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”.

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