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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:

5 Tips for carers

You may Read this leaflet here:

5 Tips for those with Dementia

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.