"My 91 year old mother was diagnosed with dementia and Alzheimers"

About: South West London And St George's Mental Health NHS Trust / Older people's mental health Wandsworth

(as a relative),

It took three years of repeated visits to the GP to finally get a referral to a Specialist at the hospital. Following scans I did not hear anything for some time until finally I contacted the hospital and a kind nurse arranged for me to see a locum who told me that my mother had Alzheimers.

He said sometimes it came as a shock but I told him I had known about it for 3 years but the memory test given always came back with a good score and so it had taken that long to get the referral. The consultant then said they would write a letter to the GP and social services but then did not do that.

Six months later I contacted a man called John who works for Wandsworth CMHT for Older People at Springfield Hospital in Tooting. He got the letter (which had been written but never sent) faxed to social services and the next day a social worker finally contacted me. Finally my mother and I started to get support.

For a year we managed with carers coming in daily and my mother going to a fantastic day centre called St Micheal's in Battersea run by a woman called Renee. John recommended the centre to me. She was so kind and her staff were wonderful.

Eventually mum also started going to a Social Services day centre in Roehampton called Holybourne Day Centre at the weekends as well. They were also fantastic. Eventually this started to break down as I have a very demanding job and, although mum had structured support during the day and early afternoon, I could not get back to support her in the evenings, also she lived on her own.

She would ring me up to 30 or more times an hour after she got home from the day centre in the afternoon. She would have no recollection of having rung me. She was confused about the time and would ring me throughout the night. When I told people they thought it was funny but in one month I had a bill for £180 just for her calls to my number. She never rang any other. Luckily, after speaking to a number of people at the phone company I finally spoke to a representative who cancelled the charge and negotiated a set rate for her calls. I was afraid to take the phone away as it was her lifeline. We have no other relatives and there was nobody else I could call on for help.

Social services arranged for Telecare services to be installed but she would switch off all the communication equipment, turning it off at the mains. Then she would go out in the night, alerting the Telecare alarm that she had left.

Sometimes she would turn up at my door and I would have to take her home to find she had left the stove on or the front door open. I had to put locks on the central heating and gas cooker to stop her leaving pans on and then having them catch fire.

Once I got a call from a large supermarket in London to tell me that my mother was lost and confused and could I arrange to collect her - luckily I was with a colleague who kindly drove me to the shop, as I do not drive.

Then I wanted to go on holiday to take my daughter (who doesn't live with me) to university. I notified social services of my intention and they arranged for extra care and someone to do her shopping while I was away.

Two days before we were due to fly to the US, I took mum to the doctor and they diagnosed her with pneumonia and a heart condition. I then spent a day in hospital with her having her assessed. The doctor said she could not be left on her own and had to get respite care. The GP and staff from the Greyswood Practice were wonderful, especially with the GP who immediately contacted social services and after many calls, half an hour before I was due to leave for the airport, a cab arrived to take mum to a home for respite care. I was torn between two commitments but they assured me she would be well cared for. I went on the break and returned home and resumed supporting my mother but it was becoming impossible to maintain her safety.

Finally I rang John again and explained how desperate things were becoming. He suggested I look at homes and the same day I viewed places local to where I lived on his recommendation, found a place and contacted social services to begin arrangements. Mum visited the home several times with me and we moved her in to Abbeyfield, Richard Cusden Home in Tooting in September this year.

My colleagues say that I am like a different person. I can now visit mum regularly but I am confident in the staff and their care and know that she is safe and supported at the home. She still goes to St Micheals Day Centre twice a week and John is supervising her progress at the home. The relief is enormous. I know my own health was starting to suffer and I could not have kept going much longer.

I have been incredibly lucky to access fantastic support but I have to say none of it would have happened without John and his team. I have many people who have helped along the way, as you can see, but his support, knowledge and expertise have been a godsend. I am immensely grateful to him, he has never been too busy to speak to me personally and give support and advice. To me he exemplifies what care for the elderly and support for their families should be about. He is a credit to the NHS and I hope his service to the NHS and the community are given the recognition that is so richly deserved.

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Response from Jane Healey, Patient Experience Lead, Governance, South West London and St George's Mental Health Trust

Dear Springtime,

My name is Jane and I am one of the Patient Experience Leads for the Trust. Many thanks for taking the time to share your experience of our services and for the lovely compliments you have made to John in the Wandsworth Older People's Team. I am so pleased that he has been able to support you and your mother and that this has had such a positive outcome for you both.

It is always a pleasure to read such positive feedback and I have passed this onto John and the rest of the team.

Once again, many thanks for taking the time to give us your feedback.
Kind regards

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