Janet’s information piece
We discussed the power of words and how group members see their role.
Janet asked group members to contact her if they would be interested in the specialist dementia nurse coming to the group to talk.
Janet suggested – Why had nobody told me this before by Dr Julie Smith.
Janet’s information piece: Are you a “Carer”?
You are all carers. What do you think about the word “Carer”?
Janet introduced the piece by referring to the Goldster programme with Sir Muir Gray and his books Sod 60 & Sod 70 Aging Well. Sir Muir doesn’t like the word “carer”, he prefers “enabler” as he feels this is more empowering.
Janet ran some Zoom polls asking about alternative names for their role. She also asked if the carer switched rolls withe the person they looked after, would they be happy to to have someone called a “carer”. Generally members were content to be called a “carer”, but they would not like to have a “carer”.
The group discussed definitions: “Enabler” – make something possible. “Supporter” – to help someone. “Champion” – defend/fight for that person.
Language matters. We have a choice in the words we use. Often, “it’s not what you say, it’s how someone hears it.”
A member said it depends where you are on the journey.
Another member said there’s a distinction in the language between family member carers/professional paid carers. Paid carers are not always there when something happens. Attitudes are very different.
A daughter said her mum has paid carers. Her mum would not accept having carer. However when she rephrased it to ‘helpers’ her mum was more receptive. Her mum calls her carers “lady helpers” and is happy to accept that.
Tatiana said in her experience as a social worker when referring to someone needing “a little help” rather than needing carers, this approach was usually received more positively. After all, we all need some help sometime and it normalises the situation.
A member gave her example of when she had a stroke and had to have help. She wanted it on her terms rather than waiting for them to come and she wanted to have a sense of control. In contrast, when her husband recently needed help from the Enablement Team, they arrived and said “we are not carers who do things to you, we are here to enable you to do things for yourself”. Generally having carers is often seen as having things done to you.
Member updates [I’ve returned to using the title “carer” – Peter]
When is the right time to consider a care home?
A carer said her mum has paid carers in her sheltered housing and has recently taken a downturn. She asked when do you decide to go to a care home? Who makes the decision?
Another carer said it’s difficult. Her mum wavers from week to week, but she wants to stay at home. She will make a decision when either she can’t cope with the caring role any longer, there is a clinical decision or something happens to prompt the move. As long as her mum is safe the daughter will always have her best interests are at heart.
A husband agreed the decision is very difficult. He considers his wife’s best interests and the risk factors. As long as he feels he can look after her at home he will, as his wife is more content at home. He is also aware of her thoughts and views before the dementia progressed.
The carer who raised the subject said she was concerned because her mum wants to stay in her room and lay on the bed not really doing anything.
Another carer said her mum has a friend who comes to see her 3 times a week (paid) to take her for a walk, have a cup of tea and chat. She asked if her mum was thriving where she is? Janet recommended weighing up the pros and cons. It is worth getting someone into stimulate her. Consider if her mood has changed? Chemical changes cause an in-balance in the brain and she may need antidepressants.
Tatiana asked her to consider how her mum managed in between the carers? Maybe have a discussion with social services and ask for an assessment and discuss all the options. Mum may have lost her confidence.
A daughter was concerned about her mum sleeping more – she used to get up early and now she doesn’t. The daughter calls mum to get her up in the morning, otherwise her whole day is out of routine. She asked whether this was reasonable to wake her mum. It was felt it was a good idea to wake her at a reasonable time as otherwise it brought her distress on wondering where the daylight had gone. It also helped with keeping a routine.
Side effect of hospital stays
A wife has had a challenging time with her husband. His dementia is worse every time he comes out of hospital. He is waiting for a heart monitor and his blood pressure is creeping up. The wife is keeping an eye on it.
Keep a diary
A sister caring form a distance, keeps a diary about her brother, the things they discuss and how he is. He can get angry and frustrated as he can’t do the things he used to do. When he has a good week he is really nice.
Gyda read: “Each Moment is Precious” by Patricia A Fleming
Next meeting 13th February 2023.