For people who understand what it means to be a carer, carers are heroes who have accepted an enormous burden, often giving up their lives or putting them on hold to ensure the wellbeing of the person with dementia. However, instead of being satisfied with what they have done, many carers will talk about the guilt they feel because they should have done more or behaved differently at various times.
One source of guilt is the thought of what it’s like to be a person with dementia, alone inside their confused mind. Many carers felt guilty that they had put their relative into residential care. Carers felt guilty if they took a break, leaving someone else to do the caring. They felt guilty for having made decisions behind their relatives back. Guilt that they hadn’t been able to do more. Guilt that they had resented the changes caring had to their normal life due to caring. Many felt guilty when they remembered the way they had reacted to unusual behaviour before they were aware that it was caused by illness.
Regrets his lack of patience when his wife first showed symptoms of Pick’s disease.
One woman had met her husband in later life. She felt guilty that, when unattractive traits appeared as a result of his illness, she suspected he had never actually been the loveable man she thought she had married.
One carer who describes the terrible sense of loss he feels now that his wife is in care and rarely recognises him, tells carers that they should never feel guilty.
Recalls the feelings she had about her husband before she understood that he was developing Alzheimer’s disease.
Describes his wifes moments of lucidity and exhorts people not to feel guilty for their deficiencies as carers.
One possible source of guilt was the fact that carers had found it necessary to lie. For some it was a matter of principle that they avoided lying if at all possible. For instance, one husband described how he had not been prepared to give his wife medication, particularly sedatives, without explaining to her why he was doing it.
Describes his reluctance to be underhand with his wife.
Several carers described how they used white lies when asked by the person with dementia what was wrong with them. Others described using lies to avoid upsetting their relative, for instance, when asked when their next visit would be. There was a strong feeling that the memory of an upsetting bit of information was much more likely to be hung onto than the number of days between one visit and the next. One woman described her worst lie which was her cutting up of her husband’s credit cards to save them both from financial disaster.
Realised that though she tried to be totally honest with her mother it was not always appropriate.
Alongside guilt come regrets. Thinking of things which might have been done differently. The daughter who can’t get over feeling that she should after all have found a way to have her mother live with her. A husband who had lovingly cared for his wife until she died, looking back, regretted that he hadn’t been able to do more for her.
Regrets that she couldn’t devote herself more completely to caring for her mother.
Regrets he couldn’t make his wifes life better as her dementia became more profound.
Perhaps the most painful emotion described by carers is the sense of loss for a future they had to forego. One carer described recognising this was a terrible grief, and a lingering bereavement. She found it helpful to face up to the feelings she developed through living with someone with dementia and to accept that she sometimes had to allow someone else to take over her role as carer.