Once Grandma returned home after hospital visits, carers were put in place to support her with personal care, meals, and daily living. Unfortunately, this period highlighted just how difficult it can be to provide proper support when a person is resistant or when care standards aren’t consistently met.

 

Several issues emerged with the carers at home:

• Keys and safety: Carers often did not keep hold of keys. Grandma had turned into a bit of a kleptomaniac especially if keys were left laying around. On one occasion, Grandma appeared to attempt to shut a carer in the kitchen as they had left the key in the back of the door obviously this created a real safety risk, after this we had warned the company that all carers should keep the keys on them. This message was not passed on properly via the management of the care company as there was another incident the next day where a carer lost their own car keys for over 40 minutes because Grandma had taken them and shoved them in her trouser pocket. 
• Attention and focus: Carers frequently used their phones or wore headphones while they were supposed to be providing care, limiting their attentiveness. This also caused Grandma frustration when she would talk to them and they would ignore her and not respond. 
• Language barriers: Language barriers sometimes made everyday care more challenging for Grandma. Not all carers spoke English as their first language, and small misunderstandings could quickly become frustrating. A simple request for a bread roll might be missed, or a phrase like “I’ll wear your socks for you” could cause confusion when what was meant was “I’ll put your socks on for you.” For someone already navigating the challenges of dementia, these moments could feel unsettling, highlighting how even small communication gaps mattered in her day-to-day life.
• Showering issues: Grandma often refused showers, but when one was attempted, the carer used a bucket whilst she sat in the shower cubicle instead of the shower itself, they did not check the water temperature properly, and each bucket varied completely in temperatures. 
• Hair and bed care: Hair washing was supposed to happen once a week and this was inconsistently completed, sometimes due to carers claiming no towels were available even when they were. Beds were rarely changed - the care plan specified weekly changes or sooner if soiled, yet in two months, only the bottom sheet had been replaced by the carers themselves. A job they were supposed to support with meant we had to go round to ensure it was done.
• Food problems and hygiene: Carers frequently mishandled food hygiene - giving out cream that had been left out overnight by the carer before them, reusing out-of-date chicken, denying access to ice cream or frozen food saying its not there when it was (which caused even more confusion and distress to a dementia patient), or failing to understand what she wanted. Meals were often inflexible, and carers failed to listen, which caused distress.
• Oral care: Teeth cleaning was often skipped, with carers giving inconsistent explanations. Many days, Grandma’s teeth were not brushed and on occasions she would ask to do them some carers would play on her dementia and say she had already done them when she had not. 
• Communication and compassion: Carers often blamed family members for issues or dismissed Grandma’s requests, adding stress to an already fragile dynamic at times. Some even made comments implying the family were at fault for her being locked out of the kitchen, which had been done due to safeguarding reasons and she was only to enter the kitchen with the support of family members or carers. 
• Medical instructions not followed: For example, antibiotics for a UTI were not spaced correctly despite clear instructions, creating confusion and risk.
• Visit times inconsistent - Some visits were rushed - what should have been a 30 minute visit only lasted 10 minutes on occasion. Visits were inconsistent - visits were not spaced out well sometimes long gaps sometimes extremely short and odd ones totally missed, highlighting the difficulties of caring for someone with Lewy body dementia at home even with the support of outside help. 
• Carers inconsistent - Carers weren’t always consistent, which added to Grandma’s confusion and unease. Some days she could have four different carers, and the same again the next day. With so many new faces coming and going, there was little sense of routine or familiarity. It also meant carers often called us, the family, because they couldn’t find things or locate keys - usually because they hadn’t read the notes properly or simply didn’t know their way around the house. On one occasion, a family member visited unexpectedly, and in her confusion Grandma sent the carer away, later calling me to say she didn’t know how to tell who was supposed to be there. I had to explain gently that carers had keys, would come in uniform, and that she didn’t need to open the door for anyone else. It was a small moment that really highlighted how the lack of consistency made an already confusing situation even harder for her to navigate.

 

Even with carers present, Grandma was not receiving the quality of care she deserved.