Carers: looking after yourself

5. Caring in the later stages

Moving the person into a care home

When a person with dementia moves into a care home, it can have a big impact on the carer as well. You may worry about how the move will affect the person with dementia, and your relationship with them. You may also worry about the impact it will have on your own life, especially if you have been caring for the person for a long time.

Some carers feel they have let the person with dementia down when they move into a care home, feeling that they should have been able to cope for longer. Some carers may also feel guilty that the person has gone into a care home, especially if they had promised the person they wouldn’t be placed in one. This can be difficult to deal with, but you shouldn’t be too hard on yourself. These decisions are often due to circumstances outside of your control, and you should remind yourself that you are doing what you think is best for the person you care for.

The move to a care home can also raise questions about your role and whether you are still needed. When the person you care for moves into a care home it will change your relationship. However, it doesn’t mean the person with dementia no longer needs you, or that you won’t be involved in their care (unless this is what you want).

Speak to the care home about ways you can help the person and, by doing so, help to maintain your relationship. Some carers find their relationship with the person improves when they move into a care home, because they can focus on their relationship and not on the day-to-day aspects and stresses of caring.

If you have any of these feelings, it is important for you to address them and seek support. This may be from family and friends,a support group, the care home or a professional (such as a dementia specialist nurse or support worker).

When your caring role ends

Dementia is a life-limiting illness and there will come a time when your caring role comes to an end. This can be a very difficult time, as you are grieving for the person who has died, as well as coping with the end to your caring role.

You may have lost contact with friends and family and find it hard to get back in touch with them. Or you may find it hard to adjust to not being a carer anymore, because you have thought of yourself as a carer for so long.

It may be worth spending some time thinking about the future, and what may happen when you are no longer caring. Try to find the details of carer’s organisations – they can provide information and support to help you adjust when the time comes. For more see ‘Other useful organisations’ and our page: Grief, loss and bereavement.