Things I wish I’d known: an extract from Married to Alzheimer’s

My garden remains my place for reflection, where I can think through things while plotting the autumnal reshaping of the flower beds. One of the things to have preoccupied my thoughts since Tony died is what advice I would give to people who find themselves caring for someone with dementia. Things I wish I had known or been told when Tony was first diagnosed. I’ve put together a few ideas I hope might be helpful – and that is all they are, my thoughts gleaned from my experience.

• Dementia is a difficult disease to diagnose. We can all be forgetful: how many times have you got to the top of the stairs and completely forgotten why you are there? This is not dementia. Signs of confusion are the clearest indicators that perhaps something more serious is going on. For example, I became concerned when I realised Tony was beginning to mix up reality with the fictional characters in the book he was reading. Talk to your GP if you notice any significant signs of confusion in your loved one.

• Do not allow yourself to be shunted out of the doctor’s office with the blithe assumption you will be able to cope. That wouldn’t happen with any other long-term disease and it shouldn’t happen with dementia. Dementia is unique to the person who has it, meaning care and support have to be specific to their needs. Do not worry about being assertive. You are the carer and you know them best, no matter what the doctor or other people are telling you.

• While you’re getting organised, it’s also a good time to sort out your finances. I didn’t find the Department for Work and Pensions (DWP) to be the most helpful of organisations and you will need to push hard to find out about the benefits and allowances you may be entitled to. Don’t give up on this. I did and then too late found I was probably entitled to a Carer’s Allowance.

• Sort out legal matters early, including making wills and organising power of attorney. Don’t wait for a crisis or, worse, get to the point when the person with dementia is no longer able to give informed consent. Power of attorney will allow you to deal with important matters, including the health and benefits system on their behalf, as and when they are no longer able to do so.

• Make it a priority to find a good care home – one where you would be happy to leave them, so you can have a guilt-free, or at least a less guilty, respite break. They are out there, so arrange to visit. Don’t be afraid to ask questions and keep looking until you find one that is suitable for your needs. This took me too long to learn and I didn’t do Tony or myself any favours by delaying it.

• Don’t be like me and wait until you hit breaking point before contacting social services. They can offer different kinds of support, including day centres. Tony started going to a centre through a social services referral and it was a massive help in terms of having time and space to myself.

• The person with dementia can find it difficult to accept their illness, but it is sometimes the reactions of other people, particularly family members, that may be surprising and unhelpful. Even when the evidence is clear, some refuse to accept the diagnosis. I have certainly found this to be true. I realise now it would have been better for everyone if I had not allowed myself to become distressed by their lack of understanding and support. Not everyone reacts well in a crisis. A critical lesson to learn as a carer is to focus on the positive. Prioritise what is helpful and move on from what is not.

• For a short while after Tony was diagnosed, people we knew would cross the street to avoid us simply because they had no idea what to say. This can be really hurtful, but my advice would be not to worry about what other people are thinking, there is no shame in dementia. If they are finding it difficult, that’s something they will need to overcome. I found, for the most part, that once people were over their initial fears, things went back to how they were.

• One of the most important points I want to get across is to try not to feel guilty. I struggled with that, we all struggle with it, but there will be good days, not so good days and then there will be truly awful days. On the awful days, when you feel your head might just explode, you are allowed to grumble or even to shout at your partner. You are a human being and you do not become a saint when you become a carer. With the best will in the world, it is hard to answer a repeated question as if it is the first time of asking or listen with rapt attention when you are being told the same story again and again.

• Don’t panic. Don’t assume it is all immediately downhill following the diagnosis. There may well be a good few years before things begin to get really difficult.

• Have fun together. Make a joint bucket list and then do as much of it as you can. You will need these memories to hold on to when the person you love starts to retreat from life and from you. Our trip to Languedoc was about ticking things off the list, but when Tony was too frail for that sort of journey, I joined the National Trust and the Royal Horticultural Society. Both organisations have pleasant gardens with a plentiful supply of benches for rest stops and they usually have a nice tea room. These were the perfect ingredients for Tony when we had a day out.

• We were lucky as we didn’t have to travel to enjoy a garden. Even a small patch filled with scented flowers – such as roses and lavender – and butterfly-attracting plants like buddleia can provide a calm and restful space. Todmorden in Bloom run an annual gardening competition and this year (2018) I won Gold for our small garden. The garden I created for Tony. He would have been thrilled.

• Local groups can be a good source of support. I always avoided the ones specifically for carers as any free time I had was for me and I would seize that time to do things I wanted to do beyond the dementia bubble. I helped to set up Dementia Friendly Todmorden and know there is another excellent one in Rothwell near Leeds. Both these groups have cafes where the general public as well as those with dementia and their carers can come together. They have an important role not just in offering support and advice, but in normalising dementia.

• Face up to the fact that palliative end-of-life care must be discussed sooner rather than later. With everything else going on, this can be a really tough issue to tackle and finding the right moment is the first hurdle.

• Sometimes, it can feel like the easiest thing to do is to jump in and do things for them. But no matter how frustrating it is, try not to. A skill forgotten is a skill that can never be relearned. That said, I didn’t always follow my own advice, particularly if I was in a hurry. Getting dressed used to take Tony for ever, but being able to do so meant he kept some independence and dignity. For some reason I don’t understand I didn’t want to have to dress him. It always felt that was a step too far in my caring for him. Buttons were the particular nightmare and long-sleeved T-shirts and fleece jackets were the solution. The zips on the jacket were a nuisance, but I didn’t mind fastening those for him.

• Towards the end Tony slept a lot during the day, which often meant he was restless at night. He also became afraid of the dark, especially after he began suffering from hallucinations. I discovered a dimmer switch in the bedroom was more calming for him than a lamp left on. Perhaps because the dimmer created a more ambient light and didn’t seem to create so many shadows. We were still sharing a bedroom and I found it also made it easier for me to sleep too. I only wish I had discovered this simple solution much sooner than I did.

• Our dogs were a comfort to Tony. Pets give unconditional love and affection, the kind of easy, undemanding relationship people with dementia need. You can always borrow a dog for a few hours if you think this would work for you – and then you have the added bonus of not having to look after them full-time!

• Red wine. I have been reliably informed it is full of antioxidants and they are brilliant for reducing stress levels. I’m not suggesting for one moment carers should become dependent on alcohol, but sometimes the sound of the cork being pulled from a bottle of wine can be one of the most wonderful and soothing sounds. Relax, put your feet up and enjoy a glass of wine. It might even qualify as one of your five a day…