People offered many different types of advice to other patients, based on their experiences at different stages of their illness. People are all different and what works for one person may not work for someone else. Here are their suggestions’
- When you get the diagnosis of serious illness go home and have stiff drink
- Find information about your illness
- Keep a detailed record of what is happening to you
- Allow yourself a little bit of hope, whatever the prognosis, and don’t give up
- Try complementary therapies
- Talk to someone who has been through the same illness experience
Says that it is good to talk to someone who has been through the same experience.
- Talk to family and friends about your illness and reconcile any differences
- If you think you might like to go into a hospice ask your GP if it would be possible to go on a preliminary visit to see what the hospice is like
Dealing with professionals
- Make notes before you go to the consultant so that you remember what you want to ask
- Find out who is your key worker (health professional) if you have one
Everyone should have a key worker such as my hospice nurse.
- Be assertive, ask the GP to visit you at home if necessary
- Get help from social services – you will be looked after, even if care is not always to the standard you would like
- Don’t be afraid of hospice nurses, invite them into your home
- If you feel depressed ask your GP for help
Advises people to consult their doctors when depressed and to keep as active as possible.
- Find out where you can hire useful equipment (see ‘Practical matters‘)
- Don’t be afraid to ask for help from neighbours and friends
His wife says it is important to accept help from friends and neighbours as well as professionals.
- Get your address book in order, and sort out papers
- Make it easier for those left behind
- Make a will and decide what special things you want to leave to other people (see ‘Practical Matters’ in the Resources and Information section or AGE UK’s website.)
Advises others to make a will and ‘tidy up’ any outstanding matters.
- Write about your past and your memories for your children
She advises people to write reminiscences of early years and to sort out papers, but not to worry.
- Get shopping delivered
- If possible, don’t have your partner as your main carer – keep the roles separate – it becomes very difficult to have a complete loving relationship with someone who is also caring for you
Approach to life
- Celebrate the life you have had and come to terms with the fact that it will ultimately end
Suggests that people celebrate the life they have had and accept that it will ultimately end.
- Remember that death is natural
- If you have religious beliefs, pray for faith
- Eat a good diet, avoid stress, have patience and believe in yourself
Suggests that people eat a good diet, avoid stress and believe that they will get better.
- Do things you want to do before it is too late
Suggests that as soon as people receive a diagnosis of MSA (Multiple System Atrophy), they should…
- Enjoy the time you have left
- Get out and have a purpose in life
- Set little targets or goals, not too far in the future
- Keep up activities as long as possible
- Acceptance heals the mind
Says that acceptance is a great thing because it heals the mind.
- Don’t worry about death and dying
- Don’t be angry