Before I began caring for my mum, I used to plan everything in my life. I was a total control freak. Everything had to be scheduled and my goals all had deadlines. It may sound boring it certainly didn’t do my career any harm. I enjoyed having control over my daily routine and achieving my goals. It felt empowering and rewarding.
Then when mum was diagnosed with dementia, I hated the lack of flexibility and the fact that I was dealing with an illness that was so unpredictable it just couldn’t be controlled. I tried to plan mum’s care the way I planned everything else in life. I booked her appointments and arranged for her care in the same rigid way. Sometimes it worked and was useful, as I knew exactly what was going on and could make sure mum’s needs were being properly met.
On the other hand, my inflexible approach meant I felt very frustrated when things went wrong. Sometimes I’d make an appointment for mum to see the optician or go to the hairdresser and I’d arrive at her house and she wouldn’t be ready. Some days she’d still be in bed and refuse to get up. I felt frustrated. I learned the hard way that you have to take a flexible approach when caring for a loved one with dementia. I’m a strong advocate of planning for the person’s future care and not leaving it to the last minute to look at long-term care options. I also believe in getting the person’s paperwork in order early on. These are not tasks to leave until the last minute. But as every dementia carer knows there are good days and bad days and you have to be flexible on the bad ones.
Even if you’ve got a very busy day, if the person refuses to get up, go out or get ready, you can’t force them. Give them space and go with the flow. There will be times when the person agrees to do something and then changes their mind at very short notice without any real logic. There’s no point saying to them: ‘You said you wanted to get your hair cut’ or ‘You asked me to take you out and I’ve come all this way to do it’. The person most likely won’t even remember they asked you to do something for them.
Be flexible and adapt to situations as much as possible. I’ve learned many things since caring for my mum. I’m more patient now and while I do have that scheduling streak still in me, I can adapt to last minute changes when life throws random things my way.
If you are visiting a loved one to take them out for an appointment, here’s how you can make the process as stress-free as possible:
Call the person just before you arrive to remind them you’re visiting – it used to take me over an hour to get to mum’s house and I knew that if I called before I left home, she’d forget what time I said was arriving, or might even forget I was visiting at all. I would call her five or ten minutes before I was due to get there.
Arrive at their home early – allow plenty of time to help them get ready. I used to allow an extra hour so that if mum was having a bad day and was slow to get washed and dressed, or had lost something, we still had plenty of time.
Don’t rush the person – if they are having a hard time getting ready, telling them to hurry up or get a move on will only make them more stressed and possibly angry. Be calm and patient. If they can’t find something, help them find it. Be prepared to help them get washed and dressed if need be but don’t be too bossy.
Help them choose an outfit if they seem confused – they may not know what to wear or they may choose an outfit that isn’t suitable for the weather conditions. Make suggestions for what they can wear and help them do up buttons or zips if you can see they need a hand but try not to completely take over.
Be in a calm place yourself – if you are stressed or wound up when you arrive, they may not understand why – even if you tell them the traffic was terrible – but they will pick up on how you are feeling. If you’ve had a horrible journey, park up for a few minutes outside their house, sit quietly for a moment or two and take some deep breaths. Be calm when you visit.