Response

Response #

168

Person who died

Aunt

Category

Current experience of grief

Respondent details

35-44 | Female | British

Q1: What was the nature of your relationship with the person who died?

My aunt. She was diagnosed with dementia in 2010 at the age of 73 and lived with me before going into a care home in 2013.

Q2: How has the person’s death affected you during the hours, days, and weeks that followed?

It has been a real rollercoaster. I sat with her for her final 6 days and was with her when she passed. Initially I felt relief that she was no longer suffering and then immediate guilt for thinking like that. I planned the funeral and service but again this was difficult because of restrictions of COVID. The whole process of the funeral and then sorting out her affairs has been surreal. Today has been the first day since she passed where I have actually had time to think and have broken down.

Q3: How, if at all, have your relationships with other people (particular individuals and other people in general) been affected by the bereavement?

My relationship with my Mum and Dad has been strained. Although we are very close I have at times been quite angry with them and have been short tempered - I think this is because I was the only one who visited her and did most of the caring in the last few years. I have found it difficult to show emotion around them in case I upset them further.

Q4: Does the surrounding world seem any different to you while grieving? If so, how?

Yes, I feel numb. It has made me reflect a little bit on the last 21 years and look towards the future. I am not sure what is going to happen next or how my life is going to move forwards. It is a very strange feeling of uncertainty.

Q5: Has your experience of time changed in any way?

Yes, I am struggling to sleep and find the nights are so long.

Q6: Has your body felt any different during grief?

Just sore irritated eyes.

Q7: Has grief interfered in any way with your ability and motivation to perform various tasks, including paid work?

Difficulty concentrating at work. I find it really hard to think about what I am doing and be able to ‘perform’ to the best of my ability, especially when I am delivering training.

Q8: Is your experience of grief changing over time? If so, how?

In the first two weeks I was so busy with organising things and sorting papers and funeral plans etc that keeping busy meant I had focus. However, today is the first day I have been able to reflect a little and think what next. This has scared me too - I don’t really know where or what I am going to do next.

Q9: Have you ever found yourself looking for the person who died or expecting that person to appear?

No but I have dreamt about them much more frequently since they passed away

Q10: Are there times, places, and occasions that have made you especially aware of the person’s absence?

Yes, when her favourite music has come on the radio, collecting some of her things, her birthday was two days after she passed away. Seeing one of her old friends

Q11: People who are grieving often report experiencing the presence of the person who died. Have you had any experiences that you would describe in those terms?

Sometimes I think I can smell the hairspray she used to use.

Q12: Do you still feel a sense of connection with the person? If so, could you say something about when you feel this and what the experience is like?

Yes, as mentioned above. I have dreamt more frequently about her.

Q13: Since the person died, is there anything that you have been doing in order to feel close to them?

Recalling happy memories with family and looking through old photographs.

Q14: Is there anything that you do in order to avoid being reminded of the person or of their death?

Q15: Has anything in particular helped you to cope with grief? Has anything made you feel better or worse?

Q16: How understanding have other people been? Have others said or done anything that you've found especially helpful or unhelpful?

I have felt that some family members have been quite disrespectful. Work colleagues have been great - they have given me time to do what I have needed to and sent me messages which have been so supportive. They haven’t asked exactly how I am but instead sent their wishes and thoughts. I have found that some people have a certain tone and gesture when they are talking to me for the first time afterwards. For example their head tilts to one side, and they always start a nod “how are you doing?” Which can be annoying.

Q17: How, if at all, has your experience of bereavement changed you as a person?

I don’t know yet - At the moment I am feeling a bit scared of the future. I don’t know what I want or who I am any more. I think I am still processing what has happened and I am sure it is going to have an effect on the way I see things moving forward.

Q18: How, if at all, does grief over the death of a person differ from other forms of loss that you have experienced?

This is a very interesting question because caring for someone with dementia for so long has made me think about losing that person for a very long time, however when they actually passed away I have had some very mixed emotions that I didn’t expect to have. At first relief that she is no longer suffering, then guilt for feeling the way I did. Then just complete emptiness and sadness. Whereas each week when I visited her I felt that another part of her had slowly gone. She was there in body but was not the person she once was. After she has passed away it is almost a release of the actual illness and all the nasty times can then be forgotten and the true memory of her can be once again remembered. It is a very strange feeling.

Q19: Are there any aspects of grief that you find particularly puzzling or difficult to put into words?

Q20: Are there any important aspects of your experience that we have not addressed?

I was a little surprised at the lack of information and emotional support from professional people (nurses and health care assistants) during the end stages of her life and after she passed away and the support for the family. This was the first time that I have been in this situation.