Author: Peter

We welcomed a new member to the group. She brought up some familiar challenges, but in a new context. Our discussions provided more personal insights, built ideas and options based on experiences, and gave mutual support to a stressed but resilient group of carers.

Visit to a dementia ward

Janet led the session off by describing a recent visit to the Queen Elizabeth hospital to see one of our group members. He had been taken ill on a trip to London, spent some time in a central London hospital, and eventually been found a bed in the QE. The ward lacked any features of interest – lots of white. There was six people in the ward, five of whom had dementia. The sixth person considered he had a role: to keep an eye on everyone else – he was a bit hampered because he could not walk at the moment. Our member was required to lay down or be in a close to laying position, because his very low blood pressure meant raising his head resulted in dizziness and led to collapse. So, he lay in a blank room, unable to move, with limited interactions with anyone. His dementia is quite advanced and his circumstances did not help. He was pleased to see visitors. Janet talked to him and massaged his hands with lavender. After a visit of around 30 minutes of rather rambling comments and slipping not sleep, Janet said goodbye – and he said “Goodbye Janet”. A complete surprise, as Janet had only mentioned her name when she first arrived. Even though he appeared not to be interacting with Janet, she had clearly made a connection. Making the effort to interact and communicate can have great benefits.

Normal behaviour

We revisited the issues arising from a mum, in a care home, who likes to walk about and occasionally picks up things that do not belong to her. The group agreed this was ‘normal’ behaviour for someone with dementia. Unfortunately, and rather inexplicably, the care home does not consider this ‘normal’ and are thinking about asking her to leave or looking at drugs to control her. The position of the home on the boarder of two boroughs has recently caused the home to change to Bromley NHS services rather than Greenwich. Mum’s GP has changed, as has the memory service. It is unclear where this is all going and the uncertainty is upsetting the daughter. Tatiana reminded the group about good practice, including a support strategy with behavioural plan. The daughter will, once again, push for the best support for her mother.

Flying south?

Our new member presented an interesting scenario. Dad had recently become extremely agitated on a bus home. He was distressed by the claustrophobic bus and because he did not recognise any one else there (including his wife). With this background, she then said her mother was planing to take her father back home to see relatives. The trip would include a 12 hour flight and a prolonged drive at the other end. We discussed the pros, the cons and the alternative ways for keeping in contact (including Skype/Facetime). The daughter is clearly in a conflicted position. Our group generally thought such a trip was not a good idea! However, one group member who supported a “last” trip home, was someone who had been born and brought up abroad. As usual, the varied experiences and histories of group members provided a wide perspective of views, ideas, and options.

Pneumonia and Septicaemia

Another mum had recently been admitted to hospital with the above, and survived! The professionals cannot [at the time of the meeting] agree on a care plan. The daughter had been doing 8-hour “shifts” visiting the hospital. When out of hospital mum cannot cope with the daughter being out of her sight. A stressed daughter, is now even more stressed.

Finally, a diagnosis

A wife had got the expected diagnosis for her husband that had been pending for months. Mixed dementia – he does not want drugs – and he has been discharged by the memory clinic. They are expected to just get on with life. This is a common experience. We discussed what this meant and the need to live the best life in this moment.

Thought for today

We had a full session discussing a variety of subjects.

Behavioural issues

A carer’s wife had become increasingly reluctant to wash and change her clothes. She is reluctant to go out. Other group members had similar experiences with their loved one. Techniques were suggested such as: running a hot steamy shower to entice use; using dry shampoo; finding someone who the person is sufficient relaxed with for personal care. This led to other examples – while it was difficult to get one person to leave home, it was even more difficult to get then to return – they said “It’s not my house. Why would I go in there“. A very reasonable argument, when you do not remember living in the house in question. Another example was someone who would not have his hair cut. This was not completely true – he would only let one person cut his hair – this did not seem unreasonable.

Transition to a Care home

A group member had achieved agreement that her mum would continue to be funded under the Continuing Care arrangements. Her care home was good, but mum did not like any changes which gave rise to stress all round. Mum’s avoidance of change also meant that a when her daughters faced the test of clearing her house, they also had to deal with all their father’s belongings – he had died several years ago, but everything had been kept.

Hair care and a mattress

A group member, who continued to try to come to terms with the difficulties her husband is facing and the changes to their lives, gave us some interesting examples of change. He is keen to be tidy and his OCD coupled with dementia has led him to tidy a wide variety of household items. When his mattress needed to be moved, there was a big reveal of all the items that had gone “missing” in recent weeks. He is also keen to ensure his hair is in good order, so he will use anything in a spray can for the job. Another example of someone’s logic being quite reasonable, but the solutions are a little unorthodox.

Who’s in the mirror?

Two members have loved ones who believe pictures move, the television is real, or that they have a friend who lives in the mirror. Their Lewy bodies dementia is fascinating, can be working and/or reassuring. You can read more on the NHS web site here.

We also reviewed many of the issues we have discussed in previous sessions. Tatiana’s handout, from last year, on coping with Christmas was snapped-up by group members. It is here.

See you in the New Year,