Post No63...Grieving and dementia; a collaboration with Sylvia Brydon-Stock.

Introduction

Very often, when we talk about grieving and dementia, we are referring to the grief of the carer / loved ones; and rightly so. For these folk, the grieving process is excruciatingly long, and often families are grieving even though the person is still alive, because although they are there in body, they are no longer there in mind, as what makes them whole has been sadly taken away.

But, do we also consider if / how a person with dementia grieves? Between Sylvia and I, we do not think this happens as often as there is little research or online tools that we could easily find.

As a result, we have crafted this post on our thoughts on the early stages, and later stages, of dementia and grief.

Earlier Stages – by Sylvia Brydon-Stock

How does someone on the Dementia journey deal with grief?

Is it different to any other of us?

How do we help someone in this situation?

Should they attend the loved one’s funeral?

Supporting someone grieving loss who is on the dementia journey can be very different to others. Even in the earlier stages of dementia, early confusional states of mind will cause them to flit between knowing their loved one has died and asking where they are. Telling them their loved one has passed from this earth may help for a while, but confusion will set in again and they will be asking where they are.

In the earlier stages the realisation that they are not coming back can be acknowledged along with accompanying fixation around the events that took place following the passing of their loved one. For example, if there was a memorial service they had attended, comfort can come from carrying the order of service with them to talk about with all who they come across.

A resident in a care home I have supported was a regular church member with her husband and is taken to church every Sunday morning which helps her grieving. She loves the interaction with those she has known along with ensuring the vicars speak with her as this is a fixation she has as she recalls their comfort and support.

Grief can exacerbate the dementia progress as they try to process what has happened and life without their loved one. Carers need to be very sensitive to their sorrow and show extra patience with them.

 Later Stages - by Chris Roby

In the 10 years I have worked in care homes, I have attended many resident's funerals. These are, of course, very sad occasions although families often take comfort from the closure they can bring. However, for those who remain, we do not forget….or do we?

For those living with dementia, they can, and do, forget they have attended a funeral, or that their loved one has passed. Families are often left feeling very unsure how to approach this, and often ask the home for advice.

It does depend on the exact nature of the situation of course, but the advice is normally for the person living with dementia to be told, only once, the sad news. The notion of repeatedly telling them is not always a good idea; this is based on the concept that although the memory is forgotten, the feeling remains, meaning people will feel sad but not know why.

Sometimes, when attending the service, people living with dementia may be unsure why they are there, or whose service they are attending. It is important not to contradict people who are living with dementia, meaning it is important for family members to ‘go with the flow’ in this type of situation, as opposed to the constant reminder that a loved one has passed.

Grieving, therefore, is a strange process for those with dementia. They will grieve, and feel sad, but not know why. This feeling may last for a while, but once it has passed the person’s grief will cease, as the root cause is forgotten.

Although memory loss is one of the key symptoms of dementia, so too is confusion, which sometimes can mean people believe their loved one is still alive. This could be because they also believe they are a younger version of themselves, say in their 20’s, because all other memories have been erased.

Again, the training we receive in care homes is not to contradict this thought process, meaning rather than grieving, the person may be left confused or anxious as to why there loved one is not around. This can be distressing for families, but the alternative of a constant reminder may only bring the very rawest feelings of grief to the surface, as each time they are told, it is like telling them for the first time all over again.

Conclusion

To conclude this sad, but very important topic, is to say that grief for those living with memory loss is still very real, and although it may / will be forgotten, families often feel relieved that they have told the person the news, but perhaps only tell them once.

For family members, please do remember that feelings can remain for longer than the memory, which is also the same for happy times, so keep on visiting your loved one and keep bringing them joy, because even if they do not remember the visit, they will be feeling good about it, even if you do not realise, for hours afterwards.

Thank you for taking the time to read my blog, The Care Whisperer, talking about care in a way that no one else is. If you would like to be made aware of future content, please hit the subscribe button and I’ll look forward to seeing you next time