Dear Dorothy,
My mother was once the woman who remembered everything. Birthdays, family stories, important dates and even the smallest details of conversations we had years ago. She was the person everyone turned to whenever they needed to remember something. These days, however, she sometimes struggles to remember my name.
At first, we dismissed the forgetfulness as a normal part of ageing. We laughed when she repeated the same questions or misplaced things around the house. But as time went on, her behaviour became increasingly worrying. She would forget conversations we had just had, become confused about familiar places and occasionally accuse family members of taking things that she had misplaced.
After several medical appointments, she was diagnosed with dementia.
I thought I understood what dementia meant until it became part of our everyday lives. Watching someone who raised you gradually struggle with things that once came naturally is heartbreaking. Some days, she is cheerful and recognises everyone. On other days, she becomes frustrated, withdrawn or confused.
I struggle with knowing how to respond. Should I correct her when she says something that is clearly untrue? Should I remind her repeatedly when she forgets something? How do I cope with the frustration and sadness of watching my mother change?
I love her dearly, but I sometimes feel helpless. I am also beginning to worry about what the future holds for our family.
Please, how do I handle this?
Winifred
Dear Winifred,
First, I want you to understand that what you are feeling is valid. Watching someone you love live with dementia can be emotionally exhausting. There is the sadness of seeing their memory change, the frustration of not knowing how to respond and the fear of what tomorrow might bring.
Dementia is more than occasional forgetfulness. It is a condition that affects the brain, causing changes in memory, thinking, communication, behaviour and the ability to carry out everyday activities. Alzheimer’s disease is the most common cause, although there are different types of dementia.
One of the hardest things about dementia is that the person may gradually struggle to recognise familiar faces, remember important events or communicate their needs. However, it is important to remember that although their memory and abilities may change, their feelings still matter. They can still experience happiness, fear, affection, loneliness and frustration.
So, how should you respond?
1. Do not turn every conversation into an argument
It can be tempting to correct someone with dementia whenever they get something wrong. You may find yourself repeatedly saying, ‘I told you that yesterday’ or ‘Don’t you remember?’ Unfortunately, this can increase their confusion and frustration.
If your mother tells you something that is not true, consider whether correcting her will actually help. Sometimes, listening, reassuring her and gently changing the subject is a kinder response.
This does not mean you should encourage harmful behaviour or ignore important issues. It simply means choosing your battles and prioritising her emotional wellbeing.
2. Be patient, even when it becomes difficult
Yes, patience is easier said than practised, especially when someone asks you the same question ten times in an hour. However, remember that they are not necessarily being difficult deliberately.
Try using short, simple sentences. Give them time to process what you have said and avoid asking too many questions at once. If they become upset, speak calmly and reassure them.
Sometimes, a smile, a gentle touch or simply sitting beside them can communicate more than a lengthy explanation.
3. Do not take every change personally
A person living with dementia may become suspicious, angry, withdrawn or unusually emotional. They may accuse family members of stealing their belongings or become upset when they cannot recognise someone they have known for years.
These changes can be painful, particularly when they come from someone who once knew you so well.
However, dementia can affect how the brain processes information and responds to situations. Try not to interpret every reaction as a reflection of how they feel about you.
4. Create a familiar and supportive environment
Familiar surroundings can help reduce confusion and anxiety. Keep important belongings in consistent places, maintain simple daily routines and reduce unnecessary changes around the home.
Photographs, familiar music, favourite meals and conversations about happy memories may also provide comfort.
If your mother enjoys listening to old songs, for example, make time to play them. She may not remember every detail of her past, but familiar music may still bring her joy.
5. Look after yourself, too
This is particularly important. Caring for someone with dementia can take a physical and emotional toll. You may experience exhaustion, guilt, frustration and even grief as you adjust to the changes in someone you love.
Do not feel guilty about needing a break. Share responsibilities with other family members where possible, seek support from healthcare professionals and consider joining a dementia support group.
You cannot provide consistent care if you are completely overwhelmed yourself.
6. Get the right medical and professional support
Dementia requires ongoing medical attention. Work with qualified healthcare professionals to understand the type of dementia, available treatment and ways to manage changing symptoms.
If there is a sudden change in behaviour, increased confusion or a noticeable deterioration, seek medical advice. Not every change should automatically be attributed to dementia. Infections, medication side effects and other medical problems can also confuse.
It is also important to discuss future care arrangements, financial decisions and safety while the person can still participate in those conversations.
Finally, remember the person behind the diagnosis.
One of the biggest mistakes families can make is allowing dementia to become the only thing they see when they look at their loved one.
Your mother is still your mother. She is still a person deserving of dignity, affection, respect and meaningful human connection.
There may come a time when she cannot remember your name, your birthday or the memories you share. That reality can be devastating. But do not let the fear of what she might forget prevent you from creating beautiful moments with her today.
Talk to her. Hold her hand. Laugh with her. Take photographs. Play her favourite music. Include her in family activities where possible.
And on the difficult days, remind yourself that you do not have to get everything right.
With love and understanding,
Dorothy