Tag: Reflections

Member updates

A lack of understanding

A couple said things are not any easier for the person they care for. She has been to the Memory Clinic. The drug she was prescribed was only taken for 4 days. Once she read the information that came with the drug, she wouldn’t take it. She is also becoming forgetful and can use inappropriate language. Her brother is worn out by it all and is trying to step back a bit. Tatiana asked what are the medical next steps? She is being monitored, with an expected appointment in 3 months. Tatiana then asked if they had been given any recommendations and advised emailing their concerns, asking what can they do and is there another meeting planned. Janet said the person needs an mental capacity assessment and needs to be made aware of the consequences of not taking their meds. The couple think she doesn’t understand. Tatiana advised going back to the Memory Clinic consultant/ lead  professional with their concerns.

Goodbye

One of our longest standing group members came to her last meeting. Her step-father is moving to Beckenham with his son. They are looking for assisted living for him. They are also in the process of clearing the house (40 years of “junk” – he is a hoarder). She said the group has been instrumental in supporting her Mum and her step-dad.

Coping

Another carer said his mum is fairly happy at the moment and enjoys life as much as she can. He has been on a “Coping with dementia” course run by MIND. It was very good. He is thinking about moving to a ground floor flat, so that he could use a wheelchair and take his mum outside as she is largely bed bound. Janet suggested speaking to Donna Godfrey, the specialist dementia nurse, for some support and advice.

Unsafe discharge from hospital

Another carer reported her mum had a fall and is in Queen Elizabeth hospital. Her daughter is unable to visit, as she has Covid. The mum was having trouble swallowing. There was concern when the son of the carer witnessed his nan being force-fed by a member of the hospital team. When he raised it as his nan’s cheeks were full of food, the reply was, we are very busy so I need to get this done. Janet & Tatiana suggested raising this with the hospital as no matter how short of time the team are, someone with swallowing issues cannot eat any quicker. Mum is currently not mobile and the QE plan to discharge mum with a care package of 4 visits – the group thought there was an issue with this being an unsafe discharge, putting mum at risk. No one in the family can help currently and the daughter can’t help 24/7. Janet advised speaking to the dementia nurse, Kate. The daughter wants her mum to have an interim placement to see if her Mum can further recover. Tatiana asked if there is a hospital social worker involved. Not as far as the daughter knows. Tatiana felt from what was said, if the hospital were to go ahead with a discharge on Friday she considered it would be an unsafe. Tatiana advised emailing Kate and copying-in the social worker in the community who did the earlier assessment, stating if the discharge goes ahead it will be unsafe. [update: the email did the trick – the discharge team agreed to reassess mum and she has now been assigned a social worker – the daughter is very pleased]

Holiday

A wife told us she and husband  are ok. Next week they are going on a respite holiday with Revitalise, a place for people with disabilities and their carers

Feeling lucky

A new group member said he was feeling fairly lucky at the moment, given all the issues he had listened to this evening. He was interested in the course from MIND and will look into booking.

Next meeting 13th March 2023.

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.

Sleep

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.

Next meeting 13th February 2023.

Janet’s information piece

Progress with new Alzheimer’s drug lecanemab

In top-line results from a phase 3 clinical trial called Clarity AD, lecanemab has been shown to slow down the decline in thinking and memory skills in people living with early Alzheimer’s disease by 27%. 

• Lecanemab is a drug that targets amyloid protein build-ups in the brains of people living with Alzheimer’s disease, marking them to be cleared away by the brain’s immune system. 
• Clearing away these amyloid protein build-ups has been long explored as a potential way of slowing down how quickly a person with Alzheimer’s disease’s memory and thinking skills get worse – but clinical trials have struggled to show any beneficial effects on symptoms in the past. 
• This news represents a potentially game-changing step towards treatments that can slow down the progression of Alzheimer’s disease in the UK.

The trails will continue. Careful screening and targeting of suitable people is needed and there are some concerns about side effects. The NHS will await clearance before the treatment is offered to patients.

Member updates

Support

A carer said her dad seems to have perked up. He has been given meds so he doesn’t get up so much in the night. Her Mum has good and bad days – mainly not wanting extra support. She gets irritable with him and it’s now more difficult bathing and dressing him. It’s a lot to come to terms with and it’s taking its toll on her. Her mum is concerned at the idea of getting someone in. She thinks maybe if social services come in they will take him away. She believes it’s her duty to take care of him. Tatiana said social services are there to help and work together to support them both. If something happens to her mum it’s important to have something in place. Try it for a while and make decisions from there. Have an assessment list.

Another carers said she can understand what she’s up against. Her mum isn’t 100% happy with her help, but it’s for her own benefit. Janet said you can make suggestions. Some people don’t make a decision until there’s a crisis. Volcare was recommended by a third carer who finds them excellent.

Motivation

A male carer tries to motivate his wife who is in the early stage of dementia. She has had a sleep monitor and they are waiting for the results.

It’s cold out there

A daughter has had a tricky week with her mum turning off the radiators. She lives alone and is afraid that she will go to prison if she can’t pay the energy bills. It’s like a fridge in her home.

Safeguarding

Another carer said her step-dad has no central heating, only free standing oil heaters with trailing cables. She is trying to influence him to go into assisted living. His sons are prime carers, but it’s a limbo situation. He is very isolated. Bluebird care comes three times a week to prepare a meal, wash up and put the washing on but she doesn’t know about other days. Janet said that if it is a safeguarding issue she should speak to the sons about it. Tatiana suggested discussing options with social services, to speak to Brian and support him in his decisions.

Next meeting 9th January 2023.

Notices

• Janet introduced and spoke about the upcoming Self Care Workshop.

Member updates

New members, old problems

A new member of the group supports her brother in Australia. He has limited support there.

Another new member  cares for her mother who is living in sheltered accommodation in Eltham. Her mother has been independent, but is now worried and scared making excuses not to go to the communal area. She is also not drinking enough. A regular member spoke about his wife and the struggle to keep her hydrated. He suggest suggested fruits, ice cream and jelly. Janet suggested there may be someone in the home that could encourage her mum and to contact Social Services to do an assessment. Janet said her thirst receptors may be affected. People can get to a point where they feel unsafe, thinking “If I stay in can be safe”. Another carer had to go with her mum to the Queen Elizabeth hospital recently as she had become dehydrated.

Here is a link to Good Hydration and how to ensure that someone is not becoming dehydrated. The Dementia UK website has lots more useful information.

Not taking medication

A sister-in-law spoke about the person she cared for refusing to take her meds as she had read the side effects on the leaflet.They are trying to contact Monica Crugel (at the Memory Clinic) for a second opinion. They have an appointment in January. The person with dementia hasn’t taken her meds for about three weeks now. Tatiana said if they were worried about the situation they should ask to speak to the doctor again and put it in writing. Ask for a mental capacity assessment and what needs to be done – copy it all over to Monica. Janet recommended asking for a written summary of the meeting.

Feeling low

The next speaker said her dad is feeling down at the moment and has low energy. He is not responding to the usual things that they do. He doesn’t go out as much.  People do come to see him, but it upsets him and he gets aggressive and says he’s going to bed. Another carer said unexpected guests can unsettle her mum too. She has a friend who comes to see her three times a week. Janet asked if he was on antidepressants as he may need a low dose.

Mobility

The next conversation covered a mum who has mobility issues and how she shakes if she opens the front door. The son said he has good and bad days, but focuses on the good.

Time for a holiday

Finally we were updated about a mum who is in a care home after a lot of problems. Sadly her mum no longer recognises her. The daughter is going on holiday for the first time in four years.

Next meeting 12th December 2022.