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.