I was exhausted and desperately needed a break from full-time care for Stuart.
HammondCare was recommended to me and Stuart started his respite there on November 19, 2020. He continued to have regular psychotic episodes, some days multiple episodes, due to the unfamiliar environment and people. My heart ached. The house felt empty and I cried every day.
When I visited, Stuart was very excited to see me and said, “you are one in a million.” It warmed my heart.
Disappointingly, the clinical staff at HammondCare didn’t follow the instructions from the psycho-geriatrician, Dr Millie Ho, to increase the medication for Stuart’s multiple psychotic episodes, so I transferred him to another facility – Huntingdon Gardens – on December 4.
There was no vacant room in the Huntingdon Gardens Dementia Unit, so I settled Stuart in a Premium room. He felt comfortable there, which gave me some comfort, but on the first day he said to me, “I felt I have let you down,” which broke my heart once again.
There was an incident on December 21 and the management decided that Stuart was a risk to other residents. I was very disappointed that they wanted to discharge him immediately without any discussions of other care plans.
I had very few options. Because it was Christmas and would be very difficult for me if anything happened at home, I sent Stuart to St George Public Hospital again, where it was recommended that I find and transfer him directly to another more suitable aged care facility.
I didn’t give up. I wanted to try in-home care, so I started making enquiries while Stuart was in hospital. At my request, Stuart was discharged after eight days and returned home on December 29.
I started in-home care with Home Instead in the new year, initially two hours in the afternoon twice a week, gradually increasing to five times a week. At the same time I started to research and plan for long-term residential care. I visited more than 15 aged care facilities, short listed some and re-visited multiple times. I needed peace of mind in finding Stuart an appropriate, high-quality “home”.
I struggled with the decision about when to place Stuart in care, suffered from anxiety, told Stuart that I was so sorry but it was too hard for me to look after him at home. When he saw me crying, he said “don’t worry, I will help you, I love you,” “think positive,” which made me feel even more sad. Sometimes he was in tears too when he saw me crying. The super intelligent and vibrant Stuart had almost disappeared, but his empathy and caring nature remained. I cried so much that my tears ran dry.
By April, caring for Stuart was becoming harder still, even with the in-home carer, and I knew that the time was coming soon.
I was grateful that I managed to keep Stuart at home for as long as I could, and we had a lot of really good quality times together.
Stuart went into care on June 9, 2021. A new chapter of life began for both of us.
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Throughout 2024 Alicia plans to share her experiences to support and empower carers and their loved ones. She welcomes your feedback on this column – please comment on Facebook, Instagram or X or email editor@ssh.com.au.
Read part 5: Psychotic episodes
Read part 7: Residential care (part one)
Alicia you have been and still are a very strong, loving, caring and compassionate wife to Stuart. Just remember, you are his strength and Stuart could not have done this without you feeling the love and security when you visit him day in and day out. I wish you all the best.