Feelings after a person with dementia has died

We talk about what you might be feeling when a person with dementia dies, and share some tips for coping and readjusting after bereavement.

Coping with the death of a person with dementia

Everyone copes with bereavement in their own personal way, and there is no right or wrong way to react. How you feel after a person with dementia has died will be affected by different things, including:

  • your relationship with the person
  • your life circumstances and personality
  • how much you’ve already grieved while the person was living with dementia and how you responded to changes while caring for them
  • the circumstances around the person’s death – how and where they died, as well as whether you were able to say or do the things you wanted to.
Discussions about Grief and Loss in our online community, Talking Point...
Discussions about Grief and Loss...

How you might feel

When the person dies, it can feel like a turning point in your life, especially if you have been the person’s main carer. You may feel a range of emotions after bereavement, some of which may even be positive. Feelings can include:

  • shock and pain (even if the death has been expected for a while)
  • sadness
  • numbness, as though you can’t feel anything at all
  • being unable to accept the situation
  • anger and resentment
  • guilt
  • lack of purpose
  • relief, both for the person with dementia and for yourself.

Bereavement can leave you with a sense of emptiness. This can be for different reasons, such as struggling to come to terms with the loss of the person or missing your role as a carer.

You might feel like you have too much free time (especially if you’ve lost past interests and hobbies), or you might have lost touch with other people while caring. All of this can add to feelings of loneliness and isolation.

It’s not unusual to think you have heard the person’s voice or seen the person after they have died and while you’re grieving. You might also dream about them and find yourself thinking about the past or events just before and after their death.

Sometimes when a person dies, those close to them may not fully grieve at first, and it can take a long time for feelings to come out. This is called ‘delayed grief’. It may happen because:

  • it takes a while to accept the person has died
  • the feelings are so overwhelming that it’s not possible to process them at the time
  • there are so many practical things to do and arrange that there isn’t time to grieve.

Delayed grief may especially happen if you have cared for the person for a long time.

Readjusting after bereavement

Grief can be complex and difficult, and it can be hard to adjust to living without the person. Take some time to reflect and come to terms with your situation, but try not to become isolated. It can help to talk through your feelings with someone you trust.

Some people find speaking to professionals can be a very helpful way of processing their feelings and finding a way forward. There are many organisations that offer grief and bereavement support, including Cruse Bereavement Support, Dying Matters and Sue Ryder. For more information see Useful organisations.

Try to stay in contact with your GP and tell them how you are feeling physically and emotionally. After a bereavement you may be more vulnerable to physical and psychological illness such as viruses, anxiety, stress and depression.

Your GP can look at ways to help, including medication or referring you for talking therapies. The coronavirus pandemic has caused longer waiting times at some surgeries so bear this in mind when trying to book an appointment.

It’s also important to look after your spiritual and religious needs. Many people find these practices helpful and a source of comfort after a bereavement.

Life does not just go back to being the same after bereavement. In time, you may find that the pain eases and you feel ready to cope with life without the person who died. Some carers find readjusting easier than others. How long it takes will vary from person to person, and there is no ‘right’ length of time.

  • Be kind to yourself. Allow yourself space and time to grieve.
  • Try to eat properly and get enough rest (even if you don’t always manage to sleep).
  • Take things slowly and ask for help and support if you need it. Tell people what you need – if you don’t, they may not know how to help or they may not feel comfortable offering.
  • Try to do things with other people. You could start doing past interests and hobbies again, or consider starting new ones.
  • If you’re struggling and time doesn’t seem to be helping, you may want to think about asking for professional support.

If you’re worried that you will forget the person over time, there are things you can do that may help:

  • When you feel ready, talk to friends and family about the person who died, and reminisce about the life you shared.
  • Create a photo album or a file of digital videos of the person.
  • Keep some of the person’s belongings.
  • Do something in memory of the person. This could include:
    — arranging a memorial gathering for those close to them
    — organising a tribute to them on social media
    — planting a tree in their name
    — taking part in an event such as a Memory Walk.
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