How We Can Help You
Carers
The fundamentals of caring
Know your limits and ask for helpFind support for yourselfDiscuss your new relationship with the person you care forDo not neglect other parts of your lifeAccept that you will make mistakes
A caregivers responsibilities
Caregivers play a crucial role in the physical and emotional wellbeing of anyone who has M.E and for the most severely affected people, having a dictated and caring person to help them with the day-to-day needs can make a world of difference.
The primary caregiver has many roles including: helping to prepare meals, feed, dress and bathe their loved one. They act as housekeepers and shoppers, they provide transport and arrange schedules, as well as playing a crucial role in medical and financial management. These roles need to be clearly defined by the person with M.E and the caregiver; it is important for both to understand the boundaries in the new relationship.
DEcide on your limits and make them known to the person you are caring for.
However, being a caregiver can be an incredibly challenging, stressful and painful experience. It should not be entered into without consideration; despite how much the potential caregiver loves the person with M.E they are not always the right person for the role. It may be worth considering other alternatives if they do not think the role is right for them. Despite the challenges of being a caregiver, for many it can be a deeply enriching experience, providing clear meaning and accomplishment in daily life. It provides a chance to learn about inner-strength as well as providing the opportunity to learn and develop skills that can be used throughout life.
“Every time you do something that saves your patient using their muscles, you are making a positive contribution to their ultimate progress. This is the truth of the matter – the most import role you can perform”
Damily Commitments
Oftentimes, family responsibilities take a backseat to the person being cared for, sometimes this is unavoidable. However, carers need to ensure that they are not neglecting any other family members (especially children). This is an almost impossible task, as so much of your energy is being spent on your ill family member, but it is vital.
Children are often aware of stress or frustration within the family unit and consequently, they may start to misbehave or act out to get your attention. So, make time for your other family members, and explain to them in an age appropriate manner how things are going to have to change.
See our section on Young People for more information
“We all think that we’ll have to care for our parents someday but caring for my daughter was something I never expected. It changed everything for us” – Mother of a 15-year-old with M.E
Work and Finances
If you are also holding down a job while acting as a caregiver this may become increasing difficult. Informing your workplace of your new role as a caregiver is important; inform them about M.E and enquire if your work place has policies in place to support carers as this may allow you to juggle work and caring more efficiently.
Some companies will allow you take paid (or unpaid) leave to look after a spouse or child or allowing you to work half days, split shifts, or make hours up if you need to finish early.
Regrettably though, even with a sympatric employer it may be necessary to leave employment altogether. This should be considered very carefully if you are likely to see a drop in your income which can bring a host of problems itself.
An inquiry into “Caring & Family Finances” found that 1 in 3 carers are over £20,000 a year worse off as a result of caring. This is not due only to the loss of incomes but due to additional expenses as well. Households that care for someone can expect raises in the costs of utilities, food and transport.
The financial consequences of caring needs to be addressed early on to allow some mitigation. Help can be found in a number of places; carers allowance is help to many people provide a small amount of money for someone who is caring over 35 hours a week. Don’t be one of the 42% of people who reported missing out on this vital financial aid.
See our section on Benefits and Social care for more information
Caregiver Burnout
Caregiver burnout is a state of physical, emotional and mental exhaustion. In its worst forms it can turn a caring and compassionate caregiver into one who is unconcerned and detached from the person they are caring for. This is of course something that all parties want to avoid, making it vital that the caregiver looks after not only their loved one but after themselves as well.
Most often burnout can occur when caregivers don’t get the help that they need to look after their loved one, or if they are trying to do more than they are able, oftentimes caregivers try to juggle caring with work, family and other social commitments.
Recognising the signs of burnout
The symptoms of caregiver burnout vary from person to person but it can present very much like depression.
Becoming withdrawn from family and friends due to your role as a caregiverLoss of interest in activities that you used to enjoyFeelings of irritability, hopelessness, helplessness or angerGaining or losing weight or changes in appetiteExhaustion – both mental and physicalNeglecting your own needs
If you find yourself presenting any of these symptoms seek medical assistance before things deteriorate. There are also a number of self-help measures that you may find useful for less serious cases
“Caring for my wife changed the whole dynamic of our relationship. It took us both a while to get use to our new roles” – John, married 8 years
How you can help yourself?
Ask for help.Recognize you can’t do everything.Make time for yourself.Talk to someone.Learn about M.E.Take advantage of respite care services.
Who Can Help?
M.E Support Northern Ireland offers one-to-one meetings to explore your situation.
Visit our support group that allows you to talk with people who are in a similar situation. This is a great opportunity to learn practical advice from our members.
Your local health and social care trust can provide practical and financial assistance in the form of a care and support plan as well as though carers allowance.
See our section on our Support Group