“Molly was 4 months old when we had to take her to Great Ormond Street Hospital as she had a heart problem…..the consultant took one look at her and said “ this child is a mongol, will never walk, will never talk, will be a cabbage all her life, put her in a home and forget you ever had her”….in 1960 Downs Syndrome folk were called mongols! We were all set to emigrate to New Zealand where my family had emigrated years before. Molly was refused entry because we were told in a letter from New Zealand House that “New Zealand had enough social problems of their own without immigrants adding to it”. Needless to say we stayed in the UK. Molly walked when she was 2 1/2 but has never been very audible. As a family, we could understand her and if we didn’t, she would make sure we did with her actions.
When Molly was 8 years old we moved from London to Bury St Edmunds and had our first real house. Molly had always lived at home but could never be trusted to be without care and left on her own. She attended many day centres with a member of staff or carers which she enjoyed.
My other daughters all married and left home and my husband passed away in 1996, 25 years ago. This was a big blow to us all, especially Molly, who still calls out for her dad and wants to know what he is doing now! Five years ago I noticed a change in Molly’s behaviour, she started being very confused, walking into walls, falling, and was diagnosed as having dementia. I persevered with her for another 3 years living with me, but through my own health and mobility problems her social worker found her a place in a small home where she lived for 7 months. During that time, I didn’t feel she was getting proper care as she was always dirty and unkempt when I visited her. She had several falls during her time there including a broken collar bone which none of the carers could account for. She only had two baths during the time she was there. Eventually she was admitted to West Suffolk Hospital with pneumonia. The staff were very unhappy, had a meeting and decided it was not advisable for Molly to return to the home. The hospital staff were so kind to Molly and arranged for her to be admitted to a local Nursing Home where she still resides. Molly was also diagnosed as having Charles Bonnet Syndrome which causes her to hallucinate. Molly is very content and very well cared for at the nursing home. She is such a big part of our lives, bringing laughter, joy and love to our family and it has been a privilege to know and love her.
I was introduced to Mr Neil Cawthorn, a solicitor from The Professional Deputy Service, who dealt with the other residents finances at the nursing home. I found Mr Cawthorn very helpful with his advice regarding Molly’s finances and I was very happy for him to deal with them while Molly was in care. Mr Cawthorn is continuing to control Molly’s finances and has been very helpful and caring. I am in contact with him quite often and he is always willing to talk to me and keep me up to date with Molly’s finances and discuss how Molly is getting on in the Nursing Home. I also get help and advice from Mrs Hazel Brammar who works at The PDS and is the main lady I turn to when I need information. I find Mr Cawthorn and his office staff very friendly and helpful.