It often begins with something small. Mum leaves the milk in the pantry. Dad is driving to the shops and rings from a servo, not sure how he got there. Your grandmother wants to know about her husband, who died twelve years ago.
You brush it aside at first. Everyone gets forgetful. Then it becomes a regular occurrence and one day you notice you’re no longer just a son or a daughter, you’re a carer.
Over 400,000 Aussies are living with dementia today. In front of almost all of them is a family member, spouse or a carer doing their best. If that’s you, this is for you. No frills. Just what works.
What Dementia Really Does to a Person
Dementia isn’t a single disease. It’s actually a generic term for a lot of conditions that cause the brain to deteriorate. The most common is Alzheimer’s. Others include vascular dementia, Lewy body dementia, and frontotemporal dementia.
Here’s what you’ve got to understand about it You have time dementia is only in the memory part. It can affect the way someone thinks, talks, sees, judges risk and is in charge of feelings.
So next time Dad gets angry because he can’t find his keys, don’t take it personally. His brain just can’t process the problem the way it used to and that’s terrifying. His anger is just fear wearing a different outfit.
Some things you will probably notice:
- Short-term memory. They’ll remember their wedding day in 1968 but not what they had for lunch.
- Words are missing. They are aware of their meaning. They cannot, however, get to the word.
- Time blurs. Night and day it all sounds the same. They might believe it’s 1985.
- Mood swings come on strong. Up one minute, teary or a bit edgy the next.
- Many people become more agitated as the day goes on. Carers call this sundowning.
The person you love is still there. Some days you will see them perfectly, others you will have to search for a little bit. Both of those are okay.
Stop Arguing. You Won’t Win.
This is the biggest lesson – most carers find out the hard way.
If your mum says she has to pick up the kids from school, and those kids are now 50, don’t correct her. It’ll just hurt her, and in ten minutes she’ll forget she said it, and you’ll have to do it all over again.
Enter into her world for a moment. “The kids are right, Mum. They’re sorted. Let’s have a cuppa.” That’s not lying to harm her. That’s ensuring she remains as safe and relaxed as possible.
Choose your battles. Is it important whether he wears the same jumper for four days in a row? I’d say not. Is it important that he attempts to take the car for a drive? I would say definitely. Stand for safety. Let the little things go.
Practical Tips for Getting Through the Day
You don’t need a medical degree to provide good care. What you need is standard procedures, patience, and a few handy hints.
Have a schedule – and follow it. Wake up at the same time. Eat breakfast at the same time. Go for the same walk. You need a backbone when your brain is all over the place.
Make it easy. Ask one question at a time. Provide two options, not ten. “Would you like the blue shirt or the green one?” is more likely to get a yes or no than “What would you like to wear?”
Learn how to keep the home safe. Store pills, chemicals, and car keys in places where your mother can’t get to them. Install night lights in the hallway and bathroom. Remove loose rugs from the home. Consider stove knob covers if the stove becomes unsafe.
Mark your possessions. Stick labels on doors. “Toilet”. “Bedroom”. It all sounds so simple. It’s effective.
Spot the covert signs. If you notice a change in behaviour, your loved one could be in pain, suffering from a urine infection, constipated or having a bad side effect from medication. If things escalate, they may not be able to tell you they feel ill. Contact their GP.
Incorporate music and old photos Music can go where dementia cannot. Play the music they listened to as teenagers and see what happens.
Talk to them like an adult. Don’t baby them. Talk slowly, make eye contact, and don’t rush. Dignity is important to the end.
The Emotional Toll Nobody Tells You About
Let’s be honest about this one. Supporting a loved one through dementia is absolutely draining.
You’re mourning someone who’s still with us. That’s a strange, isolating kind of mourning – and a lot of people don’t get it. Your friends could tell you, “at least she’s still around”. You nod, but inside you think, yeah, but she doesn’t know who I am.
You’ll feel guilty. Guilty that you lost your patience. Guilty that you’re exhausted. Guilty for wishing you could check into a home. Guilty that you can’t wait for a break.
Here is the reality. It’s how all carers feel. You aren’t a bad person. You are a tired person.
The strain will also be put on families. One sibling works hard while the others ‘pop in’ once a month and tell you what to do. Old resentments are aired, and arguments over money break out. If your family is suffering from some of this, sit down with them early and divide the load, if necessary write it down. Who does the shopping? Who does the bills? Who takes Dad for the day on Sundays so you can get a break?
Care for yourself or you’ll drown
You can’t pour from an empty cup. It is an old expression and for good reason.
Stop. Respite is available for a reason. Take advantage. Getting away for an hour, a day, or a week isn’t selfish, it’s necessary. Recharge.
“Take a nap. If you don’t get sleep, you need backup. Ask your GP about sleep disturbance at night.,”Follow the pregnancy news updates: Get the latest news and updates from the pregnancy news updates.
Keep in touch. Keep it up. Short phone calls or a stroll around the block with someone makes a difference.
Get support from a carers group. It is such a relief to hang out with others who understand, who also have searched for the car keys in the freezer.
Take care of your health. Carers are known to neglect their own hospital appointments. Don’t.
Check in with your GP if you’re feeling flat, angry all the time or hopeless. Carer burnout is real, and it’s OK.
When to Seek Expert Assistance
Eventually, love and good intentions won’t be enough. Here are the signs it’s time for more help:
- They wander off and get lost
- They attack and you or they injure themselves
- They cannot eat, wash or use the toilet without Assistance
- You are drained and you are worrying about your health.
- Their medical needs are too much for what you can do at home
- Reaching out isn’t quitting. It’s just doing what you can to make sure they get the help they need and you don’t.
Start with these:
National Dementia Helpline (Dementia Australia): 1800 100 500. Access free advice, support and counselling for carers and families.
Your gateway to home care packages, respite and residential aged care. My Aged Care. 1800 200 422.
Carer Gateway: 1800 422 737. Information and tips to help you deal with emotional and practical challenges of caring.
Dementia Behaviour Management Advisory Service: 1800 699 799. Advice to help when behaviour becomes challenging. Available 24/7.
And don’t forget your GP.