If you are newly bereaved
Losing someone close to you can be 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 matter. There is no right or wrong way to feel following a death.
Our Bereavement Support page has information on practical issues and sources for support for when you’ve lost a loved one.
Immediately after someone’s death there are a lot of practical things to do, like registering the death and arranging a funeral. Family and friends also 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 concerns 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.
Adjustment
Everybody will have different ways of coping with life following the loss of the person they cared for. People adapt in their own time so don’t feel that you are under pressure to do anything you don’t feel able to or in a particular timeframe.
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. There will come a time when you are ready to think about what to do next with your life.
Keeping in touch with friends, family and your local community might have been difficult when you didn’t have as much time for yourself. This may have knocked your confidence but there are ways to start making connections again.
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 give, 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.
Some people volunteer with 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 MSA Support Groups, or raising much needed funds. For details of opportunities please click here. As a guide, volunteering activities that involve substantial contact with people affected by MSA, are not appropriate for people who have been bereaved within the last 6 to 12 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 every other year, with the location changing each time. 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.