Over the last 12 months, caring for Ma has taught me many lessons. Some I’d rather not have learnt.
- To be tidy! – I’ve never been the world’s tidiest person, I’ll be the first to admit that. In the past, when Ma could dress herself, I left clothing hung low on cupboard doors so she could reach it and jackets were draped over chairs. I soon learnt that these items could at any time turn into people or animals. I would hear her talking to them.
If I leave anything draped on a chair, the ‘boy’ who visits her, wears it and then she won’t! She’ll say, “I’m not wearing that! The boy’s been wearing it all night!” The item will either have to go in the wash or be snuck back into the cupboard.
Bedclothes folded back, because of the hot weather, turn into ‘bodies’ in her bed so she wouldn’t go in her room. I always have to make sure bedclothes are smoothed within an inch of their life. Just last night, when I’d forgotten to smooth her bed, she refused to sleep in her room and slept in her chair. I have had to learn to hang stuff away and remove anything that looks like it could ‘manifest’ itself.
- To trust only myself – I’ve been let down on so many occasions I’ve lost count. People promise they will call or call in, but they won’t. They will say they will do something for you, but they won’t.
Over the last few months I’ve been forced to ask for help from people when I couldn’t do things. Unfortunately this usually ended up either: a) not happening ie. they forget or didn’t get it done; b) making me feel like I’d just asked them to fly to the moon; or c) just plain stuffing up (maybe I give bad instructions). So now I just try to do it all and forget about the things I can’t get done that way I don’t get disappointed.
- You’re on your own – Don’t expect help from services. The services that are in place to help are so over subscribed they can’t help. They assessed Ma as needing high care and said we could access extra help at home…. that was in June 2015. We are still waiting. It’s not like I haven’t tried to get help.
The social worker at the hospital couldn’t help. The Federal Government’s My Aged Care were shocked at the waiting list but the most they could offer was four (4) hours in-house respite a week in my name (which I’m very grateful for). I even wrote to our state and federal members, but they didn’t care or didn’t respond.
- Do your own homework – Don’t wait for services that may never come. Talk to other care givers for hints and tips.
If I hadn’t contacted My Aged Care I would have no four hour break to go to work. If I hadn’t contacted the Continence Foundation of Australia Ma wouldn’t have found the right pad or accessed Government funding for pads and we wouldn’t have been given helpful information about managing her bowels.
- Be prepared! – Ma’s bowel and bladder can be unpredictable. You just never know what they are going to get up to. I always take a change of pants, wet wipes, disposable gloves in a plastic bag whenever we go out. I learnt this lesson from a poor lady who had been ‘caught short’ and was in a dreadful mess from a bowel accident while we were out shopping one day.
I have a full list of Ma’s medications, medical history and her doctor’s details, pension and medicare cards on the back of the front door, and in both our handbags. It’s a real time saver when you go to a new specialist or she needs to go to hospital.
- Increased ‘craziness’ has a trigger! – Ma can have some good days where she doesn’t hallucinate a lot and her confusion is minimal. This can change with a wave of a wand. It’s like a switch is flicked. One minute she’s there, and the next minute we are off to ‘never never land’. I’ve found that there are triggers that send her ‘off’. These include: tiredness, constipation, being upset, medications (increase in pain medications or a new medication), pain, illness such as a Urinary Tract Infection (UTI), and my latest nemesis, heat.
This is hard to keep on top of, sometimes you just have to ride it out! Make sure you rule out the ‘nasties’ like constipation and UTI or other and seek medical attention if you aren’t sure.
- I will never be patient enough – Every day I pray for patience with Ma and every day I lose patience with Ma. When you are with somebody 24 hours a day, 7 days a week, you will lose your cool. Sometimes I scream and shout and feel like running away from home. I can hear myself yelling but I can’t stop myself AND I hate myself for it.
If Ma is having a bad day I sit with her and try to stimulate her through conversation. It’s a huge emotional drain and when you are a bit of a loner like me it really starts to get on your nerves. I’ve learnt to walk away to what I call my ‘naughty corner’ and re-group. If it’s evening this will involve a glass of wine. Sometimes I think I’ll be lost forever.
- You will lose friends and family – This has caused me a lot of pain. My focus is now entirely on Ma and I’m not the person I once was. People move on. People can’t deal with Ma’s changes, or mine for that matter.
I don’t have the energy to waste chasing them so I let them go and mourn their passing.
- Ma’s reality is different from mine – Who is to say whose reality is the correct one? Ma’s reality is made up of people I can’t see doing things I can’t see. Just yesterday the ‘army men’ were on the roof with a couple of telephones. The other day she wouldn’t go back to bed because she said fleas had been biting her. Of course I just think to myself, “here we go again”, but I go and look anyway and find ants in her bed!
I’ve learnt that sometimes her ‘crazy’ has an explanation or her use of words leads you down a different path to what she intended. So now I always investigate first before I look for a trigger before I make my mind up.
- Find ways to hang on to your sanity – The first thing a carer is told is, “you have to look after yourself!” I always laugh when I’m told that. There is no way as a carer that you can make this happen unless you have services and money to spend on caring for your loved one ($60-70 an hour). So, you learn to find things to help you hang on to your sanity. Mine include an hour at the gym three mornings a week; my blog where I can cut lose on all that ails me; op shopping where I can lose myself among racks of second hand clothing in search of treasure… and clothes I’m sure I will never have the opportunity of wearing; music, reading and prayer. You have to find your ‘escape’ and find ways of losing yourself where you can.