Dementia and the right to continue to have a family life

My name is Thomas Joseph Middleton and I have been married to my beloved wife Joan for 67 years. Until recently we were never apart.

My wife has dementia and Parkinson's disease, and I have cared for her for years. I modified our home to be able to carry on as her carer and to give her a quality of life she deserves.

My wife was forced to move to a care home by the council in 2010. In 2012 the court of protection authorised supervised visits between me and my wife in her care home. I visit her there every day. A minority of staff there criticise me on every visit for interacting with her, and I now fear going to the care home at all.

This situation has caused me deep depression and I have lost the will to live.

What's happened

My wife and I were happily married for 67 years. She was in relatively good health whilst in the family home. I modified our home after she fell in the bathroom, and cared for her in the home.

In 2010 the council decided to put my wife in a care home. My wife said she did not want to leave her home when the council took her away. When they took my wife away, they took away everything.

I have had no support to help me adjust to life without my wife.

My visits to the care home have been heavily policed by care home staff – they criticise me for kissing my wife, for taking care of her personal hygiene, for caring for her. Nor do they allow my wife to visit the family home on special occasions such as birthdays. I don't know what I am allowed to do when I am there and I fear going there.

My wife has been moved between several care homes, lost around 5 stone and I myself have become suicidal since we were separated.

What can I do ?

I am applying for a Judicial Review against the care home decision to restrict contact between me and my wife when I'm at the care home, and to prevent unsupervised home visits from her.

The Trent Centre for Human Rights is helping me challenge the decision of the care home to deprive me of contact with my wife. This is a human rights claim – Article 8 of the Human Rights Act provides the right of Respect for Private and Family Life.

This case affects lots of people with dementia in care homes

In setting the boundaries of powers to detain elderly persons in the throes of dementia, there have been serious failings. Parliamentarians, Courts and the Medical Profession have failed to look at how to take action in a way which respects family life, and that is what this case is about.

This is how the Trent Centre for Human Rights describes my situation

The client is reliant on the care home for updates on his wife's medical condition. He is routinely criticised for not being aware of her needs, but is never updated. Entries on the care home log include criticisms of the client for asking his wife to open her eyes or he will go home (which he denies). He has simply no idea as to what interactions with his wife will and will not attract criticism. It is clear that his wife's health is in decline, but no effort has been made to understand that such decline means the often incomprehensible collapse of their spouse's world. She is all he lives for, and from the care home perspective, the 67 years of marriage counts for nothing. By the same token, the wife's wishes are thought of in a crude, black and white manner, as evinced in phrases such as 'she does not have the capacity to consent' to the client's affection. The love between the couple, past, present and future, has been marginalised in favour of perceived efficiency in care. The client defiantly visits on a daily basis, but in a climate of fear. He scarcely goes out any more, and feels thoroughly depressed.

How much am I raising and what it is for

I am on a State Pension and the proceedings have been paid for thus far by the equity in the marital home. I don't have disposable income but the equity in our home means I am not eligible for legal aid.

I have got together the money for court fees, and the Trent Human Rights Centre is helping me apply for a protective costs order so that if I lose the case I will only be liable for a certain amount of the other side's costs, and will not lose my home. I'm raising £4000 to cover that amount.

There is some complexity around the law relating to human rights and vulnerable people, and this case could set an important precedent.

At this stage I would be so grateful for your assistance. If proceedings carry on, I might need to do additional crowdfunding.

About the claimant

My name is Thomas Middleton. I live in Derby, and have been married to my wife for 67 years. She is everything to me.

Fast facts

### Name of case Thomas Middleton v Derby City Council ### What's at stake The private life and dignity of one couple - and of all couples who may face similar battles to care for and be with one another, now or in the future. ### What's next I am challenging the care home's decision to restrict my visits with my wife in judicial review proceedings.