Janet’s information piece
The Reflections website has a recordings tab with songs from some of our favourite entertainers: Marks Music, Jamie’s Showtime, Julian’s Jukebox and Tony’s Tunes.
Janet has recently found a useful YouTube video channel called Dementia Careblazers run by Dr Natali Edmonds (website: Careblazers.com). There are videos on many topics most of which are short. There is a free course available too, which is one and a half hours, by providing an email address. Peter did the course and thought it was good. Be mindful, however, if you give your email address you will get lots of emails from Dr. E. So you will need to unsubscribe, if you don’t want to receive these.
Dementia together magazine is free (from the Alzheimer’s Society) or you can have a digital copy. In the latest edition they cover eye care at home. Continued eye care is very important for patients with dementia and regular eye tests are important. Specsavers do home visits, as do others.
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.
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.
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]
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
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.