Never say you're fine. That was the best advice I was given during my husband’s struggles with dementia. It's automatic when someone phones or calls or meets you and asks how you are, the default response is ‘I’m fine' however you're feeling.

But say that and you’re crossed off whatever list it is and you’re left high and dry. Social workers, caregivers and organisations offering help are inundated with requests for care and have only limited resources. Someone who says they are fine to the enquirer is likely to hear a sigh of relief from them as they cross them off and move on to the next person on their very long list.

Caring for someone with dementia is not the time to put a brave face on. The patient isn’t fine and neither is the carer. Who would be, caring 24/7 with no regular time off, broken sleep and a constant worry about coping with their needs, their emotions and their symptoms?

It's hard for anyone to admit that they are failing, unable to cope with a situation. The temptation is to try to ignore it but eventually there will come a point when it's an emergency, a crisis, and other agencies have to step in. And what if it's you that's had a crisis - you're taken ill, fallen and broken a leg or a wrist, your mental health is suffering? Things have to be put in place before you reach such a point.

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I was lucky, none of that happened to me, I was just exhausted, drained of energy and emotionally not coping. Bill's was the type of dementia that romped through him - there were only three years between diagnosis and his death and every week he would lose another bit of his abilities. Many dementias don't just affect the brain and memory, they attack every part of the body. Bill had Lewy Body dementia which destroyed his muscles leaving him unable to swallow comfortably and in danger of choking, unable to sit unaided, the muscles of his face frozen like an overdose of Botox.

What was hard was the amount of time I had to spend trying to organise care for him at home. I had to wait till someone on their lists died and made space for us. There was an immense amount of form filling to get financial support in the shape of attendance allowance, a blue badge for the car, a reduction in council tax. I nearly gave up.

I had an excellent GP surgery which sent Bill to a variety of consultants and therapists to assess him and help as best they could. But the trouble was, they were really only interested in their particular specialism and didn't see the whole picture and their reports took forever to arrive on the GP's desk. Often I had to verbally update the GP on what had been happening. And every consultant wanted to do their own testing which meant repeating tests which had already been done. Hours were spent in hospital departments as we waited to see yet another consultant.

In order to speed up the litany of questions asked at every step, I printed out all Bill's details, medications and needs and simply handed them to the nurse.

But the best support I had was from a group of people who were in the same position as I was, caring or had been caring for a loved one. We found a wee singing group led by someone whose mum had dementia, and attended by others in the same boat as we were. After an hour's singing, we would retire for coffee and a chat. To be able to talk to others and not be ashamed to admit I wasn't coping, to have advice and suggestions from those who understood and could bring their lived experience to the fore, was a godsend.

I also joined Dementia Research and was paired with a Ph.D student who interviewed me over Zoom every fortnight for six months. She allowed me to express my feelings, relate what was happening to Bill and generally say what I couldn't say to friends and even family. It was like turning on a tap to release pressure.

A Last Journey is available from lumphananpress.co.ukA Last Journey is available from lumphananpress.co.uk (Image: free) I found it difficult to accept that dementia is terminal. There is no cure at present. However, we felt that we had a good few years of living with it before the end. But we didn't. Fortunately we had Power of Attorney in place from several years back. This is essential because what happens if they lose the ability to manage their finances, or to decide their own future and what is best for them? Someone has to step in and it needs to be family or close friend.

And carers, look after yourself. I felt no-one could look after Bill as well as I could but equally I realised that I no longer had the energy to carry on. I needed others to come in and take the burden of personal care from me so that I was able to be his wife, his partner and to share with him memories of all we had done and been together. To have a few moments of joy with him as we recalled funny moments, friends, places we'd visited and happy times.

Life goes on. He died in 2022 and it takes time to heal. Writing my book has helped me immensely and in a way brought Bill back to life for me. I still go to the singing group and chat to others who are starting their unique Last Journey.

A Last Journey is available from lumphananpress.co.uk, £10.99 +p&p. It is also available on Amazon but without the photos.