11. Care Options and Considerations
Care support of a different kind can sometimes be offered by hospices. Hospices can offer support over a period of many months or years not just at the end of someone’s life. Each hospice is different, and may offer variable services, but their support can range from attending a course on planning ahead, weekly sessions at a day hospice, an inpatient stay for symptom management or end of life care (in the hospice or at home). Hospices may offer access to counsellors who can support the whole family unit. Your GP or another healthcare professional can refer you for hospice care support.
The term ‘respite care’ can have a variety of meanings. It usually refers to a break for a carer from their day-to-day caring responsibilities. The break could be anything from a couple of hours to two or more weeks. It is very important to recognise that respite care is going to be important, especially if one person acts as a main carer. They need time to recharge their batteries, follow their own interests, see other people and rest. Caring can be extremely tiring and carers risk ‘burn out’ which often results in a crisis. Respite care can be provided in a variety of settings, including your own home. It may be provided by paid carers in their work setting, or in your own home which could also be provided by family members or friends. It should be scheduled in and form part of a care plan.
Some people living with MSA will need, or choose, to move into a nursing home. Ideally this will be to a home of their choice at a time of their choosing. How this type of care is funded varies so do seek information about this at an early stage so that you have an understanding of the system in your area.
From the outset carers should have their own needs considered – as a carer you may have to be proactive about this. We have a Carers Guide which you may find helpful and can be downloaded here – https://www.msatrust.org.uk/support-for-you/factsheets/.
Request that your local authority assesses your needs, make connections with other carers (perhaps via a carers centre) and above all be open about your concerns and your limits. Like the person you are caring for your needs should be reviewed regularly. As time goes by the needs of the person living with MSA will undoubtedly increase and will become 24/7 meaning no carer can cope unaided. As mentioned above, creating a circle of support is key. Try to ensure you have a team of key professionals to call on. MSA is a rare condition so planning ahead, being prepared and knowing what to expect can help reduce stress and a crisis.
- Respite care is essential for carers
- Seek advice on care support options and review these on a regular basis
- Understand the likely progression of MSA and the increase in care needs.
The MSA Trust is here to support anyone affected by MSA. If you have any questions about the information on this page, please contact us and we will do our best to help you.