Dementia is a terrible disease and it is not surprising that polls show that it is the disease we fear the most. At 65 women have a one in six chance of developing dementia and men one in 11. I knew very little about dementia until my mum was diagnosed in 2007. I want to share with you what I have learnt from this personal experience over the last twelve years and give my top ten tips for what to do if this happens to someone you love.
My mum’s story of dementia
My mum was a strong feisty woman. A homemaker, cook and clothes maker, as we, a forces family, travelled the world. Fiercely protective of her little family, she was determined to keep the four of us together and refused any mention of boarding school. After we settled into ‘civvy street’, in order to help pay the mortgage she went out to work progressing to work full time as an Accounting Manager, leading a team of over 20 people. Not bad for a woman who had no formal qualifications. She was intelligent and opinionated.
We first noticed the signs of her forgetfulness when she started to not relay telephone messages to my dad and would then deny that we had spoken at all! There were a couple of occasions that I must admit I doubted myself! Then came a stage that most people are familiar with: asking the same questions repetitively, the loop gradually getting shorter until it became about five minutes long!
The worst time was when she realised that she was losing periods of time and was clearly frightened by what is happening to her. She would forget how to find her way around places and buildings she had visited for many years. On one occasion, she visited the toilet in a local restaurant and was not be able to find her way back to the table. Even more frightening was that she was unable to recognise us from a distance.
Gradually as the disease progressed she had become increasingly non-cooperative and swung between being defensive or verbally aggressive as she struggled with her shame and embarrassment and fear. It was a painful time for us all but especially for my dad who was still in denial of the diagnosis and was bewildered and hurt.
In 2017, she became bed bound. Unless hoisted into her wheelchair, she needed to be fed and became unable to communicate verbally. Around this time she started to no longer recognise me or my family. However, she still loved a cuddle and found an arm around her shoulders comforting and she used to still smile broadly when shown love. We were also lucky to have found a lovely local nursing home where and we visited her whenever we could and got involved in her care, yet we had the reassurance that she is well looked after.
Mum’s story ends on 22 January 2019, when an infection fails to respond to antibiotics and she slipped peacefully away.
Here are the 11 tips for coping with the diagnosis when it happens to someone you love.
- Accept the diagnosis and make plans for the future. Get legal advice around wills, power of attorney, bank accounts etc. I know that this can be a sensitive subject but do this before it becomes too late. Talk about the long term, ask them about what they would like to happen, discuss and visit care and nursing homes with them, even if you don’t think you will go down this route.
- Educate yourself about dementia and about the particular diagnosis your family member or friend has received. There is lots of free guidance and support groups around. If it is a parent, partner or close relative, then speak to their doctor and voice any concerns you might have. It was only through doing this that I learnt that my mum had misled him about the support she had and how bad things had become.
- Focus on what they can do. If their long-term memory is still good, then reminisce with them. Ask lots of questions, be curious. Gain the information about their lives and childhood before they lose it.
- Go with the flow of what they are saying. If they think it is Tuesday and it is Thursday, there is little point in correcting them. Don’t argue with them. It is more likely to update and frustrate them than actually help them remember what day it is. Help them to stay calm by being a reassuring voice during what is a frightening time.
- Take time to enjoy the things that they enjoy. If they still love music or art or stories, then join in with them. Try to have fun, enjoy what they can do. Try to celebrate what they can do rather than focus on the decline
- Find out about the latest developments. There are new drugs coming onto the market and some of these can slow the progress of the disease. Additionally, research is being conducted in to other ways to help sufferers including new technology to help.
- Take appropriate measures to keep them safe. This can range from all sorts of measures such as regularly cleaning out the fridge of out of date food, adding child locks to cupboards that contain dangerous chemicals, getting medical alerts. Ultimately may include involving social services and nursing support.
- Predictable routines help. A daily routine is very useful in helping the individual feel safe. Things like talking clocks and large display clocks showing the day of the week, as well as the time, can be helpful. So can be setting alarms to help them remember things.
- Remember that it is the disease that is causing the changes in their personality and moods. Be aware that depression can occur. So can aggressive behaviour both physical and verbal and talk to their doctor if you experience this.
- Love them as they are, you can’t turn the clock back. You will mourn for what they lose each time you spot a loss of function. My mum is now in the final stages and I look back at times when she used to wave at herself in the mirror with a smile for all she could still do for herself at that stage. However, remote they become, remember that the person you love is still inside and so hold their hand or cuddle them, comfort them in the way they like it best.
- Take care of yourself. If you are going to be providing support, you need to understand your own limits. Do not allow yourself to feel guilt over the decisions you need to make on the person’s behalf. Take deep breaths, make sure you get a break. Get other family members and friends to provide support.