Hayley Smith, Networking Manager at TextCare, talks about her fear, guilt and relief with her Dad’s
Hayley joined TextCare in February 2017, with a wealth of personal experience in living with dementia. Cliff, Hayley’s Dad, was diagnosed with vascular dementia in June 2014 but sadly like many others, went undiagnosed for several years. While unknowingly reaching the mid-stages of dementia and living alone, Cliff’s needs had progressively increased and he had become reliant on homecare visits. Hayley sought help from a private care company, social care visits and meals on wheels to ensure that his wellbeing was cared for.
Cliff was unaware of what the dementia diagnosis meant for him due to the stage that he was already at. Hayley however, was filled with a plethora of different emotions. “I was relieved that he had a formal diagnosis as I had been told by his GP for such a long time that he had depression and anxiety but I was also scared of what the future would hold”, Hayley explained.
Although Cliff was able to live at home alone for many years with his dementia, doing simple tasks like making a sandwich or a cup of tea, washing and dressing became more of a challenge as the illness progressed. This left Hayley feeling “constant guilt and worry” and it was increasingly difficult to leave her Dad at home alone, comparing it to leaving a very small child alone in a flat. “I would close his front door of an evening and hope that he would be okay,” Hayley admitted. “I used to worry as I had no idea what he was up to through the day and night when I was not there”.
Hayley was eventually left with no option but to unplug her Dad’s electric oven and hob as it became dangerous for him to attempt to cook. Cliff would often burn food or burn himself, or would try to eat food that had not been cooked thoroughly. This decision was not taken lightly by Hayley, “It felt like I was taking away his liberty but we had to weigh up the risks associated with keeping it plugged in”.
One of the most evident things that Hayley noticed, was that her Dad became increasingly isolated and did not like to venture out much unless he was with someone. As time passed, Cliff would spend many hours in his home alone in silence. “He would often forget how to use his TV and the remote and would just sit there looking at a blank TV. It was not possible for me to know how many hours he spent sitting like this.”
It also became apparent to Hayley that her Dad was spending a lot of his time during the day in bed, often finding him there when she would arrive at his home. “He was not able to communicate with me what time he got up in the morning or if he had slept the night before. I did not know if he slept through the night or if he was up wandering about.” Hayley professed. As a result, Hayley would always encourage her Dad to get out of bed, concerned that he was depressed and not realising that he could have simply been tired.
Worried and frustrated with her Dad’s progressive loss of abilities and independence, Hayley felt helpless. Despite being in contact with housing, social care, private care companies, a GP, memory service, consultants and the hospital, Hayley was not made aware that there were any products available that could have helped her Dad to live independently for longer.
“In my view I really believe that a product like TextCare would have given me peace of mind at times when I couldn’t be with him. I could have seen if he was up and moving about or if he was in bed. I would have had a better idea of what he was doing. I used to feel so much guilt that he was lying in bed all day but I didn’t know it was because he had been up and moving around all night, so it would have been natural to sleep during the day.” Hayley explained and continued;
“If I had a better understanding of my Dad’s normal routine, we could have negotiated the best time of day for homecare visits. I believe that this would have meant that he could have lived at home for longer. Person-centred care is crucial, it must fit the needs of the person for it to be worthwhile and meaningful. When you are guessing what someone’s needs are, it is not going to be of much use.”
Hayley’s Dad was at the moderate stages of dementia when she and her family made the decision to move him into a residential care home. At this point Cliff was not able to carry out any self-care routines and needed assistance with the most basic of tasks. Hayley’s health was also suffering. Whilst caring for her Dad on a daily basis for a very long time, Hayley was working full-time and had a family to care for. Understandably, Hayley confessed to being “physically and emotionally drained.”
The decision to move Cliff into residential care was also supported by his social worker, providing much needed reassurance for Hayley. Initially after the move, Cliff seemed to really ‘perk-up’. Hayley believed that this was because he was getting the help that he needed together with being mentally and socially stimulated. Cliff’s communication abilities also improved for a while and he always spoke positively about the move to his new home during this time.
Hayley concluded with some advice for anyone who has had a loved one diagnosed with dementia:
“A diagnosis of dementia can cause a range of emotions, commonly fear, anxiety and guilt. It may also come as a relief; I know it did for us as it felt like someone had at last taken our concerns seriously. The journey of a loved one living with dementia can be an upsetting and difficult journey but it is also one filled with many fulfilling and rewarding moments. It is a journey in which you will learn so much about yourself and will grow as a person.
Try and get as much support for yourself, it will help you to cope better. I cannot stress enough that your health and wellbeing is as important as the person with the diagnosis. Get support from friends, family and colleagues. Speak to organisations such as the Alzheimer’s Society, as they have a host of services available to make life better. Arm yourself with as much information as you can. Talk to people that are going through the same thing. Live well”.
As Networking Manager at TextCare, Hayley aims to make more people aware about the many benefits of using TextCare for people living with dementia. Over the past few months, Hayley has been regularly attending dementia cafes and speaking to people living with dementia and their loved ones.