MSA Trust

Former Carers

If you have just recently lost a loved one, or you are adapting to life after bereavement a while ago, this section can offer you information and support.

Newly bereaved

Losing someone close to you is devastating. If you have been caring for that person, the loss can seem even greater. How you cope with the death of the person you cared for is a very personal thing. There is no right or wrong way to feel following a death.

Immediately after a death there are a lot of practical things to do, like registering the death and arranging the funeral, and family and friends tend to be around a lot more. It may be that only when all the practicalities are dealt with, and the people around you get back to their everyday lives, that you really start to grieve.

This link takes you to the Carer’s UK website and gives information which may help you think about some of the practical issues to address. It also highlights some of the emotional issues you may face when the person you have cared for dies. At the bottom of this webpage you will find our ‘Bereavement Support’ section which includes links to organisations providing different types of support.

As MSA is such a complex and challenging condition there may be things that you would like to discuss with our MSA Health Care Specialists after bereavement. Don’t forget the Trust is always here to support you so please contact us if you need help.

Adjusting to your new life

Everybody will have different ways of coping with a life on their own. People adapt in their own time so don’t feel that you are under pressure to do anything you don’t feel able to.

Caring for somebody with MSA may have taken up much of your day. You may now find that although you have more time to yourself, giving you the opportunity for a rest, it can also leave you with a lot of time to fill.

If you are used to always having things to do, it can be hard to stop and think about what you would like to do, and to be able to make choices for yourself. Some people find that once they are no longer caring, exhaustion – both physical and emotional – catches up with them and they may feel unwell for a while.

Having spent time caring for someone else and putting their needs first, it is really important to look after yourself and let other people look after you.

What next?

It can take a while to come to terms with such a major shift in your life circumstances, but there will come a time when you are ready to think about what to do next.

Keeping in touch with friends, family and your local community might have been difficult when you didn’t have much time for yourself. This may have knocked your confidence but there are ways to start over. It is worthwhile finding out what help or services your local carers’ organisation or group offers to people whose caring role has come to an end.

They will be used to helping people in your situation and sometimes it can be good to be around others who know what you are feeling.

If you have time to spare, you could consider volunteering. As well as offering much needed help to local people or organisations, volunteering can be a very social activity, and can be a good way to meet new people.

Volunteering opportunities can range from befriending older or disabled people, offering your skills (for example, administration, fundraising, legal advice etc.) to a local charity, to helping out on a local conservation project.

Some former carers volunteer for us at the MSA Trust, using their experiences to help others. This can be by raising awareness of MSA in their local community, helping out at or running MSA Support Groups, helping others on our MSA HealthUnlocked Community or raising much needed funds. For details of opportunities please click here. Please note that as a general rule, the Trust suggests that for activities that involve substantial contact with people affected by MSA volunteering is not appropriate for people who have experienced bereavement within the previous six months.

Learn something new

You may feel that you would like to refresh skills that you have not used for a while, or learn something completely new. You might have gained new skills or interests from your caring role that you also want to pursue. Taking a course can also be a great way to meet new people.

Contact your local library or adult education centres to find out about courses in your area.

MSA Candlelight

The MSA Trust runs an MSA Candlelight event once a year with the location changing each year. These offer the opportunity for people to come together to share memories of their loved ones and to dedicate a candle to them. Please look on our calendar for details of these events.

At the bottom of this webpage you will find our ‘Bereavement Support’ section which includes links to organisations providing different types of support.

Bereavement Support

Bereavement affects people in different ways. There is no right or wrong way to grieve....