What is a carer
Using the term ‘carer’ often encourages the person involved to acknowledge the impact of the support they give, how it may impact on their own lives, and to recognise their own need for (and right to) support. It also ensures that professionals and service providers acknowledge the importance of their input, provide support and services for them, and involve them appropriately.
Carers support people in all kinds of situations: older people, people with physical and mental illness and with learning difficulties. All carers have a lot in common, as well as many differences. For many carers, there may be few actual physical tasks involved in their caring, it may be more a case of intense emotional support, helping someone organise their life, getting people to and from appointments, and taking on much more than their “fair share” of domestic responsibility.
Many people with caring responsibilities also have their own health needs, and it is not unusual for husbands/wives or partners to both be looking after each other. Nevertheless, accepting the term carer can act as an open door to services and support, or even just to the recognition that it is ok to say “I need some support, I’m finding this hard myself”.
If you are caring for someone with a pituitary condition, it can be useful to educate yourself about the pituitary gland and the specific condition of the person you are caring for. The information pages on our website can support you with this. You must be prepared for the person you are caring for to have a number of symptoms. They will need understanding and support, especially in the early stages. You should also know the medication that the person you are supporting has to take, at what times and in which form.
Emergencies
It is especially important to know what to do in case of emergency (e.g. if emergency steroid replacement therapy is needed). You should know the whereabouts of the various medications taken by the person you support.
If you have been given an emergency Hydrocortisone injection pack you should know where it is and regularly check that it is still in date. It is also recommended that you remind yourself of the sick day rules and how to use a hydrocortisone injection.
We strongly recommend you be registered with MedicAlert which provides a telephone link to its Emergency Information Centre. You can get an emergency card from your local Carers Centre or Carers UK. This will let people know you are a carer if you have an accident.
Working with the endocrine team
It is up to the person you support to communicate with the medical profession, but your advice and support can be extremely valuable. Therefore, we would suggest if the person you support is agreeable:
- Where practical, attend hospitals, clinics and consultations with them to help them to decide in advance which aspects of their condition to question and get the consultant to understand.
- Take a list of questions in order of priority and write down replies.
- If you don’t understand what is said, ask them to explain again, they won’t mind.
- Ask what any proposed tests are for and ensure you both understand the results.
- Try to stay calm, this will help you communicate more clearly, and help you feel in charge of the situation. If you start to panic or feel angry, take a deep breath.
Support for Carers
Supporting someone with a long term health condition can be challenging, and we are here to support you. Being anxious, frustrated and sometimes angry is quite normal and common.
- You may give the impression to the outside world that you are perfectly fit while you actually feel absolutely exhausted.
- You have probably taken on this role because of the special relationship you have to someone with a pituitary condition, you may be a spouse, partner or parent. Not only do you have the worry and hard work of taking on all of these extra tasks, but some of the symptoms your friend/relative may experience also affect you directly (e.g. if they have mood swings).
- At the same time you have taken on this role because you want to make things as right for them as possible.
- Because of this many other carers may find it hard to ask for support for them, they feel all the attention should be on the person they provide support for.
- In some cases you may feel you have had no choice to take on the role but would have preferred not to, perhaps you are supporting a relative or even former partner with whom you have had a difficult relationship. You are not alone in this.
It is helpful to have someone to talk to about your problems. You should not feel you are being disloyal in admitting any anger or frustration you may have about your situation. Admitting this and talking things over can benefit you, and, by helping you, help the person you support.
You may have a good friend to confide in, but it is sometimes easier to talk to someone you do not know but who is familiar with problems of pituitary carers specifically or carers generally. The Pituitary Foundation offers services for carers in this field: a helpline, Local Support Groups and peer support through our Telephone Buddies service.
There are also national and local carers organisations that specialise in carers, and their help and support can also be of great benefit. In particular, find out if you have a local carer’s centre or carers support organisation such as the Carers Trust or Carers UK. Meeting other carers, whatever their specific situation is often a great comfort.
Supporting your care needs
Maintaining your own health is important for yourself, and for the person you support, as well as other children or adult dependants. The following are some pointers to looking after you:
- Ensure that your GP knows that you are a carer, and that it is clearly stated on the notes they hold for you and for the person you are caring for.
- If you are a parent carer, ensure your doctor records it.
- Write down your questions before any appointments.
- Make sure you take care of your own health: make a separate appointment especially for yourself and prioritise making it to the appointment.
- Some doctors surgeries offer a carers health check and there are some GP practices with Carer Support Workers. Ask if there is any support available for you as a carer.
Prepare before your own health care appointment. Health professionals can often arrange services and support, or point carers in the right direction. Here are some questions you might ask yourself:
- Am I isolated or lonely?
- Do I suffer from stress or depression?
- Is anything about my health worrying me?
- Am I getting enough sleep?
- Do I have aches and pains because of what I do for the person I care for?
- Do I need help with housework/shopping/having time off or other caring tasks?
- Am I worried about money?
- Is my sex life affected by my caring?
- Do I know how to get emergency help for the person I care for?
- Do I have an agreed plan with my GP for the person I care for if I suddenly fall ill or have an accident?
GPs vary in their understanding of carers’ needs: if they are not sure how to signpost you for support with any of the “non-health” issues above, don’t be disheartened, ask them for a referral to Social Services or a Carers Centre: or refer yourself. There is no shame in contacting Social Services or Children’s Services, whether you are caring for an adult or a child with pituitary conditions, and no one will think less of you.
If the person you support needs a great deal of help from you, or if you come within other categories you may be entitled to a flu jab.
The NHS now has more emphasis on supporting people with long-term conditions and may be able to offer additional support, such as an expert patients course, or even an expert carers course. You may be able to find out if anything is happening locally by contacting your local PALS service. They are also the people to contact if you have a problem with the health service you are receiving.