Still the person I love

Henriette Lamprecht – It’s a tragic and traumatising disease – not only for the person with it, but also for friends and family. A general lack of understanding and limited or no access to information often makes diagnosing Alzheimer’s or dementia a hopeless and frightening experience for all involved.

Dementia refers to a group of diseases, which means understanding the type of dementia a loved one has influences the presentation of the disease, explains Fran Taylor, managing director of Eros Manor Retirement Village.

Fran takes care of her mom, who has the disease.

Dementia usually arises from an event in the brain, but while there are many theories about the cause of Alzheimer’s, it’s known the disease causes memory loss.

“We understand there are three areas of memory: Short-term memory, which is all of 10 seconds, and I think it’s fair to say we are all afflicted with short-term memory loss! The long-term memory is filled with events in our lives and is recalled through emotions – both happy and sad. Then there’s memories established by things we’ve learnt such as tying shoe laces, eating, dressing or making a cup of tea.”

The early signs of Alzheimer’s will be a lack of recall of this type of memory.

This could include forgetting to fill the kettle with water; forgetting to add cold water to a bath before stepping into it or forgetting the order in which you dress yourself.

On receiving a diagnosis the focus seems to be on the disease rather than the person, says Fran.

“We need to understand what the disease has done to the brain and its effect on cognitive ability. While there can be a dramatic change in behaviour, the person still remains a loved one.”

At some point there will be role changes – children become parents who have to be brave in the face of a terrifying disease. They have to make decisions which can be devastating and have to entrust a loved one to a care facility, cautions Fran.

“In the ideal world, families were meant to grow old together, to take care of one another, but we know this is often not possible with someone who has embarked on the journey of dementia. We need to prepare ourselves for this new role – holding their hand and loving them unconditionally.”

A spouse suffering from dementia is comparable to death, Fran explains.

“Imagine the loss you feel when you’ve shared most of your life with someone you may need to be separated from while they continue their journey in a place of care.”

Fran’s advice to family and friends is to try and understand the disease, to understand the change in behaviour and to give lots of love and support.

“We can only imagine what a scary place dementia must be. One minute they may remember who they are, where they are and who their family is. But imagine this memory recall coming and going and how frightening it must be to not recognise family, home and surroundings. Understandably it causes great anxiety.”

This fear and anxiety mostly leads to aggressive behaviour which, in the past, has sadly been suppressed with anti-psychotic drugs. Fortunately carers today are more aware of reducing anxiety and creating trust – reducing the need for medication. This is called a dementia-friendly environment and person-centred care.

“We look at the individual and what they can do as opposed to what they can’t do.”

A golden rule is never to argue with someone with dementia as he or she believes their reality to be true. Role playing reduces confrontation and anxiety.

When an adult regresses and behaves like a child, it can be incredibly emotionally draining for the family, says Fran.

“A loss of memory in the case of Alzheimer’s will mean repeated questions. You will need patience. Not recognising faces will mean your loved one will forget who you are and what your name is. A state of confusion and distrust might present and your loved one may ask to go ‘home’.

“This could lead to wandering off in an attempt to find ‘home’, or the need to pack and unpack. This fills the individual with anxiousness and despair, and the uncertainty in his or her life causes paranoia and accusations to be made.

“It comes with an incredible amount of sadness, realising you’ve lost the person you’ve always known as your mother, while also knowing she is still your mother.”

Experiencing this herself, Fran realises the devastation is balanced with an enormous amount of joy that comes from being a primary carer.

“I certainly feel blessed and privileged to be able to care for my mom, to give her a few hugs a day, validate her feelings and know the reassurance I give her makes her feel safe and loved.”

It is vital to remember your loved one did not choose the disease, she cautions. Sufferers need love, family intervention, trust and validation.

Children are extremely intuitive and there are homes where children have become carers to grandparents while mom and dad are at work. There are also grandparents who live in a dementia-friendly environment and become a day care facility for children.

“This balance has a wonderful outcome for all concerned where the older people pass on trades such as carpentry, painting and general maintenance to the younger people, and the younger people learn the value of kindness.”

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