You probably thought you were alone but there are many here who have experienced dementia, either as a person who has been diagnosed, or as a carer.

Or you may be a relative of someone who has Alzheimer's disease or another dementia and you are totally bewildered and scared at the unknown.

There are so many useful messages that have been posted here, and there will almost certainly already be some that exactly mirror your experiences or your concerns. Please join us - don't be afraid to post a message if you feel you have something to say, or if you want to ask others in your position for help or advice. Or if you just want to rant a bit.

Best wishes
The Team of Moderators

Keeping the forums on track

Since its inception, Talking Point has proved to be a resource that is quite unique for people with dementia, their families and friends.

The great strength of the forum is that it is virtually self-sustaining in content.

Members are people with dementia and carers who post on topics that are of relevance for many others. They are people with direct experience of coping with dementia, so when they give advice, it is practical, not from a textbook.

Web forums usually need somebody - usually called a moderator - who makes sure everything runs smoothly. In the case of Talking Point, there is a small team of moderators and all of them have personal experience of dementia.

What do moderators do?

Most of the time, they simply use the forum just like any other member and when they post, they post as members, not moderators.

Sometimes, they need to make some intervention to defuse a conflict, to correct or balance something that has been posted, or to suggest alternatives.

They may also greet new members, though it is often the case that other members do so anyway.

Who are the moderators?

You can learn a little more about the Talking Point moderators individually by selecting their names below.

I was 44, with a lifelong career in IT, when in 1991 Jan, my wife of 22 years, began to show symptoms of Young Onset mixed dementia - Alzheimer's and Vascular.

The formal diagnosis came in 1998. I cared for Jan increasingly at home as the condition progressed. By 2001, when Jan's condition required 24 hour specialist nursing home care, I had all but stopped working outside caring.

Since 2001 Jan has lived at the care home, as her challenging condition has deteriorated. I retired early from full time employment in 2004, largely as a result of the stress of our situation.

Reading about Talking Point in the Alzheimer's Society newsletter in December 2003, I joined and became a moderator soon afterwards.

I continue to support Jan, while attempting to wring something positive from a very distressing situation by trying to help others who are in a similar boat.

Photos

Left: Brucie and Jan in 1993.
Right: Brucie and Jan on Valentine's Day 2007.

For most of my adult life, my mother lived on the other side of the country in British Columbia. This meant I saw her at most once a year, although I spoke to her at least once a week. So little clues I might have noticed if we lived close to each other went by me.

My sister Carole was the one who first realized Mum had Alzheimer’s after Mum visited her in 1999. In July 2000, my husband and I visited Mum and I realized something was wrong. That December I was back for a week’s visit, to help my stepfather. I ended up taking my mother home, after getting the two of them legally separated, the finances sorted out and packing up way too much clothing and household items.

She had to be sectioned four days after we arrived in Ontario. Fortunately my sister was with me, as I don’t think I could have ever done it alone. After two weeks in hospital and being diagnosed with Alzheimer’s one month after her 64th birthday, Mum moved to a retirement home. She spent just over two years there and then moved to the nursing home she has been in since.

As I’ve documented in many posts here, Mum has had very aggressive and violent phases of the disease, physically and verbally attacking people. Now she is far along in the disease and finally seems to have settled. She laughs and smiles and seems contented. That’s all I can ask for.

Photos

Left: Joanne's mum and dad in 1953
Right: Joanne and her mum.

I am Connie. Widowed after 35 happy years.

Met Lionel 1995 and fell in love. Looking back the signs of erratic behaviour and forgetfulness were already present. After two years we tried to find out what was causing Lionel's unusual 'episodes'. A further 3 years, and innumerable tests, later came the diagnosis: Alzheimer's.

He had already stopped driving, and now was unable to continue working. Mobility began to go, along with spatial awareness, becoming wheelchair bound. Continued caring at home until November 2006, when Lionel went into care home (privately funded).

Today he is completely unable to do anything for himself, and exists being moved from bed to chair by hoists. Joined Talking Point in March 2004. My lifeline.

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My full name is Craig Clarke and I have been a moderator on TP since it was started in back in 2003.

I approached the Alzheimer's Society to help set up the Talking Point forum after looking for online support and advice for my father (Peter Clarke) who developed the early signs of Alzheimers when he was 65.

My father was a carpenter, spent 25 years in the Navy and then lectured Marine Engineering and Business Studies until he retired.

Always a very healthy, intelligent and caring man. Dad's decline has been very gradual but he is now in care at the latter stages of Alzheimers. I feel blessed as he has always remained happy and dignified.

In September 2007 Craig was presented with the William Brooks Award for Volunteers for helping set up and support Talking Point.

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CraigC with his father, Peter.

Our photo is taken in North Tenerife ..the last carefree holiday Eric and I enjoyed together...in 2004"..He was diagnosed with Alzheimers 2 years later. Eric and I have known each other for 16 years..and have been married for 7 of them. When we met I was working as a full time Registered Nurse and continued to do so until his diagnosis in 2006..following that my hours working professionally gradually decreased until last year when it became obvious to me that work and a husband with Alzheimers were incompatible...so I took early retirement and now care for Eric full time.

The impact on our lives has been tremendous..and reaches out to other members of our extended family too. I stumbled upon Talking Point quite by accident...it too has had a huge but positive impact on our life.

We have the opportunity to share our feelings..our worries..our practical and financial concerns..in a way that we can nowhere else.

Dementia is unique to the sufferer..and the carer. We all need support and Talking Point exists solely for that purpose.

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Eric & Gigi in North Tenerife, 2004

We married in March 1963.

In 1990 at the age of 58, my husband was diagnosed with Type 2 Diabetes.

In 1999, there were occasions when he acted totally out of character. I put it down to two things, 1) him becoming a 'grumpy old man' and as both of us had retired, 2) getting under each other's feet.

In 2002, we relocated from the Manchester area to Kent, to live near our only son and his family. We were both so looking forward to this move, having visited the area regularly for 10 years, and loving it.

My husband was unable to settle, and deeply regretted leaving Manchester. He became very depressed, and in 2004 we planned to move back. We sold our house twice, and each time he backed out at the last minute. I realised he was unable to stay with a decision and I decided we would stay in Kent.

His loss of short term memory and his irrational behaviour caused increasing concern, and in 2005, following a CT scan which showed brain shrinkage, he was diagnosed with Alzheimers. I now wonder if he was developing it in 1999.

I am his sole carer.

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Grannie G and her husband in 2004

I moved to the USA 24 years ago. I first noticed my mother's lapses in short term memory in 2002 (forgotten phone calls, forgotten conversations). Her GP said it was normal aging.

In 2005 she had 2 strokes within a day of each other and a CT scan showed a previous stroke. It was clear that she had almost total short-memory loss, and was generally confused about time and place.

She moved to an extra care retirement flat, but following several falls she became essentially bed-ridden and had to be admitted to the on-site nursing home. I was leaving for the airport to see her on August 1st, 2007 when I received a phone call to say she had died.

In the period between her strokes and her death I spent a large portion of my time either on a plane, or attempting to manage her care at a distance. Talking Point became a life-line. As a long distance carer who was not familiar with either dementia or the services available in the UK I don't think I would have got through the experience without the support of the members.

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My mother and her beloved grandchildren (1991)

Peg and I were married in 1947 after I left the Merchant Navy.

I trained as a Podiatrist worked in both private practice and NHS. I retired from the NHS and my post as a Podiatry Services Manager in 1992.

In 1994 my Peg was diagnosed with Alzheimer's disease.

In 1999 I was made an MBE for services to podiatry and health care in the West Midlands.

I was a carer, over 13 years, at home for Peg until June of 2007, when her condition deteriorated and she went into a nursing home.

She was in the home for two weeks when she went into hospital. Four days later, on July the 4th, she decided enough was enough and she left this world. We were four months short of our Diamond wedding anniversary.

Photos

Right: Norman and Peg in 1947.
Left: Norman and Peg in 2004.

When my father-in-law, Harry, began to show the early signs of Alzheimer’s disease in 2004, I did what I normally do when trying to understand something new – I turned to the Internet.

Once we as a family began to get our head around some basic information, we were confronted with the more practical, day-to-day questions – the ones that begin “Has anyone ever …?”. These questions really need to be answered by people who can share their experiences and offer their support. So I was lucky to find Talking Point and joined in 2005.

In 2008, a crisis arose when Harry collapsed at home and had to be taken to hospital. During this period we realised the Eva’s memory was becoming very poor and she could not remember that her husband was in hospital.

Sadly Harry died and Eva decided that she would like to move to be closer to us. She now lives in a lovely residential care home that is only 10 minutes walk from our house.

Talking Point has been here for me through all that has happened so far and will be there for all that is yet to come.

Photos

Left: Eva on her birthday 2009
Right: Harry with his grand daughter

Until recently I was a part-time carer along with my dad and sister for my lovely mum who had Alzheimer's. Sadly she died on 14th August 2009. My beloved parents had moved to Shropshire in 1997 to help me look after my son, Will, who was only 3 then. After he became too old for a “baby sitter” both of us felt if was a privilege to help them in turn. Now that mum has gone I'm still visiting my 82 year old dad every day because after 60 years of marriage he is finding it extremely bleak living on his own so I'm still caring in a way, but so far (touching all the wood I can find!) without the shadow of dementia.

I volunteered to become a Moderator because I feel passionately about dementia care. Talking Point was, and still is, a lifeline for me and has brought so much empathy and understanding into my life that I want to do anything I can to "repay" the support, help, advice and friendship I've received from you all, and it is an honour to serve TP to the best of my ability.

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Vonny and her mum and dad