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Penny looks at the camera with a dark backdrop

Let’s talk about guilt – Penny’s experience

Penny talks about the guilt she has felt surrounding her mum’s move into residential care.

Penny is the primary carer for her mum, Rosemary, who was diagnosed with mixed dementia in 2016.

When Mum was diagnosed, one of the first things we did was visit a care home. I’m not sure what prompted this, maybe that it would be good for us to see one together while she was still well. Deep down I think we both knew going into full time care eventually was a possibility. Perhaps I was also looking for her blessing? We did both agree we hoped it would not be needed and she made it clear then that her preference was to stay at home. That then became my goal. To keep her at home for as long as I could.

I was devastated when I realised a care home was the only option we had left. I tried so hard to keep Mum at home but even with 24-hour care, things were not working. I was tearful and heartbroken. Everyone around me, from healthcare professionals to close family, told me a care home was the only way forward, but it was still so hard to accept. I did not want to be the one to call time. It felt like a huge decision to take on someone else’s behalf.

Penny and her mum, Rosemary

Penny and her mum, Rosemary

Despite trying to explain to Mum that she was moving to a care home, she did not remember on the long journey there. She thought we were on a lovely day out, a drive in the country. That made it all so much worse. I was overwhelmed with sadness and guilt. She was horrified when we got there and initially did not settle well at all. That just compounded everything I was feeling.

Even though I have now found the right care home for her, the feelings of guilt don’t go away. I feel it is my fault that she is not at home with her things, even though logically I can see that would be impossible now. I visit her every week, but I worry all the time about whether I’m seeing her enough. She does not recognise me as her daughter, but she knows I’m someone she cares about. I am fearful that if I don’t go as much, she will forget me altogether. If I ever have to miss a week, I feel terrible about it.

I try to consider what I would say to someone else in the same situation as me. I would reassure them Mum is in the right place, that her needs are being met and that I didn’t have the right skills to keep her safe at home anymore. Seeing that she is content and settled in the care home helps hugely and gives me some peace. More than anything, I hope Mum would think that I’d done the right thing.

Chief Admiral Nurse and CEO of Dementia UK Hilda Hayo

"Penny highlights the guilt that is felt by a family when they must make the very difficult decision to place a parent or partner into long term care. The decision can be made even more difficult when promises have been made never to do this or when family members disagree that this is best for their family member."

Hilda Hayo, Dementia UK’s Chief Admiral Nurse and Chief Executive Officer, reflects on Penny’s experience.

Hilda Hayo, Dementia UK’s Chief Admiral Nurse and Chief Executive Officer, reflects on Penny’s experience.

“Penny highlights the guilt that is felt by a family when they must make the very difficult decision to place a parent or partner into long term care. The decision can be made even more difficult when promises have been made never to do this or when family members disagree that this is best for their family member.

“In my experience it is very difficult for family to identify the “right time”, which makes the decision even more complex. Families do not make the decision about long term care without having tried many other ways to support their loved one safely in their own home. There comes a point when even with the most inclusive care package they cannot meet the person’s needs, which could leave the person with dementia at risk. In my experience the family carer often risks their own health and wellbeing before they decide that long term care is necessary.

“The advice and support of a specialist dementia nurse (Admiral Nurse) can be very helpful in talking through these issues and feelings of guilt that can occur due to the decision that is made. Also highlighting to the family that just because someone goes into a long-term facility it doesn’t mean you don’t care. In fact many people say that it increases the quality time they can spend with their family member so the quality of life for both is improved.”