Hayley Guglietta helped look after her mum, Patricia Norris, at home during the early stages of dementia. She then went through the process of getting long-term care for Patricia. Hayley now volunteers for Dementia Canterbury. Here, Hayley shares some of the lessons she has learned.
You and your dad spent 5 years looking after your mum in the early stages of her dementia. What can you tell us about that time?
It was sad and challenging watching my mum slowly decline. Some stages were more difficult than others. For me, two of the worst were when she was still aware and you could see the stress on her face, especially in large groups trying to keep up with the conversations, and the other was when she lost continence. That was when we knew it was time for her to be somewhere that could deal with that better than we could as she did not like us to do her personal care. On a positive note it was a bonding time for me to be involved in my mother’s care.
Do you feel you got the help and support you needed? Where did the help come from?
Dementia Canterbury were fantastic, from the social workers to the volunteer carers. When it was time to find a place, Eldernet were fantastic in pointing us in the right direction, and both Admatha and Fitzgerald House were wonderful facilities.
It must have been hard – what were some of the biggest frustrations?
I wouldn’t have used the word frustration at all. The hardest thing was the transition from being at home to care. It wasn’t until she had settled in that we could see it was the best thing for everyone.
There must have been moments of joy as well – tell us about some of those?
I was not as close to my mum as my brothers were, so having the opportunity to form a bond during this time was something I hold dear to me. Also, walking alongside someone who has had this disease has strengthen my understanding and made me appreciate other people’s struggles. Some of the crazy things that my mum did also provided a lot of laughs, which sounds a little mean when I write it but we had to laugh or we would cry all the time.
What was the catalyst for your mum moving into residential care?
Incontinence and her safety mainly, but also due to her shifts in time reality she often found herself scared and startled by the things and people around her
What went well and what didn’t with that process?
The process of going into care was the most difficult because no one wants to think they have given up. But in the end the people, places and process to get there were excellent, understanding and supportive. It was our own emotions and values that made the process difficult.
Your mum went to one care home and then another – why did that happen? Did the move go well?
After a few years at Admatha she became increasing immobile and needed hospital-level care so we moved her to Fitzgerald House as it was within walking distance for me and my father to get there. Again the people and places were excellent; it was our emotions and sadness at moving her from a place we had become familiar with to something new. After she settled in we became familiar with the staff at Fitzgerald, who were also excellent. The level of care was exceptional and the end-of-life knowledge and care went above and beyond.
What differences did you observe between the two care homes?
The difference was being able to look after mum at hospital-level care. We perhaps had her at Admatha longer than we should have because we liked it there and we were waiting for a room at Fitzgerald. We can reflect now that the needs of hospital-level care and a normal dementia unit are indeed very different. The intimacy with the staff at Admatha was because it was a small team and familiar faces, whereas Fitzgerald had more agency staff and was a bigger place, meaning it was not as familiar.
You have also volunteered for Dementia Canterbury – what insights can you share from that experience?
I really like working with people who are still at home as I truly believe that providing some relief to their main carer and also keeping a routine enables them to stay in their home longer. In all the patients – my mum and the people I have volunteered for – just because they have dementia does not mean that they are dead. Right until the end my mum’s fundamental personality was still there, and although she could not communicate it, her human need for contact was also present.
Finally, what’s one piece of advice you would give to someone with a family member living with dementia?
GET HELP!!! So you can be a better carer. You are no good if you are burnt out.