What s your experience?

Transcription

1 What s your experience? Martha Ed s Wife Sarah Mental health Nurse/ Dementia champion Josh Mental health Nurse Mr Hayes Isobel s husban d

2 Insights Even family care givers who have a strong bond, tend to be isolated Most challenging behaviour is that family member is coping with the fact that loved one may not be telling the truth Lack of community for care givers (or access/awareness of). No desire to engage in a community of carer givers. Lack of two-way conversations, not creating any new fun memories, living in the past Difficult to give permission to go on holiday and relax Focus is on the loved one with dementia not the family caregiver Lack of specific tools mentioned 2

3 Say & do Told Ed a story about the teddy bear Asks yes / no questions to Ed and creates conversation with him even if he s silent or whispers inaudibly A cup of tea and biscuit deals with challenging behaviours Laughs and jokes with us and Ed, and doesn t get emotional during our conversation Meets up with group of widow friends now and again Care home couldn t get Ed a wheelchair so fought to get him one herself Likes to repeat questions to Ed so that he remembers things eg. birthday and holidays together Antibiotics hadn t been delivered to the care home so she went out of her way to phone pharmacies to get them Ed doesn t like her leaving so she says she popping to the shops Gets Ed comfortable before talking to us and Strokes Ed as he snoozes in bed Hear One of her friends (recently diagnosed with dementia)calling her with repeat conversations. Martha is patient because she understands the situation Ed has called her mother Ed s always sworn and sometimes swears to other residents and tells them to shut up Doesn t talk to or hear about other carer s experiences Martha Ed s Wife Think & feel Experience hasn t been as bad as she first thought it would be No one will buy me a Valentine s gift anymore Feels sad seeing some residents don t get visitors He is well looked after with 1:1 care every day Likes it when staff make a fuss of her Worries most about his safety and that he is well dressed Doesn t want his children to visit they wrote in Ed s care plan that they did not want to be contacted Ed had an infection recently and was really worried this was the end. Her partner of 50 years needing assistance to eat and move from chair to bed Only her partner and nurses attending him when visiting the care home At the beginning, feared that Ed would be sectioned but now sees he has a lot of freedom still Ed was at first racist towards carers at the home but has since got used to non-white staff Her partner clean and well dressed Ed 3 times a week

4 Says The residents in the dementia unit every day Families who are supportive, others who are in denial, others who do not care and never visit Memory boxes disappeared with the refurbishment of the home Events are a great way to bring relatives and residents together Last weekend s garden party was great fun Families tend to use google to find out more about dementia Thinks Sarah Mental health nurse and Dementia champion Person-centred care really makes a difference to people. As a dementia champion, she is expected to train other staff. However, training other staff is time-consuming and tiring, especially given the high turnover. Feels a bit disillusioned. Complaints from families who believe their loved one when they say they have not eaten for weeks Hears

5 Says & does Families who are not present or supportive towards the care givers Families with strong bonds before dementia, who are more likely to stay close when dementia progresses Tries to provide education to families of residents with loved ones Josh Mental health nurse Complaints from families in denial who do not understand or know how to cope with dementia Hears Thinks If families do not have a strong bond, it will be difficult for them to keep in touch with their loved one with dementia Education has made a difference in the way he sees and cares for residents with dementia. Believes it is the most important help he can provide to families.

6 Says & does His wife no longer able to hold her neck, speak or feed herself, slouched in a couch His family regularly Visits his wife twice a day to be with her for lunch and dinner. Helps her with feeding Spends time in her room after meals stroking her hand Likes to be alone with her Mr. Hayes Isabel s husband He doesn t mind coming to be with his wife twice a day His wife mumbling quietly Hears Thinks