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:

Carers Group: 11/05/20

The group met for our second Zoom video meeting. There were 10 of us for some or all of the session. On-line meetings are proving very helpful for people who cannot leave a cared for person or who need to be flexible with their time.

We can not have the benefits of being together in-person, but we can relax (and have a cuppa).

As usual I have summarised the discussions below and added some links to other sources of information.

Finding a paid carer

A member of the group has been looking for a good, reliable, carer for her mum. Mum usually lives alone and had appeared to be coping reasonably well. The daughter had invited her mum to stay with her at the start of these challenging times. They both agree that this is not the best long term solution. It has become clear that the mum needs more support in her home than the daughter can manage (she has a job, so she is not always free).

Looking for a carer was not easy. The preferred solution would be a carer who was paid directly, rather than a council nominee. Our member had mentioned her dilemma in a closed Facebook group and had been pleasantly surprised by the advice and recommendations that popped up.

We discussed the way forward and the possible pitfalls. We all agreed the solution lay with finding someone (or a group of carers) who mum and daughter felt comfortable with, and could be relied on to be effective carers. Our members pointed out that they had needed to refine their own searches based on their experiences. Simple questions such as: would mum prefer someone in a uniform, or would this be a bad idea? would need to be covered, as well as the bigger issues. In all cases, the prospective carer needed to be carefully checked out.

Following the meeting a carer provided this helpful information and guidance from “Which” here.

Funerals during the Covid-19 pandemic

Inevitably we discussed the current arrangements for funerals. Members noted that the “current” arrangements were changing from week-to-week. There are also differences across crematoriums and boroughs. Some offer just a basic funeral for 20 minutes, others offer longer services, music and video links. Different funeral directors will also offer differing services. At such a challenging time, arranging a funeral had become even more challenging.

Drugs

Two carers gave their recent experiences with drugs for the person they cared for. One had high anxiety, could not be easily left alone and frequently burst into tears. The doctor had prescribed a low dosage of a drug to calm her – and it worked! The carer is now also less stressed, life has improved for both of them. The second person may have dementia with Lewy Bodies and a low pulse. He was referred to a cardiac specialist, but needs to wait for an appointment, as this is not considered a priority in the current situation. His doctors have decided to reduce his medication, to achieve a better balance in his general wellbeing. There will always be concerns around medication side effects and drugs for one condition having and adverse effect on another – with dementia the use of any drugs needs to be particularly carefully controlled.

Isolation

A member of the group continues to be living in isolation with his wife. They are keeping any outside contact to the absolute minimum. They are doing well in body, but the pressures of the situation are bearing down on both of them. The wife now has very poor speech and poor understanding, communication is difficult. She finds the garden scary, so is very reluctant to step outside of the house. Evenings are trying times – without the normal daylight and exercise Sundowning is more of a problem.

Wanting to escape

In contrast to the reluctance to go out, above, we had an example of a husband who is keen to go for a walk. He watches the news, says how important is to stay-in and protect oneself – a few moments later he will want to go out and say being restricted to his house is rubbish. So far his wife has convinced him to stay at home. She says his balance has become an issue. While previously he would go on long walks, now that  would be a challenge. She also mentioned he occasionally has trouble swallowing. This struck a chord with several members, who advised speaking to the GP. For more information on swallowing problems see: Aspiration which might be considered the eighth of the 7 “A”s of Dementia.

Kings College Hospital Covid-19 testing programme

While some care homes have been badly hit by the virus and lack of testing, one of our members mum has had the benefit of being tested as part of a King’s programme. And she was negative! More good news – following some words of encouragement from the group and advice from Tatiana, our member successfully managed to resolve an argument between Bromley and Greenwich councils as to who was responsible for mum’s care. It took an “horrendous” 48 hours, but by forcing the matter up the management chain and quoting the Care Act Bromley has taken the case. The carer stress levels have dropped.

Caring for carers during the Covid-19 pandemic

I introduced an article originally aimed at NHS workers, but which seemed very appropriate to carers. It is worth reading here and following the link to tips on sleeping.

Sad news

We welcomed back two of our Carers Group members who have recently lost parents. It was good to see them, hear about their recent experiences, and benefit from their input to the discussions. We wish them well for the future and coming to terms with their loss.

Just – This

We ended with Janet telling the group about a mindfulness technique introduced to the Friendship Group last week by Gyda: Just – This

And remember “You can’t pour from an empty cup”. Look after yourself. Keep well and Stay Alert.

 

 

 

 

Carers Group: 6/04/20

We ran our first online Carers Group using Zoom video conferencing. 10 of us managed to join in, including two new members (who are also members of our Friendship Group).

The meeting could not quite give the same feeling of connection with each other, but it was a welcome chance to see members and the carers welcomed the opportunity to share their experiences. Two people didn’t manage to join us, they will have the technical gremlins sorted out in time for the next meeting.

I have outlined the issues raised by our group members below. There was discussion and mutual support from the group. The pressures on carers and those cared for, during the coronavirus crisis, was brought to the fore by all the speakers.

Keeping in touch during social isolation

We are all trying to be creative and find the best ways to keep in touch with loved ones, and others. FaceTime had worked for some and could provide the only way to see someone in a care home. One member said they had tried FaceTime, but her mum did not respond well or interact with online images. The last time they tried, mum started to cry. Our member’s husband suggested an alternative, and it worked. The daughter sent a letter to her mum in her care home, with an old photo. Her mum enjoyed having the letter and photo, the care home staff took a photo of her reading the letter and shared it with the family. They will keep up this correspondence.

Another member started by saying his wife is not able to recognise anything on an iPad. He went on to describe their changing circumstances and said he now had “cabin fever”. The paid carers had stopped coming and he not been out of the house for 10 days. His wife’s language had practically gone and ‘sundowning’ gave rise to anger. On a positive note – he had managed to arrange home deliveries, following some work with their GP and government websites.

Our usually bubbly member told us she had been laid low for three week with some illness, but thought this might not have been pre Covid-19. Her ten days in bed had the unexpected benefit of being able to switch off from everything else. She now felt ok, her ‘time out’ had given her some extra energy to cope. She had sorted out direct payments from the council and was looking to arrange a live-in carer for her mum. It was difficult to be in contact with mum, as she became distressed by phone calls or FaceTime. When the daughter visited, mum would not leave her side for any reason. The extra energy was needed now.

The desire for fresh air

In contrast to many of our group, we have one with a fit and active husband. He has been paying attention to the news and has commented about how bad the virus is. Unfortunately, he still want to go out, as he cannot retain information. When the couple have a disagreement, the compromise is for him to walk round their garden. They have been waiting for a phone meeting with the Bexley Alzheimer’s Society, while they have been told they are moving up the queue, there are many other people also needing a formal meeting.

The story so far

A newcomer brought us up to speed with her journey. Mum had started to forget things, but dad was in denial, as a result it took two years to get a diagnosis. Recently dad had also been diagnosed with dementia, then died unexpectedly. Mum often forgets he has died. One day she got dressed for the funeral, she did not remember it had taken place the week before. Mum is independent and likes to cook on the gas cooker, this has caused a few problems. She didn’t like the microwave which “blew up” and she had given away the slow cooker. The daughter had become used to living alone, since losing her husband several years ago. She now has her mum to look after and her mother-in-law who is recovering from a broken shoulder. She is working at maintaining time for herself, to help her cope.

Lack of get-up-and-go

Our second newcomer told us her mum is deteriorating. She doesn’t want to do anything. She does not drink, prefers not to change her clothes and refuses to take them off at bedtime. The daughter is being worn down by her caring role, but has a supportive family which helps a great deal. Another group member empathised and said she had had counselling to help her deal with her issues. It had helped and she felt she was in a better position to cope now.

Lock down

Care homes are not allowing visitors. A member said her mum was deteriorating. She is unable to walk unaided and the home had decided only mobile people would be allowed into communal areas. Mum was therefor isolated and not exercising at all. The daughter will be contacting the care home manager to discuss how her mum’s situation may be improved.

Sad news

One of our Carers Group members had wanted to be with us at this meeting, but did not make it, we hope to see him next time. His dad passed away in a care home last week, having contracted the coronavirus. Our thoughts are with him.

 

Stay strong.