Families Living with MS

1. Families Living with MS

2. MS - “The uninvited guest” • Appears, spreads its baggage and never goes home • Each family member makes his/her own relationship with the intruder • This evolves as the disease progresses, and changes to meet the demands placed on the family system Kalb RC 2000 Medical Management and Rehabilitation. New York Demos

3. Multiple sclerosis • Pervasive • Potential to alter virtually every aspect of family life • Entire family lives with its consequences • Has to learn to accommodate it

4. Learning about MS ‘the person with MS and their family often have to piece together the picture for themselves, partly from a neurologist who understands the disease but not their situation, and partly from those in the community who may understand their situation but not the disease’ British Society of Rehabilitation 1993

5. “Through sickness and in health” • No conception of what the words could potentially mean • Financial consequences • Sexuality • Intimacy • Partnership vs. dependence • Child rearing

6. The family identity • Families develop beliefs about themselves in relation to the society they live in • Relates to • standing in the community • durability • closeness - doing things together • MS can disrupt this

7. Lifestyle changes • Physical difficulties may result in visible lifestyle changes • Less obvious physical and psychological changes may exist • Depression, mood swings • Difficulty with coping or communication • Subsequent relationship problems

8. Fears and anxieties • Uncertainty is not easy to live with • For the person with a condition • For family members and friends • People might be feeling confused, angry, isolated

9. Who cares? • Partner • Children • Non-family members • External support

10. Role changes • Pre-conceived ideas and traditions relating to roles within the family • Assumption of free choices • MS may alter how roles evolve • one partner taking on majority of responsibilities • Children, giving care/household tasks

11. Patient or partner? • Partners might feel the pressure of taking on extra tasks or responsibilities • They might look on the person with MS as being ‘ill’ rather than living with a condition • The person with MS might find it difficult to change from being an equal partner in the relationship to being ‘cared for’

12. Impact of a parent with MS • Frequent role changes when parent has relapses and remissions • Impact of symptoms on day to day life • Reduction in financial assets • Relationship changes/conflict • Residence changes • Intervention of a large team of healthcare and social services professionals • Stigma Blackford KA 1992 Brandt PA & Weinert WC 1998 Peters & Essess 1985

13. Positive effects on child carer • Children have a high degree of sensitivity • Increased empathy • Potential for mature friendships • More frequent use of acceptance, humour, character admiration, genuineness Blackford KA 1992 Crist P 1993 The American Journal for Occupational Therapy. 47(2): 121-131

14. What do carers want? • Time off from caring • Relief from isolation, and satisfaction with the help they receive from their family and others • Receipt of reliable and satisfactory services • Information • Recognition of their role and contribution www.carers.org

15. What do carers want? (2) • Freedom to have a life of their own • To maintain their own health and well being • To have confidence in the standard and reliability of services • Their opinion respected • That they share responsibility of care with service providers • Practical and emotional support • A say in the way services are provided Bamford KA et al 1998

16. Needs of caregivers (3) • Information and advice on symptom management • Safe ways to lift etc • Training on cognitive problems • Managing incontinence • Services available incl cost and accessibility • Adaptive equipment, special types of transportation • Financial issues • To be listened to… Soderberg J 2003

17. Carers rights/legislation? • Carers Allowance • Employment and Carers • Department of Health (1999) Caring for Carers: a national strategy for carers • Carers and Disabled Children's Act (2000) • The Employment Act (2002)

18. Young carers projects • Counselling • Advocate • Recreational activities • Peer support • Support from understanding adults • A chance to be children again • Respite or time out • Safe fellowship www.nationalmssociety.org/keepsmyelin Mutch K 2006 Young person's guide to MS. Multiple Sclerosis Trust

19. Support • Need encouragement and support • Sometimes more than one family member needs support at same time • Ignoring or hiding feelings makes it harder to work them through • Need to acknowledge different coping strategies

20. Key points • Support for family can involve a wide spectrum of professionals and agencies • Both statutory and voluntary • Aim for a co-ordinated approach that addresses the needs of the entire family

21. Intervention • Recognise the grieving process which goes along with MS losses • Find ways to alter family identity to accommodate the “uninvited guest” • Keep as many shared goals as possible • Encourage family members to keep their chosen activities going without guilt

22. Family coping strategies • Consider accepting support • Talk through problems – individually or as a family • Protected family time • Value everyone’s opinions • Plan for activities to look forward to • Communication and listening • Shared interests and activities

23. Crisis contingency plans • Advance problem solving • Identify fears • Think them through • Research and plan • How to deal with them

24. Find ‘MS Free zone’

25. Other useful resources • Childline 0800 1111 • Samaritans 0345 90 90 90 • Carers Line 0207 4908818 • Anti Bullying Campaign 0207 378 1446 • NSPCC National Child Protection Helpline 0800 800 500 • Careline 0208 524 1177

26. Parenting support/information • Disability, Pregnancy and Parenthood International National Centre for Disabled Parents, Unit F9, 89/93 Fonthill Rd, London, N4 3JH Tel 0800 018 4730 • Disabled Parents Network PO Box 5876, Towchester, NN12 7ZN Tel 0870 241 0450 www.disabledparentsnetwork.org.uk • Parentability National Childbirth Trust, Alexander House, Oldham Terrace, Acton, London, W3 6NH Tel 020 8992 2616

27. Parenting support/information • Parents with Disabilities online www.disabledparents.net • Pregnancy factsheet MS Society leaflet, MS Society, London • Radar 12 City Forum, 250 City Rd, London, EC1V 8AF www.radar.org.uk • National Family and Parenting Forum www.nfpi.org.uk www.parenting-forum.org.uk

28. Conclusion • Parents with MS may need support and practical advice/assistance • Children whose parents have MS can undergo role changes, and it is the responsibility of HCP’s to be aware of this and include the child in their assessment • Health care professionals are in an ideal position to provide this information and help to establish support networks

29. Local and national resources available for carers • www.carers.gov.uk • www.carers.org • www.carersonline.org.uk • www.crossroads.org.uk • www.carersinformation.org.uk

30. Further Reading • Kalb RC (2000) Multiple Sclerosis and the Family in Multiple sclerosis Diagnosis, Medical Management and Rehabilitation. New York Demos • Kalb RC & Miller D (2000) Psychosocial Issues in Multiple Sclerosis-The Questions You Have the Answers You Need 2nd ed. New York Demos • Newby NM (1996) Chronic illness and the family lifecycle. Journal of Advanced Nursing. Vol. 23:786-791 • http://www.childrenssociety.org.uk/youngcarers/professionals_principles.htm Principles for Work with Young Carers and Their Families • http://bama.ua.edu/~ander016/parentin.htm Parenting With a Chronic Illness