World Alzheimer’s Day
This Sunday is World Alzheimer’s Day.
Six years ago, my beautiful friend Kerry was diagnosed with dementia. As time went on, he needed more and more help. I was happy to help. I agreed that I would take on two roles:
I was his "Minister of Happiness" that meant that I would help him to get and do the things that he loved. Kerry loved people, music, coffee and a good curry. Each week, we created a plan to get these things into his life on a daily basis. I created a roster of some of his favourite people who were on hand to help with curry deliveries, coffee dates, music purchases and medical appointments.
We agreed early on that I would also be his "Minister of Safety". This meant that I was empowered to make decisions- sometimes tough ones with the intention of keeping him safe. Safe physically, financially and medically. I had to make some tough calls about Kerry’s care and I am grateful that while I often risked my Happiness portfolio to pull these off, Kerry understood that I had his best intentions at heart.
It’s a big job caring for another human and building a village who cared and could offer time, transport and fun helped both Kerry and me immensely.
A year after Kerry drank his last coffee, my mother-in-law was diagnosed with Dementia. Dementia is often called the long goodbye and it was heartbreaking to see this wonderful woman drift away from herself. She was funny and stubborn until the end.
My Father has been dealing with dementia for the past two years. His attitude is fantastic and his energy is high! There are daily hoops that need to be hopped through!
It’s the strangest thing to watch someone slowly lose their mind. It’s physically demanding and emotionally rough. If you know someone caring for someone with dementia, be useful. Check in regularly. Offer whatever help you can. Caring is a big load and many hands make light work.
If you have someone in your world with dementia, this is for you.
1. Do whatever you need to look after yourself!
Be fierce in your resolve to get regular breaks and extra support. It is exhausting helping someone who may not even want help!
2. Do not feel guilty about taking time for yourself.
You never know what you are going to need to deal with when you support someone with dementia so you need to make sure you always have petrol in your human tank!
Sleep when you can, prep meals and allow extra time for every activity!
3. Allow others to help.
Don’t be embarrassed. Don’t be proud. People want to help. Get people to come and visit so you can get things done. Meals, chores and outings are all a wonderful relief when you are responsible for caring for someone.
4. Don’t make them wrong.
Don’t comment when things are incorrect or repeated. Muddled up names and events can get frustrating. Breathe and relax. It’s not their fault!
5. Stay light.
Not always easy! Laugh and play along with their thoughts and ideas.
Make an effort to enjoy them. Their stories, their ideas. Imagine you are hearing things for the first time!
6. Be respectful.
Don’t speak in a different voice or talk about people as if they aren't present. Dementia is an adult condition. Be as respectful as you would to any other adult!
7. Set them up to succeed.
A whiteboard with reminders or a large daily clock.
Check in with them regularly. Check mail, email, bank accounts.
Get nosy. Be a set of eyes and ears to notice what they may have overlooked. Have regular simple systems that work.
8. Don’t take things personally!
Remember that it is the condition that is difficult, not the person!
9. Do - don’t ask.
Make a sandwich, hand them a glass of water. Make an appointment, buy them the things you think they need. Questions can lead to more confusion!
10. Be a fierce advocate.
Tell people what you need. Phone, phone and phone again! Be proactive about problems - things can escalate quickly and waiting can be a dangerous game.
