Author: Peter

We welcomed back our carers from their month off. Two of them had enjoyed their holidays – but a couple had been stressed by bad news from home. The others had mixed fortunes too.

Behavioural issues

One carer said her mum was quite content in her new care home. The home had raised an issue about the mums persistent walking around and her tendency to pick up things that did not belong to her. The group’s view was that this is what people with dementia often do and they were surprised that the care home had considered this a problem they might not be able to deal with. Someone from the memory clinic had attended the home and prescribed “something to calm her down”. Tatiana pointed out there should be a chart of behaviour, appropriate behavioural interventions, and record of both what happened and what was the result. The carer will feed back to the group on developments.

Our second contributor told us her mum attends a day centre for vulnerable adults (not dementia specific) four days each week. For a few weeks mum has become upset, anxious and cry in the afternoon. There have been no changes in medication or procedures which might have caused this change in behaviour. Following a group discussion the issue seemed to be related to the arrangements for taking people home. Mum went on the second bus, which meant she saw lots of people leaving the centre – it appeared they were leaving her behind. Leaving her behind/alone was also an issue for the daughter when she visited her mum at home – every time she got ready to leave her mum became upset. In the case for the care home the group thought her mum might be able to come home on the earlier bus, or be in an area where she would not see others leaving the centre. Leaving her at home was managed by distraction. Both situations were causing the daughter stress and guilt. The group were very supportive as they were very familiar with the difficulties and the emotional reactions.

Another carer said her husband’s treatment at a care home had been a concern. A member of staff considered his behaviour to be a problem. This resulted in the husband being put on medication. Fortunately, a new doctor and support team had stopped the medication and were working well in managing his behaviour.

Travel

A group member had managed an extended break for the first time in a long time. He visited his son in the USA. His wife could not travel so he had arranged for her to be looked after by a live-in carer from Bluebird. It worked well! 

Seizures

The same member’s wife had recently started to have seizures. He said this was something that was more common in people with advancing dementia – which was a surprise to some of the group. You can find more information here.

Hospital problems

A highly stressed couple had finally managed to arrange a two-week break. In the second week mum was admitted to hospital with anaemia and a shadow on her lung. After three weeks those issues had been happily resolved. However, mum was kept in bed for those weeks, without any exercise. As a result she had progressed from having difficulty in walking to being unable to stand. Now at home, there was problems with carers not turning-up. Mum now slept downstairs and her daughter was looking into finding a suitable adapted car to get mum out.

The husband had positive comments about the Queen Elizabeth dementia ward. One concern was that a doctor spent time explaining the patient’s condition to them, (apparently) without realising that people with dementia cannot necessarily remember everything you say.

Ambulances and non-urgent ambulances

A wife called an ambulance for her husband. They arrived, did all the checks and said they could not take him to hospital, as he was not an emergency case. They called a non-urgent ambulance. This crew arrived and carefully copied all the information the first crew had taken. They then took him to hospital. You may be interested to read the London Ambulance Service definitions of Emergency/Urgent/Non-urgent – apparently written for confused GPs! – here.

Counselling

A carer had finally concluded that she could benefit from counselling. Others recommended “Time to Talk”. You can read about their service here.

 

See you next time,

 

 

 

 

 

A quiet session this evening – all the carers were sick/busy/abroad etc. Janet, Tatiana and Peter settled for a trustees catch-up.

Thoughts for today – more on Acceptance and Commitment Therapy (ACT)

Educational piece: What to do in a Crisis

We started the session with a second piece about resilience and the use of Acceptance and Commitment Therapy (ACT). This time we looked at “What to do in a crisis“. You may read the summary here.

Notes from Janet

• Janet had been to a Dementia Action Group meeting at the Greenwich and Bexley Hospice. The hospice team mentioned that all local hospitals have palliative care teams and patients may be transferred to the hospice for a more relaxing environment: “Palliative care aims to treat people in a holistic way to maximise their comfort and quality of life”. The hospice also has day care available. You can find out more on their site here. Some people may associate a hospice with cancer. However, the definition of a hospice is: a home providing care for the sick, or terminally ill.
• Janet mentioned the Queen Elizabeth parking hacks while your relative is in hospital – if you speak to reception they will explain how you can park all day for £2.50 or £10 for the week. This is not only a saving, but means you don’t have to worry about time running out on your ticket/rushing out to top up.
• Janet told the group about Munchkin Beakers. A carer had recommended them because they are non spill – you suck the drink out via the rim. The sucking reflex is one of the last to go, so this can work with people in the later stages and people who just like to lie down while they are drinking. The Munchkin site is mainly designed for kids, but you can see their wide variety of stock here. Supermarkets also sell these and sometimes have offers.

 

Group discussions

Eating and drinking issues

We talked about issues around eating. Members said their loved one would: one said she would only make herself peanut butter sandwiches – another just eats fish and chips every day – a third often does not eat breakfast/evening meal or does not drink all day. One person would only eat food if it was presented to her. 

A carer had placed a web cam in her mother’s kitchen. Her mum’s weight had dropped to between 5 and 6 stone. The carer found that she would eat in social situations, so had developed this in her visits.

Finding ways to encourage eating and drinking can be difficult, but there are often ways that work. Janet reminded the group that one carer had been successful by leaving snacks around the most used rooms. This led to the loved one “grazing” throughout the day – even though she said she was not hungry. Visual clues can also help.

The Alzheimer’s Society Talking Point discussion forum can provide lots of interactive advice and support. An example is this discussion on eating and drinking problem [from 2018].

Lifestyles

The discussions moved on to living arrangements that gradually become difficult as an individual’s health and mobility deteriorates. A carer described how her mother has lived with a friend for many years. They have known each other for 40 years and the friend is now over 90. The arrangement is now difficult for both of them. Lack of mobility and little understanding of dementia and other issues has resulted in a lot of anger, confusion and a lack of sympathy. The daughter feels guilty, unable to cope and is very stressed, but cannot see a way out of the situation.

The group offered their thoughts. There was also some reassurance that other members had had many of these feelings and issues in the past, but had managed to cope and provide the best support they could for their loved one.

Keeping track of loved ones

Most of us like some fresh air and a walk in the sunshine.  For those with memory problems getting out may be fine, but getting back more tricky. Members had several stories of frantic searches for loved ones, calls to the police and hospitals etc. In one case a search helicopter being put on stand-by – the “missing” person was found in the loft of their care home, sorting out Christmas decorations. Invariable the “missing/lost” person turns up and wonders what all the fuss is about. A member reminded us of her preferred tracker, which has provided much peace of mind. You can find the brand site here (there are many others available).

Continuing Care & Safeguarding

We had the latest instalment from a carer with a mum in a care home. The Continuing care assessment had gone well. There was a lot of serious people discussing serious issues, then mum was suddenly covered in poo – a bit of a reality check. The safeguarding meeting involved even more people from a variety of agencies and the local authority. Encouragingly, positive developments resulted from the meeting. The latest was that mum was happy and out of her room – previously she was becoming bed bound as the home’s opinion was that her aggressive and sometimes violent outbursts made her almost impossible to deal with.

Changes in mood

Mention of aggressiveness brought information from a carer about his wife being aggressive first thing in the morning and last thing at night. Mornings were particularly difficult as she would be very reluctant to get out of bed until around mid-day. The situation was very unpleasant. The carer had made contact with the memory clinic to discuss changes to medication and had arranged additional carer visits to help him. Arrangements seemed to be going well, so that he had planned a break for himself.

 

We welcomed Shrewsbury House turning on their central heating, as it is getting colder!