Author: Peter

Valentine’s Day

Introduction

Janet’s introduction was in response to the increasing numbers in the group and the limited time for discussion. In future, at the beginning of the meeting, Janet will ask if anyone has anything specific to bring up, or has any questions. These items will be discussed, then she will go round for updates. If time runs out Janet will make a list for next time.

“What I wish people knew about dementia“

Janet talked about Wendy Mitchell‘s second book following on from ‘Somebody I used to know’.

• In the introduction she talks about how dementia affects the senses, emotions and communication.
• When planning meals she says it is important to consider the temperature of food, hot meals can be difficult and challenging.
• Chewing food becomes laborious and some one with dementia may forget to chew enough.
• Using a knife and fork – two motor skills at a time become hard.
• Losing sense of taste.
• Eating the same meals over and over again – you may not remember what to have eaten but you may remember what you like.
• These things can be difficult for those who don’t have dementia and the carers – try not to take it personally.

The group discussed their experiences:

One lady eats food that has gone-off, soft foods in general and raw potato, chillies, whole lemons and oranges. Her husband wondered if she enjoyed the texture. Janet suggested that carers need to become become detectives. Sometimes things work and sometimes they don’t. It’s important to get them to eat something nutritious and a variety of foods is important. Janet added that in working out ways to succeed you have to be canny and clever.

Another carer has been buying meals for his sister from Tesco, which she now gone off. So, he got M&S meals. She says rice makes her choke and she will only drink almond milk now. She is losing her sense of taste and is becoming very faddy. She also has a ‘thing’ about germs. Janet added that the book said the china that is being used can make a difference. The colour of plates is important – mashed potatoes on white plates are tricky, there needs to be a contrast between the food and the plate. 

A wife said that her husband enjoys his foods and eats obsessively. Even if he’s had a meal he will go and make a sandwich. He did have a choking incident in which she had to put her finger down his throat to release the piece of meat. She tried chopping up his food but he hated that so she has stopped doing it.

Cruising

Following up on a previous discussion on a husband’s love of going on cruises: Janet had suggested the wife contact SAGA to discuss how they could help. They had a wonderful response back and have been invited to go on one of their ships for a tour and lunch, possibly in the summer. The husband’s face had lit up and it was a joyous moment. Hopefully, it will be in July when they celebrate their silver wedding anniversary.

Mobility

A wife spoke about her husband’s mobility. He is eager to dance or hold on to each other at Reflections. He has an air of helplessness even when sitting down. Recently when she was out he went on a bus – no stick, and went to the shop. She wondered – should she let him go out by himself? Is she being over protective? He has started a mobility class (a group of 3). Maybe this will help. Janet suggested maybe the wife could take her trolley and go with him or discreetly follow!

Issues

A sister wants to change the her doctor’s practice. She had seen a locum, who need to have a prescription counter signed, so went out of the room. She got it in her head that all the doctors leave her alone in the room. Her family have managed to get that all sorted out. The sister wants to maintain her independence, but this puts strain on her family: she visits on the wrong day; she had an argument in a shop over a cash/debit card; and she loses or forgets passwords.

Her sister-in-law said they are asking for her to have a referral to the Memory Clinic. She is not getting up until midday, then taking her medication all at the same time. She doesn’t recognise the time or remember the day of the week. She feels she ruder: she says what she thinks – her filter isn’t working properly. She says she gets memory fog and she is aware she’s not right. These are things she will be able to talk about this when she has her review.

Question

We had a question sent in by a carer who could not attend this evening. She is going away with her sons in March and is finding it difficult to find help for her mum. She thinks it’s best to keep her mum at home and have someone to supervise. A carer suggested Bluebird Bexley agency. He will send some links. He said it’s more about the people who work for them not the agency. He was fortunate to find the right person for his wife. Janet- suggested the Miss Mardle agency.

Reflection piece

Gyda read – “Our lives are full of fragments“.

Next meeting 21st March 2022.

A New Year

The Carers Centre & Memory Clinic

Janet told the group that The Greenwich Carers Centre is closed, including the cafe. You can phone for support. The Memory Clinic is also closed. There are no face to face appointments. You can get in touch by phone, but do accept delays. There may be Zoom meetings and, in exceptional circumstances, a home visit.

Where is mum?

While a carer was unwell over Christmas time her mum had some odd moments and did some odd things. She kept crossing over the road looking for her mum.  Fortunately, the neighbours know the situation and gave help. Also, she is phoning the daughter and asking where her mum is. The daughter asked the group for advice on how to answer and soften the blow.

Janet said the mum may feel unsettled and her mum means security and stability. Ask her what do you want to talk to your mum about?

The group agreed any comments about the mum would need to be handled carefully. It’s about balance. Avoid lying and steer the conversation somewhere else. Speak to the neighbours about deflection conversations about mum. 

Long separations

Another carer hasn’t seen her dad due to COVID and he has a cold at the moment.

Janet advised her to speak to the social worker about her circumstances and visiting. The daughter has some time off in February and  hopes to sort things out.

How to choose what is best

A carer explained that her husband has had dementia for the last four and a half years. The last few months he became bad tempered and suspicious, so he went into respite. He spent several weeks in hospital and then could not come home. He has been in interim care for the last few weeks. He now thinks it’s his home. His wife misses him dreadfully and grieves for the 60 years they’ve had together. It’s very painful and when her heart rules her head, she wants him home. They have four children with differing views on what to do. She now feels she is battling on her own.

The group discussed the challenges of trying to look after the husband at home. There would be a need for day and night carers. The husband would need a bed downstairs, but the bathroom is upstairs. The practical issues were great, but the group emphasised the impact on the carer and the rest of the family. They suggested writing down the pros and cons to yourself and to her husband. Thinking about of her health now and before – how much can she cope with?

Germs and homes

A brother explained his sister has developed a fixation on gems and getting ill. She had toothache and her face became swollen, it was eventually sorted. Her brother is going to buy M&S dinners as she says she’s not eating. She has a lovey flat now, but wants to move back to her old home (which is no longer there). She even signed up for a flat which the brother had to sort out. 

Cruising

A husband likes cruising and it has become an obsession, looking at brochures etc. But several times he has booked a cruise on his own and didn’t tell his wife. She has had to cancel and inform the company of his dementia. She feels awful but knows they couldn’t do a cruise. He wouldn’t be safe. She doesn’t know if he understands. She hates being the policeman and it must be horrible for him.

Group suggestions were: getting out old cruise photos and appropriate meals; tell him you’ve booked one for the end of the years and maybe he’ll forget. Arrange a visit to a cruise ship while in dock for a day’s visit. 

Another carer said her dad had an obsession with a singer and booked a trip to Spain to see him. His son had a long conversation with him and eventually he agreed he would need to stick to watching his videos of the singer. The dad sulked for a couple of months, but it worked. 

Next meeting 14th February 2022.

Our last meeting of 2021!

Saying “no”

Our first speaker has had a tough few weeks. Her son is away at the moment, so she has been caring for her mother in law too – organising everything and getting ready for Christmas. She feels like it’s ground hog day. Her Mum is ok and oblivious to everything. Janet said it’s easy to get wrapped up in what you are doing and she needs to say no to people and recognise boundaries and priorities her time. The carer feels like she needs a few days away. 

Chrismas care home visits

Our youngest carer saw her dad the day after her mum’s birthday celebration. She said he had no eye contact and wasn’t really present. She read to him about Russian missiles and he fell asleep. She has been told there will be visiting restrictions over Christmas period due to Covid and staffing problems. Janet said care homes can forget it is the person’s home. She advised working with the local council to explain the situation and work with the authority funding the placement. Tatiana suggested going via social services, ask if they have had a review and share her concerns. The carer feels like it a constant battle all the time to see her dad. She said it may help for requests for change to come from professionals rather than a family member

Confusion

A father-in law has become slow to respond and ‘woolly’. He takes time to come to. The carers were going to report that he was getting out of control with his meds. He has been “discombobulating” his phones. He didn’t respond when she called him a few weeks ago. He is chaotic at times. She is keeping an eye on him and will take him out for a Xmas meal. He is a hoarder and lives in chaos. Her resources are drained and she needs to have a conversation with his son. Janet said his safety is concerning (he is a member of the Friendship Group).

Plan for the future

A husband said his wife had been gently declining, but there is now a faster decline. She has less energy and difficulty standing and stepping. They go for short walks and she had been relatively stable. He said that she will look at the stairs and can’t work out what to do. She is sleeping more in the day and more at night when she used to be awake. Janet asked how do he gets her up the stairs? He said it’s getting harder and she risks falling. Janet advised thinking about planning ahead and how to manage at home. He said the consultant has been quite helpful. The nurse who comes round didn’t come back with ideas. He is taking each month at a time. He hasn’t got any respite time planned at the moment. His Mum is 97 and is in hospital at the moment. He is hoping to visit her in the New Year.

Dad ok, mum not so

A daughter said her Mum has mixed dementia. Progress was quite gentle until 4 months ago, then she began sleeping from 1 until 4 in the afternoon and it frightened her – she has now accepted it. The carers come to help with meds. Mum lives in a retirement close. She is having difficulty with cooking and has support with this. She now can’t use the phone, turn on the TV, the washing machine, or the cooker. They have a WhatsApp group to keep an eye on Mum. The 3 sisters are now struggling and need some calm – it’s chaotic. 2 weeks ago her Mum was suddenly confused. Subsequently this involved hospital visits and consultations with GP. The result was a diagnosis of Lewy Body symptoms and Parkinson’s. The medication now need to be reviewed. The carer is distressed because her Mum is distressed. The family are looking at private care as her Mum needs care through the night. Janet – mentioned Telecare to add a door sensor to the existing service (see the Greenwich Telecare information here). A family member can record  an appropriate message. It’s about managing risks. Mum likes to have a handbag, but the daughter is concerned about her carrying valuables. Janet suggested giving her the handbag, as it’s important to Mum, even if it is empty. 

A new habit

We heard about a dad. He has developed a new habit. He closes his eyes and won’t talk to you. He’s not doing the filing as much as he used to but latches onto things like bank statements. It was suggests that it could be ‘sun downing’ as dementia can be affected by lack of light and the shorter day light.

Are you ok?

Finally, we were told abut an old member of the Friendship Group. His memory is worse. He recognises his daughter but not her name. His wife said she has off days but she is ok. 

We hope you have a good Christmas and send best wishes for the New Year.

Next meeting 17th January 2022.