This document discusses the challenges faced by patients with brain tumors and their caregivers. It outlines the physical, emotional, and lifestyle impacts on patients, including headaches, weakness, and personality changes. Caregivers experience high stress as they provide both practical support like transportation and emotional support. Communication between patients and caregivers is important but can be difficult due to cognitive changes or reluctance to discuss feelings. The document provides tips for caregivers to take care of themselves, ask questions of medical providers, and access external support from social workers and support groups.

1. Issues and Challenges
for Carers of Brain
Tumour Patients
Katie Halstead
Medical Social Worker

2. Overview
 The patient’s experience
 The carer’s experience
 Communication
 Handy tips for carers
 Accessing support

3. The Cancer Journey is a period of significant
change for patients and for their families.
A diagnosis of cancer effects every individual
within a family differently.

4. The Patient’s Experience –
Physical Impact of a Brain Tumour
 Headaches – severe repeated and associated with vomiting
 Visual problems – double vision, blurring decreased peripheral vision
 Speech difficulties – slurring, jumbling words, difficulty expressing oneself
 Memory loss - short term
 Weakness/paralysis – similar to stroke symptoms
 Vomiting – sudden and projectile and usually unrelated to food
 Seizures - 20-50% of people with brain tumours suffer with epilepsy
 Personality changes – may be subtle and noticed only by close contacts such
as loss of social restraint, inappropriate behaviour, disorientation and
confusion

5. The Patient’s Experience –
Emotional Impact of a Brain Tumour
 Anxiety
 Fear
 Anger
 Frustration
 Isolation and loneliness
 Disappointment/ dissatisfaction
 Confusing and conflicting emotions
 Relief

6. The Patient’s Experience –
Some of the challenges
 Treatment and medical procedures
 Physical symptoms and side-effects of treatment
 Visible/outwardly-apparent signs of illness
 Unpredictable behavioural & mood changes
 Loss of Independence (loss of ability to drive)
 Adjustment to significant routine and lifestyle changes (cannot work etc.)
 Waiting for test/scan results
 Uncertainty about treatment outcomes and/or prognosis
 Talking to others about their experiences
 Increased financial pressures

7. The Patient’s Experience –
Post-Treatment
Patients often find that the uncertain period after treatment is
completed can be the most challenging part of the cancer journey
 Change in daily routine and increased availability of time can
often create more uncertainty and discomfort.
 Having more time sometimes means facing up to thoughts and
fears that may have been avoided during treatment.
 Support networks can shrink.
 Accessibility to medical professionals.

8. The Carer’s Experience –
Providing practical support
 Providing direct care and assistance to a family member (assisting with
activities of daily living including cooking, household chores, shopping,
washing, dressing, toileting etc.)
 Transporting and accompanying a family member to their treatment or other
medical appointments
 Assisting in the administration of medication
 Accompanying a family to appointments with their doctors and partaking in
discussions with the medical team
 Assisting with form-filling and applications (medical cards, social welfare
benefits)
 Facilitating the family member’s ongoing engagement with their wider
community network (transporting family member to friends, relatives, social
activities etc.)

9. The Carer’s Experience –
Providing Emotional Support
 Talking to a family member about their experience of living with a
brain tumour, their thoughts and feelings and the challenges they are
facing etc.
 Accompanying a family member to treatment and medical
appointments (moral support)
 Comforting role

10. The Carer’s Experience –
Some of the challenges
 Adjusting to the new role of carer (feeling unprepared and anxious)
 Tiredness/ fatigue (both physical and mental)
 High levels of stress
 Understanding family member’s cognitive and behavioural changes such as memory
loss, impaired reasoning and processing, attention deficits, language difficulties and
ability to perform multiple tasks at one time
 Dealing with impulsiveness or aggressive behaviour
 Dealing with depression and personality changes
 Financial implications (if unable to continue to work etc.)
 Managing existing responsibilities (caring for children etc.)
 Sometimes forced to make difficult decisions as family members care needs change
 Uncertainty and fear about treatment outcomes and prognosis

11. The Carer’s Experience –
Common feelings
 Sense of being overwhelmed - both physically and emotionally
 Denial - can persist through the chronic phase of an illness when patient
is clearly deteriorating
 Anger - sometimes directed toward the patient or the healthcare system
 Resentment and Guilt
 Depression
 Anxiety
 Isolation - assume the burden of the caring role without help
It is not uncommon for carers to put on a “brave face” and keep these feelings
hidden from the outside world, particularly from the person they are caring for.

12. Communication
Good communication within families and support networks is important
in helping both the patient and family to cope with a diagnosis,
treatment and in particular the uncertain period thereafter.
Talking is good because:
 it is the best way to communicate thoughts and feelings
 Sharing fears and anxieties can reduce the perceived burden and
provide an alternative perspective
 Suppressing thoughts/ feelings can often make one feel worse and
potentially harm one’s mental health
 We are in a better position to either help our loved one/ if we are
aware of what is on his/her mind

13. Tips for Being a Good Listener
 Establish if your family member wants to talk
 Encourage him/her to talk with an atmosphere of openness
 Listen and show that you’re listening
 Don’t forget other forms of communication (i.e. non-verbal forms such as
nodding, smiling, hugs)
 Don’t give advice unless it is requested
 Use humour where appropriate
 Don’t be afraid of silence
 Show empathy – try to see things from your family member’s perspective
 Bear in mind that you may never achieve full understanding of exactly
what your loved one is facing but the harder you try, the better
communication between you will be (and your efforts will be
appreciated)

14. Obstacles to Communication
 Reluctance to talk by either party
 Fear of upsetting/ agitating the other person by talking
 Inability to express thoughts/ feelings effectively by either party
 Cognitive deficits
 Existing relationship problems/ breakdown
Be aware that there is no “right way” of coping with a cancer diagnosis.
Some people do not like to talk and find other ways of coping emotionally
and psychologically. It is important to give the person space when they need
it and be conscious of “over-crowding”.

15. Other Tips for carers
 It is normal for you and your family member to have good days and bad days
throughout this journey. It is unrealistic to expect positivity all of the time. If the
bad days become increasingly more frequent and you are concerned about your
own mental health or that of your loved one, talk to the medical team in the
hospital, GP or social worker.
 Become informed. Don’t be afraid to ask questions or seek clarification from the
medical team or other professionals. Feeling informed is empowering and
comforting. It is also positive for your family member to see you showing interest
in their situation.
 In order to manage uncertainty, before your family member finishes their
treatment, together make a list of questions for the medical team (What are the
side effects of treatment? Will further treatment be required? When are the next
appointments?).

16. Other Tips for Carers
Post-treatment
 Ensure that your family member has plenty of time to rest and
recuperate.
 Allow family member time to adjust to new routines.
 Encourage you family member to occupy their time with things they
enjoy.
 Encourage your family member to maintain relationships with other
patients they may have met during treatment.
 Establish you limits and don’t hesitate to ask for help!!!!!

17. Support for you and your family
member
 Utilise the resources within the hospital and be aware that some
resources are still available patients and his/her family after treatment
(support groups, complementary therapy, counselling etc.)
 Identify supportive individuals within your family/ group of friends, make
them aware that you continue to value their support (both practical and
emotional) even after treatment is complete
 Ask your social worker about the community/ environmental supports
available to you and your family member in your locality

18. External Supports for Patients and
their Families
 Hospital-Based Supports (social work, psycho-oncology,
complementary therapies, Clinical Nurse Specialists & information
from the medical team where necessary)
 Community- Based Support (PHN, home care teams, GPs, neighbours
& friends)
 Support Centres/ Groups (ARC House, Gary Kelly Centre, Cuisle
Centre, ICS counselling service, countrywide support groups)
 Religious/ Spiritual Groups

19. Useful resources and information
Carers Association of Ireland www.carersireland.com
National Careline 1800 240 724
“Running on Empty” who cares for the caregivers?
www.citizensinformation.ie - information on social welfare benefits, carer’s allowance and
medical cards