hi
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1. Full time family carers need to be seen as part of a very important 'care package'. Training is given to the specialist carers and yet people with no past experience are expected to be able to do the job. I don't mean that we should be taken away for training or that we should have to reach a 'standard' but there should be guidance given. Information about the condition must be given but it would be very helpful to have some ideas on how to cope. This could be given to the carer in the form of a DVD and CD in a package when a person is identified. It is almost impossible when having a meeting with a doctor to remember everything and lots of question are not asked. It would be useful to be able to look at it in the comfort of your own home. There are many 'simple' things like having a routine; not arguing even if the person is absolutely wrong; talking even though it's difficult; engaging interest even in simple chores around the house; making notices to leave with person if you leave the room. It's also important to stress that there can be lots of good times and times to laugh and even if the person does not remember who you are, it's not something to be taken personally and has to be seen as part of the condition - sad, yes but not impossible to cope with. Positive reinforcement is needed.
Many people also need help with how to deal with anger, frustration, feeling inadequate, pity, resentment, and other negative feelings, and how to avoid feeling guilty. It would be very much like what to expect in bereavement, importantly making the point that there are similarities for everyone but also that everyone is different.
2. There should be a professional who is, if you like, the line manager; someone who can be telephoned if there are questions and who could phone every month, or even two months, to see how the person with dementia is and to ask if the carer is coping. That person would, I think, be a Psychiatric Nurse, at least someone who had been specially trained. That person would be the one to make home visits very regularly if necessary but at least every six months. It would be good if the NHS were more proactive instead of being reactive all the time.
(No-one ever asks me if I'm coping. I know I give the impression that I am and I don't ask for the doctor to come and visit unless there is something serious but it would be nice to be asked. I'm reminded of a book I read by Dr Elisabeth Keble-Ross when I was doing some work on death and bereavement. In it she cites the case of a 'cancer' nurse who had cancer and all the doctors and nurses asked everyone else how they were coping but not her because they assumed that, because of her job, she was fine. All the time she just wanted someone to ask her how she was feeling. Most of the time we will say that we are fine but some concern would go a long way. Are they afraid they are going to open the flood gates? Are they bound by the NHS and treat only the patient they have in front of them? I can understand that but hey have to speak to the carer!)
3. GPs, Community Nurses, hospital doctors and nurses must also have training so that when they are dealing with a physical illness they can act appropriately by speaking to the carer as well as to the patient if it is the dementia patient who is ill or to the carer about the job they are doing if it is that person who is ill. GPs need to be aware of the constant strain that the carer is under. GPs tend to be very focused when they are dealing with a physical ailment and apparently take little notice of the effect that can have on mental and emotional health. (My husband's notes had 'senile dementia' written on it which is a term that I thought they had stopped using. Does this indicate a lack of understanding?)
4. Carers could be encouraged to write a 'Memory Book' for the person with dementia. It would be easy enough to supply a format in the pack with questions, e.g. Where were you born? How many were in your family? Where did you go to school? What kind of job did you do? Who are your family now? This could be made up with pictures and it would be available to read with the person and to take into hospital or a home so that nurses and carers would have some interesting facts about the person to encourage conversation.
5. GPs notes must be accurate. My husband had to go into hospital for a chest x-ray and tests and I discovered on the notes a number of inaccuracies. (This would be true of all patients' notes and everyone should be urged to keep their own record of appointments and treatment.
6. It would be good, I think, if the career's pack contained a CD on how to relax from straightforward 'instant' stress relievers like lowering your shoulders, clasping and unclasping your hands and breathing deeply to deep relaxation techniques which would help the carer rest and help cope with broken nights. It's also something that could be tried with the person with dementia. I used to teach some yoga and know that many people don't know how to relax - watching TV doesn't do it, and although we breathe all the time, many don't know how to breathe properly or know different techniques for different occasions.
7. Information about Powers of Attorney for those who may need to use them and information about how to get a legal Will made for both carer and patient could also be included. Someone - the Psychiatric Nurse? a Social Worker? - could at least go over these things with them and direct them on how to get help.
8. Important telephone numbers in area - doctor's surgery, Psychiatric Nurse etc need to be included.
From a wife and carer Scotland Tommy
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