As always I am writing from my own experience drawing on being the frontline carer for my mother-in-law and mother, thirty years apart, each with different dementias but some striking similarities.
I used the term ‘frontline’ deliberately. Like many major diseases it feels like a war. I had cancer thirty years ago and that felt like a battle. Then, cancer, as a disease in the eyes of public recognition, carried a stigma and a great deal of isolation with it. People actually crossed the road to avoid talking to me. Now cancer is so widespread that such reactions are rare. Everyone understands that it is an illness like any other, that you can’t catch it by talking to someone who has it, that they didn’t get it by being bad and that the thing to do is send support, flowers and get well soon cards and ask the patient how they are.
It may well take another thirty years for dementia to reach the same level of recognition and public understanding. Unfortunately the demographics are in favour of this, in the next three years, or thereabouts, the number of sufferers in the UK will reach a million. A few years after that we’ll all either be a family who are affected by it or know another family who are. Now I am using all the mistakes I and others made last time round to avoid as many of the pitfalls as I can this time. In the hope that this is your first and only time dealing with this disease and bearing in mind that we and our demented are all individuals and that what works for one won’t necessarily work for another, I’m happy to record what I think are the rudiments of knowledge necessary to negotiate the course. As always, this is my own personal view, I am not medically qualified, I’m just writing what helped me in the hope that it may help you. Take from it what you choose and disregard anything you find unhelpful.
1. Know the enemy.
What I did not have the last time round and have used extensively this time is the Internet. Once you have seen images of demented brains and what is left of brains suffering from dementia, you will have no expectation at all that the sufferer will act in any way that is normal. There are plenty of websites from properly qualified medical bodies which explain, with lots of pictures, exactly what is happening to the brain of the demented person. They will take you through every stage of the disease and tell you what to expect. I do suggest you have a good look. At first it is, undoubtedly, upsetting. If you need to have a sit down and a cup of tea after the first look, do so but make sure to go back when you’re ready and really get to grips with the thing. It is helpful to do this for two main reasons. First, you’ll be able to understand what doctors are saying to you when you get to the stage of having to accompany the sufferer to hospital or other medical visits. Second, if you know what to expect you’ll find it less shocking when it happens. My poor father-in-law was deeply distressed when his demented wife accused him of having affairs with other women. All websites will tell you that demented people will, at some point, turn on their carers, quite aggressively. My mother-in-law, being a gentle soul, turned on her husband quite gently. My mother has already turned on me several times, the verbal attacks are vicious, and, of course, being closely related, she knows how to go for the jugular quite nicely. It is upsetting. When she got hold of a phone in hospital and had a major verbal I didn’t stop shaking for half an hour. I was, however, immensely helped by knowing that her brain was misfiring, that she couldn’t help it and that it would pass and that she wouldn’t remember doing it, so if I took it personally, I was only harming myself. There is no point in accusing someone demented of their behaviour later; they really will have no recollection of it at all. As well as the Internet, caring agencies, doctors, hospitals and so on will all have helpful literature about the nature of the disease and how to deal with the general difficulties of it. The general difficulties can include everything from incontinence to falling over, hiding keys to assaulting the postman. It’s a very varied journey you’re on, get hold of a map at the beginning.
2. Know your allies.
The people who crossed the road to avoid me with cancer will be exactly the type of person who will take to their heels and run like the wind from dementia. The important thing to know is that they cannot help it and it isn’t worth wasting your time reviling them or trying to persuade them. Your energy will be limited at the outset, until you get settled into the fight and get your second wind, so be selective where you expend it. Let the friends be self-selecting. Communicate with the stayers, as you would with any disease, but be gentle. Some of the friends will be old and frightened, so try to find easy words for bad news. Some will hog your precious down-time because they need reassuring. I have found the most useful people to be those in the same position because you can have a really good moan and get stuff off your chest. You may wish to look for support groups, online or at places such as the doctors, though the main problem with groups out of the house is always lack of time if you are the principal carer. Later, unless you have help, you may not be able to leave the house. Get to know your sufferer’s doctor and any specialists involved from the very beginning, so they get to know you and keep you in the loop.
3. Take notes.
From day one I got a big indexed notebook and a plastic popper wallet and kept everything in there. All the names, addresses, phone numbers, hospital appointments, official letters, the lot. It fits in a bag and goes with me everywhere. This is my single most useful resource and contains everything from my mother’s date of birth and National Insurance number, to the telephone number of her cleaning lady. The person you are looking after is demented. You will not be able to ask them anything because they cannot remember, quite soon they may not remember you. Their behaviour will be odd and they are likely to lose or destroy any paper, so it’s no use relying on anything written down in their house, which will be no good for filling in forms out of the house. Write it all down, you may be upset after an incident and not remember things too. So, from the outset don’t rely on anyone’s memory. As the disease progresses the number of doctor and hospital visits will increase, a calendar on the wall with plenty of room for writing will help the patient to prepare for hospital visits. If they know it is scheduled they will be more willing to get ready and be ready in time.
4. Get help.
When my mother-in-law died I was £16,000 in debt. My father-in-law arrived every fortnight for four days and treated us, a newly married couple, like a free hotel. When my son was born I went hungry two days a week to feed my mother-in-law, while I was still breastfeeding her grandson. This time round when I got to speak to the specialist brain doctor on my own, the first thing he said was: ‘Have you applied for the attendance allowance?’ It is going to be expensive. You will not have time to cook nutritious meals from scratch, you’ll be living off takeaways. You won’t have time to work, caring will be your job. Everything, from waterproof mattress covers to grab rails in the shower will cost money. We haven’t had our car for weeks, it’s been in the garage because the 200 miles a week has killed it off, there’s already been a garage bill of £800 and the petrol is ludicrous. We are living off my husband’s modest occupational pension and we have no savings left and that’s after only a year. Prognosis for the disease can be for fifteen years in some cases. Residential care can be from £50,000 a year; for the live-in at-home carers I’m paying £100,000 a year and re-mortgaging my mother’s house to afford it. Therefore the first help to get is financial. Ask at the doctors, the hospital, social services and look it up online. I did not bother applying for carer’s allowance because a web site for carers said it was difficult to get and I didn’t have the time to go into it thoroughly, I did apply for attendance allowance for my mother and have applied for the higher rate now she needs help at night. I have also discovered that I can apply for more help when my mother’s savings fall below £22,500, which will happen in about four months at the current rate of expenditure.
So find out what your entitlements are as soon as you can and apply when appropriate. Your notebook with all the facts and figures in it will help you. I also have found a financial expert who specialises in money for senior care and will give me a free first consultation.
My second greatest help has been my mother’s solicitor. Early on we got her a new one, on the recommendation of a friend. She remade her will, while she was still of sound mind and, on my begging, earnestly, had a clause included that said if all her money was needed for her care in her lifetime, all bets were off. She also made me her executor. We then applied for me to have Power of Attorney for her affairs. This document, which must be executed by a solicitor and lodged with the Office of the Public Guardian, provides for a named individual to act on behalf of a person with limited mental capability. This is really important, what if your demented soul had a stroke and couldn’t write a cheque for the gas bill and it was winter? If you had power of attorney for them, you could do it and save them freezing to death. Research this, or your country’s equivalent and put it in place as soon as you can. The Power has to be taken or sent to every organisation you’ll be dealing with on behalf of your demented person and registered in their system, you can’t just tell them you’ve got it, they have to see it. I applied for this eight months ago and have now finished sending it to most but not all of the people that need to know about it. If you do not do this you will end up, as I did early on, trying to get a demented person to memorise a six figure security number, on the phone, while blowing bubbles and waving their head around and that was just to make an appointment to visit the bank.
As soon as you know that your person is ill and you are the carer, make plan B. Who will care for your demented person if you get run over by a bus tomorrow? Who will give you respite from care and who will help you care when things get too much for you? I have turned up in hospital about five times myself in the last year. Being a carer brings with it immense stress, this will lead to illness; plan B is a necessity, not a luxury. You do get battle hardened but you also get battle weary. From the outset you are dealing with a damage limitation exercise, the sufferer will die but if you can prevent collateral damage, you have won. My father-in-law had no plan B except us – his family, my mother-in-law’s dementia nearly killed three of us. This time from about the second month, I began finding out about alternative care near my mother. Online I looked up residential homes and care agencies and had booklets sent from the county council about facilities in the area. Before you do this you need to know the financial situation so you know what you can afford, or what subsidies or grants you may receive or be entitled to. Then you need to phone, email, visit, or otherwise interview any possibilities. I had some base lines which I applied. They had to have qualifications, meet certain standards (I was looking for badges and certificates) and then pass some of my tests. Anyone on answerphone more than twice was out, because I had to be able to ring and ask a person how my mother was. Anyone so foreign my mother couldn’t understand them was out. Anyone producing a cheery leaflet headed ‘So you are round the bend!’ or equivalent was out and so on. Eventually I developed a short list and began, with my mother, to do some interviews. It’s a good idea to involve the demented while they are still able to be involved because later on you can gently point out that the carer who isn’t you was their choice. Is this important? Yes, I have done this to my mother this evening, on the phone, about eight times. It is also important to make sure the choice is the choice of the person who will be cared for; down the line it will help to know you did everything you could. Once you have chosen your alternative carer let them get to know the patient. The care agency visited my mother once a week for an hour to have tea from Easter. She now thinks her carers are old friends, though she doesn’t remember where she met them. Many care homes allow future patients to visit for weekends, sleep-overs or respite care. The more familiar the patient becomes with the arrangements before they become a necessity, the more easily they will take to them when the time comes.
5. Look after yourself.
You are the general in this battle but you are also all the troops. You will never win the war if you don’t look after the troops. I have not been very good this time at looking after the troops because I am a ‘can do’ person and because my mother has emotionally abused me all of my life, so I have a lot to prove. Whether the demented person is the beautiful girl you fell in love with, the kind aunt who rescued you from the orphanage, or the brilliant cousin you always admired, knowing from the start that the army will have to carry more emotional baggage than you can possibly imagine and that this is utterly normal for this particular war is a help. The way to do it is to give your army proper time off from the very start. Have a lie in, have an afternoon off, have a work out at the gym, or a walk in the park. Arrange for someone else to cover you for a couple of hours and switch your mobile phone right off. It’s amazing how just a couple of hours off can cheer up the troops.
The things not to do are to go in for strong drink, give into despair or do what the demented person says. My mother phoned last night, wonderfully loopy, trying to prepare me mentally for her dying in the night. Naturally I stayed up till late, she went to bed, slept like a log and could remember nothing about it this morning. I did, however, have the common sense to have a lie in. Further down the line, it will get easier not to dance to the tune of dementia, when the dementia becomes increasingly obvious. There will be months, maybe years, when you feel as if you should treat everything the sufferer says as you would a sane person. You can talk to them kindly and be concerned but do what you think. You are the general, not them. At this point knowing the enemy will help. Go back and look at those pictures of brains that you found and remember what you are really dealing with.
Above all things be kind to you. If you have been brave enough to take on this battle and put yourself in the front line, you are a better type of person than those who ran away. It is the hardest thing to divorce yourself mentally from the suffering but very necessary if you are to help the sufferer. One of the good things about the disease is that the person is not in pain; for the majority of the illness their body will work normally, they will look as usual, they will not have tubes going in and out of them, be attached to machines keeping them alive or any of the other horrendous things that can happen to the body you live in. The main suffering in the later stages of the disease is to the family and friends of the demented. By this stage your little looney may be happy as a lark and doing the thing that people who go on meditation courses pay good money for, namely: living in the moment. So, beyond and above all other things in this battle, don’t stress. Do all that you can and then stop worrying because, for sure, whatever the worry was with your demented person, there will be a different worry tomorrow and they will not remember whatever it was you were both worrying about yesterday.
In some of the worst days of this, and there have been some bad days, I have reminded myself what an opportunity this is to grow my soul. When there have been funny things, I’ve laughed. And when I lost my way in the fog of war I remembered to be grateful that I was not the sufferer. There but for the grace of God goes any one of us. If you are sane and can read this, give thanks. The human brain is the marvel of the planet and next time I return to this topic, I’ll tell you what I’ve discovered about looking after yours.
SaneLaverick.com – finding fresh ammunition in shared knowledge.