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!
Reflections 