Dear carers: Advice to people who are caring for a loved one

After caring for his mother with Alzheimer's disease, Mike Barnes offers hard-won wisdom to those embarking on this often grueling – but also joyous – task

Mike with his mother Mary during her illness in 2013

I send you the news I needed to hear. Necessary and always necessary, looting confusions to find a clear way to go from the front. I have moved my mother Marie four times in seven years. I now see these movements trace the progressive stages of Alzheimer's disease. But the stages are never cared for, they take place in a person, with all his qualities and quirks, and different parts of the brain will be affected to different degrees. In addition, people with Alzheimer's are as sensitive to moods, health, climate and events of the day as we all are.

You will remember the first weeks and months as a caregiver as a time of decision that you are not yet used to taking for another person. It will be easier and you will have less blame if you remember that at each step, being with the person you care for is the best way to take care of yourself. Organizing medical care, monitoring nutrition, hiring additional help, managing legal and financial affairs, shopping and doing laundry – all that matters. But being with them matters more.

We have nothing better to give our loved ones than our presence and our time. Being with this person is the only way to take care of oneself, the more likely to be right and the least likely to be regretted. All other decisions and actions can be delegated to others.

The truth is that there is no elegant way to take control of someone's life. Their driving license, their bank, their choice of place of residence. The habit of asking "What would you like?" Is hard to break. Caregivers, even those who are in a coma, continue to ask. Errors slip into the desire to let the dying keep what they have. So, how do you make peace to deceive you when you want so bad to do them?

I do not know and I keep fighting with that every day. But I now think that mistakes of love should never be regretted. Would not you feel blessed if the only mistakes that people have made with you in the future are born of love and a keen desire for your well-being? You are only human. Forgive yourself.

I tried to help my mother do everything: work, perform my father's property after his death, manage my own bipolar illness. But the care is too important. If you are determined to do it well, you have to unload elsewhere. I could have hired an executor. I would have been able to hire myself – as an executor and caregiver – and reduce my hours of work. I could have engaged, as I did later, some helpers. In short, I could have treated myself with half the consideration that I would treat of a stranger who collapsed under several charges.

I understood things well – many of them. And you go. But you will increase this number by making an accurate inventory of your resources. How much money? Buy as much time, space and equipment as you can. Throw money on the problem, but obviously, do not throw more than you have. And how much space do you have in your own heart? You can not avoid the intimacy of such a question because the provision of care will be demanding. The more honest you are about it, the less likely you are to give more than you can. Caregiving places enormous demands on health, jobs and relationships. Often he dissolves or destroys them. Anything that seems like an expense – friends and hobbies – usually goes away early.

In the months when I struggled to learn to be a caregiver, Mary was diving deeper into dementia. The phone and television were a nightmare. I've taped how to use signs for everyone. Yet, often, she could not turn on the television or turn down the volume of screaming sound. The phone sometimes connected her to me, but often to strangers, some of whom contacted me to claim the money she had promised them.

The shower was another minefield. She always took baths. She now had to deal with a dial with colored markers and a safety chair. The force of the projection water frightened him, as did the three-sided alcove, a tiled cage with the curtain closed. I showed him, several times, how it worked. Later, towards the end of his stay in this house, social workers tried to help him. Sometimes she let them do it, sometimes no. In the past year, I am ashamed to say that I can not be sure that she had more than a handful of showers, or how she could have kept herself clean.

The story of my mother's life was falling apart. As caregivers, our job is to listen to the story of this life, what it was and what it is becoming. Dementia often gave her panic as she struggled to wake up, wild and blind eyes, even tears, while she felt trapped between dreams and awakening, unable to disengage herself completely.

It was when we quarreled. Why did I think she had lost money? Why would not I give him more? Why could not she go home? These rows did not finish until I left the room, I returned 20 minutes later and we resumed the visit. She would then have a welcome smile.

Sometimes I was comforted by our new ability to let off steam and lighten the pressure cooker in which we were together. His eagerness to fight seemed to be part of a new emotional opening. Because it was not just anger. A person with little demonstrations all her life, she has now given an unequivocal voice to love, gratitude, need and solitude. For all the ways that she felt. She kissed more naturally than ever. No stiffening if it lasts too long. She caught and held.

During the first fall, I started receiving calls at all times. I jumped at the sound at night, my heart pounding. His hollow voice was at the other end. Where am I? Where is everyone? There was no way to hide from these paramount issues, when the very essence of existence seemed to dissolve for it. I talked to him or promised to drive. The background sound could not be clearer and I did not know what to do about it. Was there something to do? Except – be more with her. My only deep regret is to leave her alone.

Before I finish, I want to say something important. Look at the person you are caring for. To see them with honest and open eyes. See them for the warrior they are, encountering terrors that you can not imagine. The most courageous and persevering person you will meet is a person with dementia who is trying to dress or attack the dilemma of a meal.

They show great resilience to heroism as they fight relentlessly against the attacks of dementia, as well as a capacity for joy that is not addressed in public discussions about their condition. Dementia is considered a terrible end of the real life that preceded. He strips a person, piece by piece, without reporting anything. But this is only partially. Because I found unexpected wealth in the cave of madness and it was my mother who made them stand out in the sun.

Once, I took her to a restaurant where we could sit outside and listen to music. The air was soft and when the man behind me began to sing, accompanying him on a keyboard, Mary began to play sounds with a jerk of the head. Instantly, she forgot the other people, her food, me sitting in front. Eyes wide, with a delighted smile, she began to move his whole body, unconsciously drawn into the music.

I watched her close to tears, happy to have reached this point, feeling that she had to be somewhere towards the end (never guessing how much she would be in dementia six years later, how much she could lose and not die, but stay substantially yourself). I then rallied and saw what was in front of me: this striking seizure of breath pure and dazzling. I felt strong, proud and happy because of what she gave me at that time. It's the best, and it's not better.

• This is an edited excerpt from Being with – Letters to a caregiver by Mike Barnes, to be published by Myriad Editions on Thursday, priced at £ 8.99. To order a copy at a price of £ 7.19 until February 17, go to mailshop.co.uk/books or call 0844 571 0640; p & p free from £ 15