There are currently 800,000 people with dementia in the UK.
Over 17,000 are younger people with dementia and there will be over a million people with dementia in the UK by 2021.
I have witnessed dementia first hand. I had an uncle that suffered this awful illness it not only robbed him of his life but my Auntie lost the life she had shared with him for 60 years. She cared for him with love and dignity 24/7 until the day he died.
She was a proud woman whose pride wouldn’t let her ask for help. I feel the illness actually affected her more in so many ways than it did him.
Whist he lived in his own world, she would try to give him normality. He was extremely well looked after, always well fed, clothed and entertained – sadly he never remembered any of this, he struggled to remember most things. The days that he was like his old self sadly became fewer and fewer.
It was starting to take its toil on my Auntie. She had many sleepless nights when he would be up walking around the house looking for the cat that they didn’t have, shouting out the window at 2 am at the cows that were walking down the main road with the fireman behind them signing Twinkle Twinkle Little Star, the smell of burning when he put a plastic bowl filled with water onto the electric cooker. The flooded kitchen when he left the hot tap running all night and the lovely flowers that he had planted with such love and care some years before ripped from the ground and tossed in a pile in the middle of the garden.
He would go from being calm and almost like his “old self” to being rude and aggressive. He could be hurtful in things he would say to her. On a couple of occasions he would have an outburst of violence and because of that she actually starting being afraid of him. She never knew what was coming next.
With my help we managed to get him a place in a day centre 2 days a week. I could see the relief in her eyes when this was sorted. She planned to use those days to have her hair done, take a long hot bath without fear he might be getting up to no good and shopping with her friend, the simple things of life that most of us take for granted. This all came to a crushing end when he point blank refused to go, he wanted to be at home with his Maureen. She gave in and the hairdressers and the shops were put on hold.
When they went out she had to get taxi’s. Travelling on buses was not an option anymore, he had caused too many scene. She used a local taxi company who understood her needs, but this all came at a cost she could ill afford.
I could go on, anyone that has ever known someone with dementia will understand that what I have said is just a tip of the iceberg. Those that have never come across a family devastated by this awful illness count yourself lucky, and I hope you never do.
She told me she got up to another bleak day ahead to find he had a temperature and was generally unwell, he couldn’t tell her what was wrong but she just knew as well as the dementia there was something else going on, he was more aggressive and he was not in the best of form. She phoned the surgery and asked for a visit, the surgery asked if she could come down, not being one to cause a fuss she took the appointment offered to her for 09.30.
She had to get my Uncle up from bed, bath him, help him dress and try and get him to take some breakfast, and then get him to the surgery for his appointment. It was one of those days that he really didn’t want to oblige. She recalled as they got to the surgery the waiting room was full. She struggled to keep him in one place. His voice raised at times getting a lot of attention from others in the waiting room. A couple of mothers gathered their children closer. He started to get aggressive and started shouting, and then he stood up in front of everyone and wet himself. My poor Auntie was mortified. She felt sick, she wanted the ground to open up and swallow her. She told me she went to the Reception Desk and was so relieved to find the “nice Receptionist” there. The Receptionist showed them into a side room and went and got the nurse.
The nurse suspected that he might have had a urine infection. That was the easy part; they then had to try and get him to do a sample. He wasn’t having any of it and didn’t cooperate one bit. Finally after a lot persuasion they got the sample and with a script my Auntie started her journey home having to face getting my wet uncle bathed and dressed again for the 2nd time that day and it wasn’t even 11.00.
I tried to support my Auntie as much as I could. There were times she would let her barrier down and really tell me how she felt. She told me she often felt very isolated and confessed that at times she resented my Uncle, with a tear in her eye she admitted that sometimes she would snap at him through sheer exhaustion and as she looked at that betrayed look in his eyes and she would be eaten up with guilt. She was tired, lonely and most of all she felt that she had already lost him, this beautiful, caring most gentle husband who would always go out of his way to help others who had fallen a victim to this horrible disease.
I don’t know how she coped. It was the sheer love for him that got her through those bleak dark days.
I tried to get her help, but she refused. She saw it as her duty to look after him without a thought for herself.
The support for the carer is every bit as important as it is for the patient. They are unsung heroes.
There are 670,000 carers of people with dementia in the UK and these carers of people with dementia save the UK over £8 billion a year.
Carers can be family, friends or paid workers. They will often accompany the person they are caring for to a Doctors appointment, be it at the Surgery or Hospital. It is important that people with dementia have regular check-ups and equally as important for the carer to have regular check-ups.
My Auntie often found it difficult to get appointments to fit in caring for her husband. Early morning or late evening appointments were the worse for her. My uncle would not get up until late morning and for her that gave her the chance of getting things done in the house, and if she woke him early it would often result in him having a bad day.
It is important that anyone caring for someone is giving consideration and understanding as their life is difficult enough.
Sadly my uncle died. She was eaten up with grief, asking herself could she have done more. Lost in the endless time she now faced. Friends had moved away, neighbours she didn’t know anymore.
She was suffering another loss for a second time.