Dementia - The family perspective

The diagnosis of dementia comes as no surprise to the family and friends of their loved one.

They have lived through a period of time when they have noticed changes occurring. Some of those living with Dementia are amenable and generally happy, others are very difficult to manage due to their behaviour.

With my aunt we had noticed changes, but it wasn’t until she came to stay at Christmas that we began to fully understand how she was struggling. My Aunt stayed many times at our house in the same downstairs bedroom and had always been well orientated.

My Aunt appeared to be more and more confused during the stay with periods of not recognising us as a family and telling us to get out of her house. We had decorated and she didn’t recognise the living room. We ended up having to lock her in the house as I was worried, she would try and leave.

At her home we had noticed that she was buying the same food each week and not eating, cooking it, or eating the food uncooked. She was not taking her medication and she was diabetic. She had been collecting her medication but not taking it. I piled it all up on the side and it was a 3-foot mountain.

As a Neuro Occapational Therapist I completed my own cognitive assessment and sent the report to her GP, who referred her to the Mental Health Team, who assessed her 6 months later. The diagnosis was DEMENTIA - no surprise there.

Care was put in place - my aunt would not let them in. She didn’t need care. My Aunts toilet broke, a new one was put in - she wouldn’t use it as it wasn’t her toilet. She used bags instead. It was only a matter of time. She fell, broke her arm, and ended up in hospital. Due to her now quite advanced Dementia she couldn’t be rehabbed and was placed in an inappropriate nursing home.

My Aunt always liked the finer things in life and was self-funding, so we moved her to a nursing home that provided the care in the hotel style that she liked. She lived there very happily for three years until she deteriorated rapidly over a few days, dying of a chest infection. She loved our visits and always engaged with us in conversation. The home allowed us to stay with her to her natural end, where I played Elvis to her and joked that her favourite song was ‘return to sender’

My mother-in-law was very different. She was very mobile and very plausible in her language. She wanted to live closer to us so we moved her into our village. She soon became well known as she would often be seen walking with her dog very early in the morning, often not being able to find her way home, she would also let the dog out and forget to let him back in again, she would be outside in her under clothes. We put a care package in place to assist her with meals as she would feed the dog cheese on toast and cream cakes, but not herself and to help her take her medication. She enjoyed the carer visits. My Mother in law was an ex-nurse so loved talking to people. However, she would not eat the meals they provided. They tried eating their lunch with her, this worked some of the time, but she would hide the meals after they had gone in a cupboard.

She loved shopping but had to be supervised as she forgot to pay. I would take her clothes shopping, but you had to watch her like a hawk. She would say inappropriate things to other shoppers like the skirt wouldn’t suit them as they had a big bum. My friend and I took her Christmas shopping in her favourite supermarket. We managed to lose her in the shop, but luckily found her quite quickly.

Sadly, she had a stroke and had to be admitted to hospital. Whilst in hospital she was very disoriented. She became very incontinent as she didn’t understand the sign on the door that said patients toilet - she wasn’t a patient. She had to be supervised as she kept trying to leave the ward, she took a dislike to the lady in the bed next to her and constantly poked her. I moved her chair away from the other lady to stop this and the staff moved it back so this carried on until one day she said to me that she had never been arrested (not sure where this had come from), and I told her she would be if she didn’t stop poking the lady next door. She stopped.

She made the decision herself to move into a care home. The home was amazing and gave her jobs to do eg: laying the breakfast tables (she wasn’t a resident after all - she worked there, although she complained about the pay). They allowed her to walk to the local shops until she got disoriented one day and was found trying to walk to our house with a frozen chicken in her bag. She was bringing it for lunch. She was always happy.

She fell one day fracturing her hip, which was operated on. They tried to rehab her and couldn’t due to the Dementia. She refused to eat and drink. We would sit around her bed having a tea party and she would eat a little. She missed her little dog, so my husband smuggled it into the hospital under his coat. We thought she might eat if he was with her. She led in bed stroking her dog until a surgeon came in wearing his scrubs where she very loudly announced ‘here comes the vet’. We couldn’t help but laugh.

She died in a nursing home with her dog on the bed, surrounded by family.

On a recent Mental Capacity Assessment, for a gentleman, for Circle Case Management I met a neighbour of the gentleman whose words resounded with me - ‘Please can you do something to help him’ It was clear this friend was struggling to support his friend who was happily unaware of his dementia and the impact it had on his elderly friend.

The journey we take with a loved one with Dementia is never easy and is very unpredictable. Enjoy the good days and as they become less, remember them as they were.

Caroline Lewis