For those going into care or hospital the Alzheimer’s Society “This is me” document can be helpful.
Independent Age also has information on a wide range of topics affecting older people on their website with booklets that can be ordered or downloaded.
About Dementia Careblazers
There is a lot of useful information on the YouTube video channel Dementia Careblazers run by Dr Natali Edmonds a psychogeriatrician (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, available by providing an email address. Peter did the course and thought it was good. Be mindful, however, if you give your email address to access the free course as you will get lots of emails from Dr. E. You will need to unsubscribe, if you don’t want to receive these.
A member’s dad continues to be stable. Lately he gets fixated on things that pop into his head. It can be challenging. At times he still believes he is at work and will ask his daughter why his meeting has not started. The daughter says “I’ll find out” rather than saying “I don’t know”, which seems to diffuse the situation. She has also been doing talking therapy at the Deborah Ubee Trust and said it helped her to order her thoughts.
Ups and downs
A brother is up and down. How he is varies from week to week. The sister mentioned a book by Oliver James on dementia Contented Dementia which she found helpful.
Coping with change
We had an update on a member’s mum, following her fall and stay in the Queen Elizabeth hospital. She is now in the Oaks Care Home, which she says is brilliant. They have sorted out her hair, nails etc. It’s only an interim placement. The daughter is having a difficult time finding a place she feels happy with for her mum that is closer to where she lives. Tatiana recommended making an unannounced visit to care homes, as well as arranged ones. Since she went into the care home, mum is a lot better, the delirium has gone, but she’s not stable enough to move out of her room.
Another mum was still in the QE. Three weeks ago her mum forgot who her daughter was. She wasn’t coping at home and had several falls. She was being found by the carer following the fall. The daughter is experiencing difficulties finding somewhere for her mum. Tatiana gave advice on different options, care packages and assessments.
A wife talked about her recent holiday with her husband. They went on holiday to Revitalise in Chigwall. Revitalise specialise in supported breaks. Everyone was very kind. They went to see The Lion King and had a trip on a narrow boat. Unfortunately her husband was taken ill while away and had to go to the local hospital. He had a chest infection and caught covid. His wife also got a sickness bug, but was allowed to stay at Revitalise until the husband was able to go home. She has decided that she needs respite, so for her next break her husband is going into care while she goes to see family.
Next meeting has been moved to 3rd April 2023 due to Easter
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.
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
Tony gave us his favourite tunes for us to sing and dance along. Hear more of Tony’s songs here.
Janet, Pearl, Marilyn, Dot, David, Mary, Helen, Tony and Jen – I took the photos and forgot to do a selfie : (
Everyone enjoyed the fun activities as usual.
Some of the group may have been warn-out by the festive season, but quite a few managed a dance or three.
Christabel and May from The Memorial came to visit us and we welcomed back Janice from the Carers Centre. They all had a chat to the members and managed a couple of dances.
The Reflections Friendship Group is next at Shrewsbury House on 17th January at 1pm. We have a new singer – Mark – who will entertain us.
You may now nominate Reflections as your charity when you buy items on Amazon. Click herefor more information. It does not cost you (or the retailer) anything and Reflections will receive 0.5% of what you spend.
Please note: in our uploaded photos we blur the faces of all group members. You do see the faces of our wonderful volunteers.