Do you have feelings of guilt?
Can you hear yourself saying or thinking the following?
- “Other carers seem to manage better than me.”
- “Why was I so hard on them, it’s not their fault.”
- “Please don’t make me do this anymore.”
- “I promised them I would never put them into care and I have”
- “Respite sounds amazing but I can’t leave them with anyone else”
- “Is it bad to want to spend time doing something else”
- “I am neglecting my work, my relationships, my children … “
That’s right, that is guilt talking.
What is guilt?
Generally guilt is defined as an emotion which people can feel after doing something wrong – whether this is done intentionally or accidentally. Guilt often relates to a person’s moral code which has developed over many years.
The trigger points which create feelings of guilt for carers of people with dementia are often:
- at the point of diagnosis
- when decisions around care need to be made
- when you are feeling unable to sufficiently comfort or reassure the person you care for
- whilst telling white lies to either comfort, reassure or even to keep the peace
- if faced with situations which create feelings of irritation / anger
- as you start to feel differently about your relationship with the person you care for
- when you begin to feel a sense of wanting to get out / escape
- as your interactions with family members become difficult due to differences of opinion or because you are unable to talk openly and honestly about how you feel
Why do we need to tackle guilt?
Guilt can be so overwhelming for a family carer that it can cause physical symptoms such as trouble sleeping, stomach pain, stomach upsets and nausea (or other digestive issues), as well as muscle tension, headaches and migraines, tearfulness… to name a few!!
What can you do to help yourself?
It is little wonder guilt has been shown to be associated with depression in the general population and is a common experience of caregivers.
To help you to re-calibrate your feelings, and to think about whether you are carrying an unhealthy amount of guilt, it is important to ask yourself a number of questions. These may include:
- Is this a fact, or just my opinion?
- Why am I so certain of the conclusion I have reached?
- What assumptions am I making?
- What evidence is there to support / dispute my thinking?
- Am I accepting responsibility for something that is not my fault or within my control?
- What advice would I give to a friend who was feeling this way?
- What are some other ways of viewing this situation that might be kinder, more realistic or more helpful to me?
- How will I feel about this in 1 week / 1 month / 1 year?
- What can I do to cope and look after myself now?
By asking yourself these questions, you may find that you start to show yourself more self-compassion and we hope that it will help you to see you are probably doing a fantastic job during some exceptionally difficult times.
We would also invite you to give this list of questions to someone who you know, and ask them to go through them one by one with you.
You are not alone
Support groups and forums can also help you to recognise that other carers have similar feelings and are challenged by similar issues. This can help you to realise that ‘Other carers seem to manage better than me’ just isn’t true and that is it possible to become kinder to yourself, more realistic and able to cope.
Lissy Edwards is an experienced speech and language therapist who has worked extensively in the NHS specialising in the rehabilitation of people with brain injury, stroke and other long-term conditions such as dementia. She is highly skilled in the assessment and management of swallowing and communication difficulties and enjoys working in collaboration with patients and families.