more good news. We are back on 11th January 2021.

Carers Group: 9/11/20

Plenty to talk about, as usual. We had some thought provoking updates from our group members. There were contrasting experiences in the last month while our carers tried to do the best for those they cared for.

Dementia Carers Count training

We had some more positive feedback on a free training event with Dementia Carers Count. The charity runs a variety of events and it is worth checking out their website, or contacting them, to see if there is something suitable for you. You can find out more information about their training events here.

The same group member told us she had come through a tough period caring for her mum, but now she said she was receiving “excellent support”. She had all ends covered, with help from a speech therapist and an incontinence nurse. Her mum was now more settled.

She recommended sharing experiences and asking questions on the Alzheimer’s Society’s Dementia Talking Point. They say “Have you or someone you know been diagnosed with dementia? Join Dementia Talking Point to share experiences with other people affected by dementia“.

The Admiral Nurses had also provided advice and support. They say “When things get challenging or difficult, Admiral Nurses work alongside people with dementia, and their families: giving them one-to-one support, expert guidance and practical solutions. The unique dementia expertise and experience an Admiral Nurse brings is a lifeline – it helps families to live more positively with dementia in the present, and to face the challenges of tomorrow with more confidence and less fear.”

Visiting a care home (revisited)

Last time a carer had said her mum’s care home intended to use a ‘visiting suite’ – this is a room with a floor to ceiling perspex screen and an intercom system for speaking. The home had done just this. As a result, visitors could still come, even in lockdown. Meetings were limited to 30 minutes, whit 15 minutes of room cleaning either side of the visit. While not perfect, it did mean the daughter and husband could visit (separately). Our group member said the staff at the home also seemed to have developed a strong rapport with her mum. All encouraging work.

How long does it take to plug-in a mobile phone?

Another carer had a less positive experience with a care home. Their person has dementia and special educational needs. This person likes to call people they know on their mobile phone. Now this is they only real contact with the outside world. Unfortunately, the care home staff we ‘too busy’ to plug-in and charge the phone when it went flat. When the manager was questioned, she agreed that the staff were too busy. Anyone wishing to speak to someone in the home were advised to ring the home on the landline and they would be connected. When this was tried, the staff were ‘too busy’ to put them through. Tatiana’s advice was to talk to the funding authority to ensure they had a review of the service they were paying the home to provide.

Fresh air and exercise

One carer said she would prefer just to listen at the session (which is ok with us) but then she opened up about her husband, who has a whole variety of ailments. She said things changed from week to week. Last week was “brilliant”, this week wasn’t. They had managed to arrange a community physiotherapist. He had even managed to go to some exercise classes (he got bored and does not go now). Through the recent period, they still managed to get out and sample the fresh air and take a look at the Thames.

Should I stay or should I go?

Our only male carer this evening told us his wife “doesn’t understand how the world works anymore”. He said she was not clear about using the toilet and might think about popping-in for an hour or so, before venturing in – or not. He was hopeful when they had a visit from the incontinence nurse. She said something along the lines of “yes, people with dementia get like that”. And, that was it. He is coping.

Putting the clocks back

Most of us get a little confused when we put the clocks back. All of a sudden it seems it is dark in the middle of the afternoon. For someone with dementia, this can be even more unsettling. A group member said the change in the clocks and the darker evenings had made her dad more confused. His slightly obsessive behaviour had become worse. She said the family were coping and his change from a rather silent man to a chatty one, was an interesting development.

Staying healthy in lockdown: a BUPA GP’s top 10 tips

Peter summarised the advice from the BUPA site, which you can read here. Many of the point identified in the ‘Top tips’ had come up in this evenings discussions. The short presentation was aimed at reminding members that we all needed to not just understand the tips, but put then into practice.

I, for one, went off to practice the tips.

Carers Group: 13/10/20

We had a very good chat this evening about a wide variety of subjects and managed to avoid talking about any announcements by the Prime Minister (for most of the time).

The Alzheimer’s Society report: ‘Worst hit: dementia during coronavirus’

Peter gave a summary of the report. You can find the report (and links to background information) here on the Society’s web site. The Society states “Since coronavirus (COVID-19) lockdown on 23 March, an Alzheimer’s Society investigation has discovered family and friends have spent an extra 92 million hours caring for loved ones with dementia, due to the double whammy of lockdown making dementia symptoms worse, and the chronically underfunded social care system leaving them nowhere else to turn. “

The group recognised many of the issues highlighted. We have regularly discussed the effect of the current restrictions on the mental health of carers. While our members welcomed the Society’s recommendations there were reservations about the influence the Society might have on the government. There was also a view that people with dementia and their carers had disappeared from the government’s list of priorities.

Dementia Carers Count training

One of the group had been on a free training event with Dementia Carers Count and recommended that others have a look at what was on offer. We had previously had a good report on this training from another member of the group here. You can find out more information about Dementia Carers Count, their training events and annual conference here.

Visiting a care home

The pandemic rules are changing on a regular basis, so care homes have to change their arrangements, often at short notice. We were told about the experience with one home. It had now gone into ‘Pro Active Lockdown’. The result was that visits were restricted to one person outside the home seeing their loved one through a window and speaking via a telephone. Visitors were also not expected to travel by public transport so as to avoid the additional risks. From 16 October the home intended to use a ‘visiting suite’ – this is a room with a floor to ceiling perspex screen and an intercom system for speaking. Our group member intended to visit on the Friday, so we look forward to a report next time.

Case reviews

Sometimes care homes seemed to run without input on the care of their residents from loved ones. What should happen is regular case reviews. Tatiana advised members to be assertive with care homes to ensure that reviews were carried out, with input from all the appropriate people.

Where does it hurt?

When we have a pain, we generally have an idea of the cause. When you have dementia, making the link may be more difficult. A carer said his sister was resistant to taking her medication and reluctant to having a flu jab. She had a pain in her side which she thought might be caused/made worse by meds or jabs. The brother noticed her pulling a very heavy trolly up stairs after a shopping trip. The pain was on the same side as the straining to pull up the trolly. The brother was wary of getting into a protracted discussion about cause and effect. He also didn’t want to return to a discussion about his sister getting a new mobile phone. As he put it; “I haven’t got the fight at the moment”.

Avoiding potential problems

A carer said that she found that shop assistants often helped her by saying that an expensive item her mum wanted to buy was currently on-order or out of stock. This avoided an argument about buying something that the daughter considered unnecessary and/or too expensive. In effect the message was not a ‘No’ or ‘Yes’, but ‘Later’. As mum generally moved on and forgot about the item she had wanted, the issue was deflected.

Places to visit

The group had been taking opportunities to get out in the fresh air. Indoor places to visit were more of a problem. Janet said The Carers Centre seemed to have a very good approach to risk management. You can see more on their website, including a video tour of the premises, here. A carer said that Danson House (in Danson Park) did an impressive afternoon tea, photos and information here.

Not getting caught short

Not everyone is keen to talk about toilet troubles. We had a short discussion about incontinence products and free products on prescription – more information is on the NHS website here. Several members spoke positively about Tena products – their website is here.

Queuing to watch TV

What should you do when you want to watch TV in your living room, but the room is full of people and you have to wait for up to an hour to get a seat? If you have dementia with Lewy bodies you may well have recurrent visual hallucinations – this can include seeing people who are not there. Carers can help dispel the confusion, but left alone an individual can have considerable problems coping.

As usual, our members were mutually supportive, full of anecdotes and ideas. In difficult times it is encouraging to meet some of the people have recently “spent 92 million extra hours caring for loved ones with dementia”.

Carers Group: 14/9/20

This month the members were a little slow in arriving at the group. Once we got into the swing of things there was eight of us chatting away.

Places to visit

Janet gave an update on The Greenwich Carers Centre, Age Exchange and Shrewsbury House. The Carers Centre and Age Exchange had been represented at the recent Greenwich Dementia Action Group meeting and reported on their extensive work prior to their reopening. Both are using temperature “guns” to check visitors. Shrewsbury House has also completed work to make visitors as safe as they could (although they do not use a temperature checker).

Dementia Adventure: Online training session

Peter introduced the group to Dementia Adventure, a charity which aims to help people with dementia and their carers get outdoors and retain their sense of adventure. They also run on-line interactive sessions which explain dementias and their impact in an interesting and engaging way. Peter showed some of the pictures they used in their presentation.

If you want to know more about Dementia Adventure’s work click here

Their graphics illustrated the presentation. Here they explained how initially people can cope with a lot on their “noticeboard”. As their dementia progresses they can cope with fewer items. Later they may be able to process only one thing at a time.

Dementia Adventure works to maximise the benefits of nature for those with dementia and their carers.

Carers caring for themselves

From the start of this evening’s session we discussed the breaks that many of the group had arranged and the benefits of getting away and relaxing for a while. The destinations ranged from Wales to Kefalonia. Even though we tend to remain in contact with home, no matter where we are, a break can make a big difference to your state of mind.

Insights from The Alzheimer’s Show

A member told us she had rather a lot of spare time recently and had watched many of the Show’s webinars. There was much of interest – one example being the issue of inheritance tax and the possibility of changing someone’s Will up to two years after they died. You may read more about this on the McClure solicitors website’s section on ‘The Gift of Hindsight’ here.

This member also told us about a reassuring section of a presentation which said that “pacing up and down” and “wandering” were very normal for people with dementia. Our member knew this, but had been unhappy with her mum’s care home when they said that this was disruptive and that her mother might need sedation or a move to another care home that could cope with her behaviour. Fortunately, the care home manager had changed and the new one did indeed consider mum’s behaviour normal and not a cause for concern or action. Further confirmation was very reassuring.

Some of the Alzheimer’s Show’s webinars, including the one from the McClure solicitors, are still available to see on their Digital Hub here.

Take a moment to pause

Two people said they had notes on their phone to help them when life (and their mums) became a bit too much to cope with. One had: ’10 things not to say to someone with dementia’ (example here). The other had a note for when she was angry: ‘ Who suffers from my behaviour? (everyone), who benefits from my behaviour (no one)’.

Pressure

Lock-down, caring for a loved one (or more than one), covid, health problems, financial problems – the list goes on and stress and pressure tends to increase. A member said that she, and her family, had noticed that she had started to act in a way that was likely to affect her health. We talked about mental health issues which have been affecting many people in these strange time. Lack of social interaction, little exercise, starting to eat and/or drink more were all issues that resonated with the group.

We discussed what could be done. Inviting others, including family members, to help in caring could have benefits for everyone involved. Asking someone to have a role in care gives them a purpose and a feeling of being needed – something that may have disappeared recently, particularly if they have become isolated. You may have become stuck with a view of how life is panning-out. Changing your perspective, and the perspective of those around you, may be a challenge but can help you and others to break out of a rut.

If you are having difficulty it is always worth seeking out help from your GP or other health professional.

More pressure

A wait for a family member’s (not dementia related) diagnosis had stressed-out one of our Zoomers. The results had been good and the stress eased. Her husband (who has dementia) had not been able to go on the long walks he liked, due to need to keep safe from infection. This had been stressful. Now, due in part to the lack of exercise, he was not physically able to go on long walks. Our member had managed to go on a break. The husband stayed at home, with their daughter moving-in to care. The wife phoned every day and had the same conversation with her husband. It was only during the break that our member realised how much she needed to have a break.

Good news in the post

A wedding abroad cancelled, the airline cancelling the flights, freelance work drying up – what is the solution? Try something new. In this case – become a postman (post-person?). Our member had started her new job. This is completely different, working for someone, getting lots of exercise and fresh air – and doing something useful. She was smiling and looked like the change was doing her a lot of good.

Even when things go wrong, others can cope

What happens when your loved one is ill when you are away? We were give a good example – the people untrusted to care did the right thing and the arrangements made all worked well. Our carer was reassured and less stressed.

Finally, a carer told us about how well her regular carers we doing in looking after her mum. ‘They are fantastic!’

So good to end on another positive note.

Carers Group: 3/8/20

This month the group took the opportunity to meet in the first week of August. We welcomed a new member, who raised some interesting issues.

The Alzheimer’s Show

Janet and I have been watching, and taking part in, the Show’s webinars. The presenters and subjects have varied, but the quality of the sessions has been consistently high. We recommend watching the upcoming webinars or seeing the recordings of those that have passed. More information on the Show’s Digital Hub here.

At today’s Carers Group I presented a short summary of one of the webinars. This one covered the clinical trial being set up by St Pancras Clinical research. They are looking at how treating gum disease appears to have a direct impact on memory improvements for people with Alzheimer’s disease.

If you are interested in finding out more about the trial there is an online application form here.

Quiz question

What happened on 29th April 2011? (Answer later in this blog).

Visiting Care Homes during Covid-19 restrictions

The group’s new member told us about her concerns when recently visiting a relative in a care home. The staff were not wearing PPE or even masks. She asked why there was a lack of protective equipment and the reply was that: staff could not be expected to work for a whole day wearing a mask. Other group members told us about the differing approaches taken by care homes they had visited or had been told about. The differences seem to arise from the government issuing “recommendations“, which care homes then need to interpret for their circumstances. The government recommendations are here. You can read Unison’s views here.

Where’s my money?

We all get anxious at times and money worries are a common cause. For those with dementia, difficulties with memory can push money worries to the front of the mind. A member said her mum wanted her pension in cash. She had tried to explain that some of this money was needed to pay bills and that, as mum wasn’t going out, she didn’t need money. Mum still asked for her money and could become confrontational. The daughter had found money hidden away in a variety places around the house – mum’s purse was empty and she could not remember putting money “somewhere safe”. We had a discussion and other members said they had experienced similar issues. In this example the father had always (for over 60 years) managed the couple’s money and mum had been given a weekly amount. A routine of this length of time would be difficult to change, but dad had died recently and the joint income had dropped, so some change was necessary.

Two suggestions came up: recycling money, by giving it, finding where it had been hidden, and using this money when mum demanded her pension; or giving less money, but in smaller denomination notes (plus change) – thus making it appear to be a more substantial amount of money. Later in the discussions, another option came up – a dad regularly asked about income and outgoings and the family’s solution was to have bank statements to hand. This fitted-in with dad’s approach to money management and he was content.

The same mum had said that a workman had stolen a large amount of money from the house. The daughter thought this very unlikely, as the family had known the workman for years and considered him trustworthy. There remained a doubt, until the money was found hidden away some weeks later. Tatiana said that if the daughter had any concerns about financial abuse, then she should contact social services – they would be able to offer support and advise if any further action should be taken

Laptop in a trolly

A member’s sister is keen on electrical gadgets. She had considered buying a new smartphone, but had been dissuaded, as she agreed her current mobile met her needs (and because she didn’t answer phone calls, and regularly turned it off). She was slightly paranoid and concerned about the security of he laptop. As a result, she had started taking it out with her, in her shopping trolly, when she went out for a walk. Her brother had suggested this wasn’t a good idea, so she isn’t talking to him at the moment!

Greenwich council: Changes to Adult Social Care Funding

Greenwich council’s finances have been under pressure for some time. They had intended to announce changes to funding just as the pandemic hit us. After a pause, they are now sending out letters to those who will be affected by the changes. You can read an example letter from the council about funding here.

Carpets

A dad had been managing quite well during lockdown. Issues had caused concern previously when he was out and about, but recently he had hadn’t been out or about, so these problems hadn’t arisen. There was a short period when he had become disorientated, paranoid, and had refused to take his medication. This was due the upheaval caused by a major programme of carpet replacement in the house where he lived with his family. Fortunately, when the carpets were laid and the furniture moved back, life returned to a state of equilibrium.

Pictures evoking memories

Janet brought up a tip from another Alzheimer’s Show webinar: text or words can mean little to some people with dementia – whereas a picture (working on a different part of the brain) may immediately bring up an emotional response and possibly recall of an event. The quiz question above might not have struck a chord, but this picture might…

Using a photo or a picture as a visual aid can help in a variety of situations. If you ask someone with dementia if they would like beans on toast or a sandwich, they might have difficulty understanding the options. If, as well as asking them, you showed a picture of both meals, they might recognise what was being offered and be able to make a decision.

A group member – who had been a professional photographer – had used this idea to produce memory books for her mum. The books tell stories of particular times and places, and are very popular with mum. They always started a conversation about the past – well worth a try

There was some good news – two of the carers had managed to arrange breaks and were going away (not together). We look forward to a full update.

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.

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: