I’m sure we’re all familiar with the idea of dementia as a journey – as the condition deteriorates and the person with it passes from the early, through the middle to the late stage. Each stage has its own challenges and the bottom line is –well, there is no bottom line. Stuff keeps on changing. And that, so people tell me, is the biggest challenge of all.
In the past couple of weeks, I have, as usual been talking to a lot of family carers in various groups and I have been reminded that you too are on a journey through these different stages. If you are on a journey you need a compass to help you find your way. It is also a whole lot easier if you don’t have to make the journey on your own. The reason our carers groups are called Encompass groups is because they provide a friendship group of people who will encompass you with their loving support and understanding- as well as providing a compass to help you to navigate the path and understand your experience.
At our current Support 4 Memory course, we have two people in the very earliest stage of dementia and some family members. The issues they are facing are different than those who have moved further on. One of the biggest challenges for everyone at this stage is to look around the corner of the road and see what may be ahead. This can be very frightening and it is not surprising that many of us prefer be ostriches. When this natural reluctance becomes Denial (in its’ technical sense) it often seems to affect the way the journey goes.
Over the years I have met so many people who have travelled this road. I have known people who have dealt with it in all sorts of different ways – some take themselves or their relative to the doctor because they feel something is wrong, And I have met others who deny absolutely that there is anything wrong at all, although it is clear to others who know them well that there is. Obviously, other things are going on at the same time – ill health, bereavement, moving hours. And it’s easy to explain away symptoms for those reasons. It is all a matter of degree. This is what makes the diagnosis of dementia so difficult. This Denial can last for years of course, making life extremely hard for all concerned. And the really serious consequence is that it prevents people from joining groups like those we run which can offer the cognitive stimulation and emotional support which is exactly what is going to help.
Anyway, as carers (or whatever you choose to call yourself), you may find that you are experiencing something called “Anticipatory Grief”. We usually think that grief is something that happens after a death. But it can start long before. As soon as we know that a death is on the horizon – and it may be a very distant horizon in the case of dementia – it is natural that we begin to grieve. Watching someone we love to deteriorate takes an emotional toll. And we should take notice of it. There are no rules about this. Some people find that that they have grieved for so long that when the person actually passes away, there is almost a sense of relief. Many studies have shown this to be true. But not everyone feels this relief. For many people, it seems to make no difference. We are all unique, just as all people with dementia are unique.
The road twists and turns
One of the hardest parts of the dementia journey to navigate is when the person changes from one stage to another. You may have gone on reasonably well together, after a diagnosis of dementia, still doing things you enjoy, leading a “good enough” life after making adjustments. And then the person with dementia deteriorates significantly and life is totally different. Suddenly the plan you had in place is no longer working, friction is building between you, significant changes must be made. And anticipatory grief can really kick in. We all need to accept that it is normal. Allow yourself to acknowledge that, although your person has not died, you are still grieving. You are allowed to feel like this. It’s real. It’s really important to connect with other people who are going through the same experience. Two wives who I know have a buddy system and a pact that that they can text each other at any time of the day or night when things are rough. If your person’s care needs become so great that you can no longer meet them yourself at home, the time has come for them to move into a care home. This doesn’t mean that your role as a carer has stopped, that you love them any less. But it means that the time has come for those care needs to be met somewhere else.
These feelings can be powerful and overwhelming at times so please do take advantage of the services of Sue and Lionel through our community. They are both trained bereavement counsellors and you can have that precious one to one time with someone who really knows their stuff. You will also be very welcome at one of our Encompass groups. Or indeed you can use both services. Many people do so. Details are on the weekly newsletter and you can just turn up or ring firstname.lastname@example.org if you want to discuss this further.
It can work out all right. You can, with support, complete this journey and emerge in one piece. I was talking to someone at the volunteers’ tea party on Saturday. (She knows who she is). Her mother had dementia and came to some of our groups. She herself attended an Encompass group and saw one of our counsellors. Her mother gradually became more and more frail and passed away about 18 months ago. My friend had a few months break and she has now offered her services to Tibbs Dementia as a volunteer on a regular basis. She said to me that she didn’t think she would have survived her experience of caring without our community and now she feels she is missing all the friends she made and really wants to give something back to help. She is by no means the only person whose journey has continued in this way. And our community is all the richer for people like her.