Carers and parents
A child’s clinical team will educate their parent(s) about their medication, but on a day to day basis, the parent is actually living and coping with this and has great ongoing responsibilities for their child’s condition.
If a child has to have hydrocortisone replacements, their parent(s) have to administer appropriately their daily doses and be alert for ‘adrenal crises’, which can be life threatening.
From what we have heard and gleaned from parents, their need was a comprehensive but straightforward guide to enable them to cope with their child’s condition better. The Pituitary Foundation produced an informative leaflet called Hydrocortisone Advice for Parents which would help support their day to day decisions and care of their child. This leaflet has also been welcomed by paediatric nurses, as it helps to underpin their information for parents within clinic.
We also provide a School Care Guide, which helps to give parents some peace of mind when their child is at school. This provides a personal fact sheet and emergency directives to the teaching staff for the school age child.
We also have available to order:
- Toilet facilities cards for those children with diabetes insipidus (DI).
- Emergency DI awareness cards (credit card size cards to carry easily).
- Emergency Hydrocortisone awareness cards (credit card size cards to carry easily).
- Patient care card to record medication, condition and contact details of family and health professionals looking after your child.
The term “carer” describes a person who provides support (practical, emotional or personal) for a spouse, relative or friend regularly or to such an extent that it impacts on his or her own life.
Using this term often encourages the person involved to acknowledge the impact the support they give may have 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”.
Carers and pituitary issues
Many people living with pituitary conditions are able to lead “normal” lives after treatment, while others continue to suffer disabilities or other problems. Long-term illness can, and often does, impact on a person’s family and friends. It is as well to anticipate such possibilities that may be physical, emotional and even financial.
As a carer, you will want to know what to expect for the person you support to help you and them with their path through the maze of healthcare options available. Here we set out to help you in this quest by answering some general but important questions that you are probably asking yourself.
The pituitary gland
The pituitary is an important gland and is often referred to as the ‘master gland’, because it controls all the other hormone glands, including the thyroid and adrenals (which produce hormones essential for life) and the ovaries and testicles (for sex and reproduction). The pituitary gland is usually about the size of a pea and is situated in a bony hollow beneath the base of your brain and just behind the bridge of your nose. The pituitary in turn is controlled by a part of the brain called the hypothalamus. When your pituitary is functioning normally it produces a number of hormones. For more information on the nature of pituitary diseases, visit our pituitary conditions section. Medical specialists dealing with pituitary problems are known as the endocrine team, (usually consisting of endocrinologists, endocrine nurses, neurosurgeons and radiologists).
The symptoms that patients face are many and diverse (and rarely hereditary). They depend on their particular disorder, arising, e.g. from a possible lack or excess of certain hormones. Symptoms can include anxiety, depression, excess sweating, excess body hair, lethargy, feeling hot or cold, headaches, memory loss, visual problems, infertility, loss of sex drive (libido), loss of periods, thirst, dehydration, visual and weight problems as well as sleep apnoea (deep snoring, common in acromegalics). These are just examples. Many patients will not experience more than a few of them. The physical, emotional and behavioural problems experienced by pituitary patients may have profound effects on the family and this may affect the recovery of the patients. Many family members and friends may not have heard about pituitary disease before.
Carers must be prepared, at least in the short run, for all of these symptoms and for problems arising from the condition. They are not all easy to handle. This calls for understanding and support, especially in the early stages.
Pituitary disease is complex as are the available treatments. The range of alternatives is wide, including replacement therapies for hormones supplied naturally by the pituitary gland in a healthy body, neurosurgery and radiotherapy. Moreover some drugs carry side effects and getting the balance right can take time. Patients may feel low if they do not regain the feeling of well-being that they are used to. Establishing the correct treatment can take time.
As a carer you may find learning about the treatment prescribed for the person you support helpful for both of you. It will be useful to know what medication must be taken at what times and in what form. 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 pack you should know where it is and regularly check that it is still in date.
We strongly recommend you be registered with MedicAlert which provides a telephone link to its Emergency Information Centre and to acquire 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. You may also find an emergency telephone number to an endocrine nurse is available from your local endocrine unit.
Working with your 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.
- Keep yourself informed of medical developments: you can do this through membership of The Pituitary Foundation.
Who’s there for you
Pituitary patients sometimes find difficulty communicating with other people and even understanding their own feelings. So, too, do many carers. 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.
Read or download our Carers Signposting document here.
Carers health 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 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.
Make preparations 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: if so, do take this opportunity. Trying to care for people whilst struggling to recover from the flu can be harmful for you.
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.
A sensible and healthy diet with some regular exercise will help you get a good night’s sleep and stay reasonably healthy yourself. If you find this difficult, (perhaps you struggle to buy fresh food where you are, or can’t afford the gym), ask your GP, look at notice boards in your surgery, library or community centre. Many areas now have schemes to help people access good diets and exercise. Find out about relaxation classes from your local carers centre or project, which may also offer information on respite, holidays and advocacy. Keep up interests if you can and make time for yourself.