By Jacquie Pond

Most people feel guilty if they have done something wrong or made a mistake that they regret. I am a Wayfinder with Dementia Support, and the subject of feeling guilty comes up a lot in conversations with my customers.

I want to explore the reasons why people living with dementia experience a misplaced, deeper level of guilt that can often cause emotional distress. I also want to suggest some ideas on how to reach an understanding on why those destructive thoughts and feelings can emerge.

I Feel Guilty Because…I Am A Burden to My Family

I support Steve who has been diagnosed with dementia and is in his early fifties. When we first met, Steve had just been diagnosed with dementia and was coming to terms with a multitude of life changes, he could no longer drive, no longer work, he could no longer provide the main wage for his family and was lost to where he fits within the family dynamics. Steve was very stressed about being a burden to his family, he could see the worry in his wife’s face and felt powerless to change it.

Every time Steve and I talk he is always focussed on how his diagnosis has affected his family and he can only see a bleak future, becoming more dependent on his wife and children. He struggles with overwhelming feelings of guilt about this. Steve is in fact grieving for the life he had before he was diagnosed, when he felt in control and supported his family both emotionally and financially, he doesn’t want his family to become his carers.

Steve and his family are all coming to terms with the shock of his diagnosis and the Wayfinding team at Sage House are with them every step of the way. Slowly but surely, they will reshape their lives together positively and by talking to each other as a family they will recognise and minimise the guilty feelings.

I Feel Guilty Because… I Resent My Wife

Joe has been married to Sue for over 50 years and Sue was diagnosed with dementia 5 years ago. They have been regulars in our Sage House café and before lockdown Sue was coming to our Daybreaks service giving Joe some respite time during the day.

Lockdown has had a huge impact on our customers, the confinement is confusing and stressful. Joe called me because he was exhausted, Sue had not slept more than 3 hours a night for over two weeks and they were shielding. Joe told me he wished Sue could be whisked away just for a few days so he could get some sleep and he was resentful that dementia had happened to them. He told me Sue is not his wife anymore and was getting irritated by everything she said and did. Sue was constantly on the move looking for her parents and wanting to leave their home to find them. Joe is a loving, kind man and he had tried many tactics to calm Sue but not much was working, her anxiety levels were high and climbing.

Sue reached a critical stage and was admitted to hospital with an infection. Joe called me and was very upset because he felt his resentment towards Sue had made her ill, and when he had told me he wanted his wife whisked away he had created this situation, and ironically, could not sleep because he felt so guilty about what he had wished for. Of course, that’s not how it works, and Joe is a prime example of what family carers experience when they are caring for a loved one with dementia.

Sue is back home with Joe and we talk several times a week, I remind Joe he is a loving caring husband and nothing to feel guilty about and whilst Sue cannot articulate this, she feels Joe’s love and loyalty.

I Feel Guilty Because…I Don’t want To Care for My Dad

One of the dilemmas families face is when an older parent living alone and independently begins to struggle with everyday tasks and short-term memory issues.

Gemma is a working mum and lives a few miles from her dad who has lived alone for over 20 years. she has always had a close relationship with her dad, he is a lovely grandad to her teenage children. Whereas Gemma’s brother lives abroad. George is sociable and belongs to a variety of groups and clubs. In the last 18 months George has stopped playing golf, he doesn’t want to go out and in a slow, gradual way he has retreated and calls Gemma many times a day to ask the same questions. When is she coming to see him? Why isn’t his cooker working? What’s happened to all his money? Gemma has found these calls very worrying and has got into many arguments with her dad because he wouldn’t go to see his GP.

George fell off a ladder last summer and was admitted to hospital, the medical team in A&E picked up on how confused George was and told Gemma he probably had the early stages of dementia and referred George to the NHS memory assessment clinic. Gemma has spoken with me about her thoughts and feelings. She is very scared and stressed that she will need to care for her dad as Gemma cared for her mum when she was ill and doesn’t want to be her dad’s carer. Family history often plays a part when dementia is diagnosed within a family and Gemma should not be judged for feeling this way.

She asked me if it’s wrong to feel angry with George when he calls her for the 15th time that day during a rare family meal? She feels like she is a bad daughter because she doesn’t call him or see him and then has a rush of guilt and love for her dad when he says to her “I don’t know what I would do without you Gemma”. None of this is wrong, none of us are saints, we are human beings all coping with everyday pressures (particularly at this current time).

Feeling Guilty? Try this

It really is ok to feel this way. Just recognising your guilty feelings and why you have them really helps with your wellbeing.

Try writing to yourself, it might seem pointless at the time but putting your feelings into written words can reduce your anxiety.

Try writing to the person you care for. A letter to your loved one talking about the everyday stuff that there is no longer the inclination to talk about and reminisce the times you’ve shared laughter. Writing down your thoughts is a great reminder of how important you are to each other.

It should never be about guilt, whatever you are doing, you are doing your very best.

Talk, talk, and more talk. The Wayfinding team are here to listen, please call us if you need to talk or need advice on 01243 888691.

If you missed Part One of Jacquie’s blogs exploring grief, you can read it here