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I have both my parents had dementia, both got to the point where it was hard to tell if they really recognised me or their other children, one eventually got to the point of not recognising any of their children. It was very painful not to be able to connect the way we used to when I visited, not knowing whether my visits were of any benefit but still feeling that I must visit, that I cannot betray that emotional bond.

My father has dementia. His partner has refused to let my siblings and I do anything to help make his life more comfortable in his own home. No consideration for his condition or the level of care that he needs. We have been cut off from him. We have no way of reaching him. She won’t allow adjustments in the house or a screen led communication through the television. He is completely isolated and sees no one apart from her. He asked my sister & I to do everything to help him stay in his home and yet his partner denies him this.

My wife, Jenny, was diagnosed with mixed dementia 4 years ago. She was an exNHS Practice Manager. There was steady deterioration in memory and comprehension over the next three years. She lost the ability to read or write, only recognising me sometimes. Helping her wash and dress was a problem. Incontinence became double incontinence in the bed, all over the house or if we went out. For night visits to the loo an alarm on the bed gave me warning, but if she got there first she would not remember to take down her nightclothes. She hated using safety devices and fell several times.
A morning carer helped get her washed and dressed, but she would not always co-operate. Equally she might push me away if I tried to give her a kiss or cuddle, not remembering who I was. Sometimes, when I was working on the computer upstairs, if I had not locked the back door she would wander down the road looking for me. Eventually she went into a first-class care home, she often became terribly upset when I had to leave her, and I also became distressed remembering our 61 years of married life. She passed away in July 2024, aged 83. I am aged 87 and we were always very close.
Another worry is the sheer cost of care, in our case c£8,000 per month. In the eyes of the NHS Jenny was not ill requiring medical treatment and therefore did not qualify for financial help. It causes great worry and distress to others. Would the approach be different if an affordable treatment was found and, perhaps, needed monitoring? As it is, the worry of a seriously ill wife and trying to work out how to pay for her care is enough to break both of us.

My wife Jane was told she has Loui Body Dementia about a year and halve ago. I believe she had it for many years! We would have very bad communication problem's and the rows that went with them. My wife was a very intelligent nurse practised on ‘Both Sides of the Pond’. She actually has written documents on this and was very well respected as a nurse and in Head Nurse rolls. After 35 years in nursing, she obtained a job in a civil service position and obtained top evaluations in that roll. After retiring, I noticed she was crying and a bit listless. She would get very uncomfortable and there were things bothering her she could do nothing about. I kept telling her to let all that stuff go, you’re retired, let’s enjoy life. Well, she kept losing more of her cognitabilty, getting more restless, could not sleep well. Getting up at night. When she started hallucinating, telling me things that didn’t make sense, weren’t there and started falling all the time, I had to call an ambulance and after 7 months in two hospitals, it was reverent she could not take care of herself and way to much for me to handle. My brilliant soulmate’s mind was no more. She can still recognise me, but she is very frail and only 32-33kgs(84-85pounds). The CareHome is magnificent. She broke her hip a few weeks ago and she spent a week in the hospital! Thank God for the NHS system here in Scotland. AE, consultants nurses cleaning, food teams are wonderful. She broke her right hip joint and spends most time in the wheel chair and needs support. The care home and the residents are wonderful. She use to cruise up and down the hall. Now she is placid. Hopefully she be back on her feet soon. What a LADY! God is with us and hopefully the future will be better! Thank you and God that I can tell you about my extraordinary soulmate!
Than God and all who help my Jane xx xx.

The reality of the diagnosis with Lewy Bodies is devastating for my husband and from the day he was told he became a different person .When asked what help we need I couldn’t say as I have no experience off the way his condition was to change in three months he is totally dependent on me he worries if I go out paces the street where I live telling people I haven’t come back at night going out when I am in bed waking up finding the front door open in the middle of the night lighting the gas cooker when asked what was he doing his answer was lighting the fire as it was cold. This is the reality of living with Dementia.

I am 70 years old and my memory is not as good as it was. However my long term memory is fine. A few months ago I thought it might be a good idea to sign up for a new Alzheimer's drug trial. They undertook tests to evaluate my suitability and eventually told me I was unsuitable for the trial. .They informed me I should get checked out by a doctor. As my NHS doctor is almost impossible to see I decided I would be better served going private.
I thought I was fortunate in having Private Heath care insurance. Unfortunately this appears not to be helpful as although they have given me a referral for a Scan to diagnose my condition they have not followed this up with actual treatment. They did however suggest I have the Scan done privately at one of their many UK hospitals and gave me a contact to make a booking. However even that line of support has failed to happen. I am therefore left with this feeling of being stranded without hope of obtaining a diagnosis even though I am prepared to pay for it myself.
Any advice the Society can offer would be much appreciated.

My Dad died of Alzheimer’s 10 years ago. It was terrible to see him fade away, he was such a strong intelligent man. He passed away from a massive heart attack two years into the disease and thankfully he didn’t have to suffer the full effects. Mum, however wasn’t so lucky. She was diagnosed in 2018 and after watching her go through the awful stages of Alzheimer’s she passed away this year. The estimated cost of her care was just over £208,000. Like so many other people have shared, she worked all her life and paid her taxes. She certainly wasn’t rich. She had very little help from the NHS. What other illness is treated like this? At the end of the day a terminal diagnoses of cancer or Alzheimer’s you are going to end up with the same result. It’s just with dementia you have to sort out your care.

I lost my Mum to Dementia In February although it took her slowly away over 4 years,The cruelness of this illness is relentless.Mum was the Heart of our Family and is missed so much,Early diagnosis is paramount in allowing us more time with our loved ones while they can still recall who we are.Dementia needs to be more of a Priority.

My darling wife was diagnosed with dementia, Alzheimer's, in May 2017. Over the next 4 years we saw 6 different doctors from Parklands about every six months. A dementia nurse also called to our home every 6 months. Both she and the doctors stopped seeing us in 2021 saying care was now with the GP surgery. In other words I was on my own to look after Marilyn, my wife. All we have had in the last 7 years is information about various places and organizations to go to. No practical help. I'm coming up for 83 and Marilyn is 80 next Saturday. She remains contented but does absolutely nothing. I dirt her medication, get her washed and dressed, do all the cooking, washing, gardening, ironing, etc etc. I had a hip replacement 2: years ago and my second heart bypass also just over two years ago. As long as I stay fit I can cope. My fear is what happens to Marilyn if I'm not around. Our daughter is moving nearer and may cope but doesn't have my patience. Marilyn would be devastated if she were put in a home.