When someone in your church or someone’s husband, wife, son, daughter is diagnosed with dementia; often loved ones begin to go through the grieving process. There is a real sense of loss of the person that was as the illness progresses. There are two types of grief to be aware of that may be experienced following a diagnosis of dementia.
Grief in Anticipation
This is where the experience of grief for losses that are anticipated in the future. There may be things they dread, for example many families dread their loved one not being able to recognise them or remember them.
Grief at a living loss
When the person is physically present but psychologically or emotionally absent this often brings the feeling of loss. For example, when the person with dementia is physically alive but no longer able to participate in conversations like they used to or have the same role in the family they had before their diagnosis.
Both of these types of grief are often difficult to recognise and acknowledge. Yet they are a normal response for some people where a family is supporting a person with dementia. It is important that the church leader or pastoral care team can recognise these types of grief and seek to support their congregational member through this time.
What can you do to help?
Help them to accept their feelings.
Bottling up feelings doesn’t help, let them know it is alright to be as sad as they want. Let them know that it is OK to work through any anger and frustration they feel. These are healthy emotions but need to be released sometimes. Let them know it’s common to feel conflicting emotions and okay to feel love and anger at the same time.
Help them to be prepared to experience feelings of loss more than once
As dementia progresses, it is common to go through feelings of grief and loss again as different symptoms bring new areas of loss that need to be adjusted to. Help them to accept and acknowledge their feelings as this is a normal part of the grieving process.
Encourage them to talk to someone they trust about their feelings
This can be a good friend, another family living with dementia, an understanding professional, or supportive members of your church family.
Encourage them to relieve tension
Crying or going for a long walk or run can help as it relieves tension. However, it is important that you stress that this should be done away from the person with dementia as this may lead to them feeling distressed. Do something fun, get some exercise and importantly, get them to treat themselves regularly. If you can arrange for someone to just sit with the person living with dementia to release some time of respite for the primary carer this really helps.
Let them be aware that people may not understand their grief, but you do
Most people think grief happens when someone dies. They may not know that its possible to grieve deeply for someone who has a progressive cognitive illness. It really helps someone going through this grief if they feel that there is someone that they can turn to who understands their grief.
Help them to combat feelings of isolation and loneliness by ensuring they can still be involved in church life
Caregivers often are forced to give up the things that they enjoy as they have to stay at home and care for their loved one. Try and keep services and groups Dementia Friendly so that they remain open for them. Have a team of Dementia Friend volunteers in each group and as Lay Pastoral support so that they can come along with their loved one and still feel connected and supported. Encourage them to meet with friends to do something enjoyable. Taking a break will help them to recharge and cope through the harder days. It is so important that the church helps them to stay involved in the activities they enjoy. Also ensure you and your pastoral care team drop in for a chat or phone regularly.
Help encourage them to seek information and support
Accessing information about dementia and finding support services for them and the person with dementia can be a vital step. Family carer support groups, memory lane groups, social clubs, singing for the brain groups, day centres and home care can help you to build a support network for everyone.
Make sure they see their GP
If they’re feeling very low, anxious or showing signs of being tired and unable to sleep encourage them to go to the doctor. It is really important to try and prevent normal feelings of sadness slipping in to depression, which is much harder to deal with. The GP is there to help so encourage them to visit, even if you volunteer to sit with their loved one whilst they go.