Empowered Conversations facilitator Clare Tallis shares her mum’s journey of moving into a care home, the emotional and practical roads the family navigated to make the difficult decision, how they knew when it was the right time, how it has helped their mum and the family as a whole – and how they are coping with the way coronavirus has changed communication and visiting.  

“Considering 24hour care for our mum brought up a range of emotions for my family not least a lack of certainty and loss of control.

“There can be feelings of guilt, worry about standards of care available, financial concerns, wishes that have been expressed in the past, differences of opinions between family members, feelings of being judged by others and many more.

“Our own experiences of care services undoubtedly shape our thoughts. I remember visiting my grandma in a care home, she didn’t have dementia, the timing and home was her choice and while the home seemed a bit shabby to me back then she seemed happy. Everyone has heard stories in the media and anecdotally from other people more often negative than positive probably. It is not a stage of our life that we look forward to but in my family’s recent experience there are positives to be found if the right things are thought about and talked about at the right time.

“One of the only certainties with dementia is that symptoms are going to get worse. But this is not something any of us want to think about. Our loved ones are going to need increasingly more support and have increasing care needs and this puts ever increasing pressure onto carers.

“My mum was diagnosed with vascular dementia five years ago. When diagnosed she lived in her four-bedroomed family home of 30 years with her partner of 11 years, Alan. She has four adult children, including me, who all live over three hours away spread across the country. Before dementia arrived she had never expressed any thoughts about her wishes for her later years and when dementia was diagnosed she explicitly said she never wanted the word mentioned again so it was not really possible to have conversations about her future wishes with her when she would have been still able to do this

“Over the ensuing years Alan gradually became mum’s fulltime carer. By the spring of 2018 she was not safe to go out by herself and she could not be left alone safely in the house.

“Mum is a social being by nature and has always enjoyed being active and being in the company of others. She was always busy doing a myriad of weekly activities, clubs and groups. Slowly, one-by-one her social life fell apart, the final nail being when her church told us they couldn’t support her attending services. Her old life was slowly replaced with increased time at home with Al, attendance at a day centre that often ended up with mum getting upset and finally a once a week carer to help with showering that had become increasingly traumatic for mum and difficult for Alan.

“Alan was stoical and demonstrated the patience of a saint, but his health was suffering not least as he was not sleeping as mum was awake several times every night. It was difficult to get Alan to share much information with us. Looking back I think this may have been out of a sense of loyalty to our mum.

“In the early stages of the disease my siblings and I had been granted lasting power of attorney for health and wellbeing and financial affairs so the responsibility for making the right decisions in the future for mum were in our hands.

“In Jan 2019 I decided that we needed to discuss future planning. It was difficult to encourage Alan to share his thoughts and feelings, but he indicated that he wanted to care for mum until she was no longer continent. My siblings and I all agreed that mum would prefer having people around all the time with the possibility to join in activities on site. Her own home had slowly become more and more isolating and she occasionally commented on her home being somewhere else.

“We decided to look into local options for 24hr care. So early in 2019 on several separate visits we all visited the two care homes that seemed to offer the care mum required. Looking back this was the most important step; we had acknowledged that care needs would increase, we had discussed what we thought would suit mum and we had identified possibilities in advance of us needing to immediately make the big step to 24hr care. I was really happy with the care homes we visited as with experience of working in health services I was the most aware of how quality of services vary greatly. I was also able to use my understanding around staffing numbers and staff training to support the decision.

“The final decision about the preferred care home felt right when weighing up both “heart” and “head’ factors. We had met staff, including managers and floor staff, residents and their families and had a chance to look at formal reports. They had a general nursing facility and a specialist dementia facility.

“Having reached the decision for our first choice care home it still didn’t feel quite the right time for mum to make the move. Alan still wanted to carry on looking after mum as long as he could but this was putting increasing stress on him and all of us, as we each travelled three or four hours at weekends to give Al some respite. During these visits it become increasingly evident that the situation was becoming unsustainable for everyone.

“When I was looking after mum on a weekend in late June 2019 mum’s behaviour became increasingly agitated and unsafe. I couldn’t reassure her and keep her safe and ended up having to call for an ambulance in the middle of the night. Mum was taken into hospital and had to be sedated to be given the medical treatment she needed. I knew in my heart that once she was medically well this was the point at which 24 hour care became the best option for her safety and wellbeing. It was only with our pre planning that I was able to have this confidence.

“I was able to contact the care home and find that they did have a room available. Mum never went back to her house from hospital. Emotionally, I think this was difficult for Alan and my brothers, but mum never talked of her house as her home from that point forward.

“Initially Alan visited for long periods daily and found the transition perhaps the hardest. Over time though he has realised the benefit of a proper night sleep and when he visits mum now he can focus on quality time not just keeping afloat. Mum settled in as well as we could have hoped and the staff proved to be dedicated, caring, hardworking and well trained. The care home welcomes and encourages visitors and it is a place that feels good to visit. Mum’s young grandchildren have enjoyed seeing grandma again and have got to know many of the other residents and staff.

“In February 2020 mum had a fall and fractured her hip. She needed surgery and I was very worried that she may not be mobile after this. Thankfully she has recovered from the surgery well and is up on her feet with the help of the carers.

“Of course now we have Coronavirus and we are unable to visit mum. This is really hard but the communication from the care home has been good. Daily phone calls to the office reassure that mum is doing OK. Occasionally one of us is lucky and get through to mum on her phone in the room but she is struggling with phone communication, so this is often just a quick hello and goodnight. The care home has been great in sending our family emails and photos of mum doing different activities. It is so hard not being able to see mum but I am so glad she is a place where she is being well looked after and has plenty of company.

“For our family, all at a long distance from mum and unable to support on a daily basis, the decision around the need for 24 care was perhaps clearer than for some families. That said there was still so many things to consider, practical and emotional and so many difficult decisions to be made if possible at the best time for mum. I am proud of how we as a family have negotiated this challenging period and I am so thankful for the wonderful care home staff who now feel like part of mum’s family.”