Over the past few years I have watched a lovely, independent, livewire neighbour become a shadow of herself. As the light of independence and curiosity has diminished it has been hard to watch her decline into dementia.

I have seen this before. I worked for many years as a Registered Nurse in aged care. I watched what someone once described as death in slow motion as the once vibrant people I cared for became less and less themselves.

Dementia doesn’t change who a person is, it leaves a void where the person, their personality, once was. Slowly the person becomes less and less until there is just the shell of their body.

I have also watched family members on this journey, as they struggle to come to terms with the slow destruction of everything they are.

This is a different kind of grief. It is known as anticipatory grief. This is mourning the expected loss. The person you love is still alive but you know they are dying and you watch them die a little each time you see them.

People losing a loved one to physical illness, such as cancer, also suffer anticipatory grief.

What Is Anticipatory Grief?

Anticipatory Grief is grieving in expectation of a loss. The person you love is still alive, but you know they are dying. Suddenly the future is different. You can see them there, but how much future do you have before they are not there?

Dementia has that extra knife twist as the person you love loses what makes them who they are: their memories and personality. Their bodies may still function well, but their mind does not.

I saw this with my grandfather and father. As they slipped away from who they were into someone who was almost childlike in their dependence.

The twist in the case of dementia is that they still look like them, but they do not act or sound like the person they once more.

It is so hard to continue to see this person fade away from who they once were into a recognisable figure that no longer is the person you knew and loved.

Finding “Closure” Amongst Dementia

When someone you love is dying of an illness, they are usually in a position to have conversations with you. This allows you to have discussions about the past, about your relationship, about your future. When someone gets dementia this opportunity is rarely available. By the time dementia is suspected and then confirmed, it is too late to have those discussions.

To add to this lack of closure your loved one changes from the vital, amazing person they were into someone who will eventually not recognise you. They will often lash out in anger and agitation as well. That is hard to watch.

It is hard to watch this vital, independent person need help with simple activities such as washing and dressing.

The Long Road To End Of Life With Dementia

The anticipatory grief of physical illness usually doesn’t last long.

Dementia sufferers can take years to die. This means you will lose the person they are but not the physical body. Your memories of what they were like are invaded by the new memories of this unfamiliar person. One who is frequently agitated, anxious, combative, aggressive and doesn’t know you.

Caring for the Carer

If you are caring for a loved one with dementia your life becomes increasingly restricted and stressful.

As your loved one deteriorates, so the caregiving you must give increases.

They may wander so suddenly you can’t leave them alone.

Your stress levels rise as you can’t focus on work, or sleep, because of your need to watch this person who looks like your loved one but is increasingly ceasing to be.

It is essential you get help, both physical help in the form of someone to care for them to give you a break, and emotional support to cope with the changing nature of the relationship, the grief around that, and the anticipatory grief of their end.

During this time caring for yourself may involve seeking counselling so that you have someone to talk to without judgement. Someone to help you carry that burden for a little while.

Having To Make The Hard Decisions

At some stage in the dementia deterioration, a decision may need to be made to put your loved one into aged care.

This is such a difficult decision.

There is the expectation that you care for them. This comes from your own expectations and the expectations of others. Some people may support you with your need to put them into care. Others may tell you that you should continue to care for them.

There is a lot of guilt associated with putting your loved one into care.

Again, counselling is helpful to allow you to explore options and your feelings around them. Armed with that support, you can better make a decision about your loved one’s care.

This Is A Hard Road To Travel

Watching someone you love cease to be the person they once were.

Watching that person deteriorate and become someone else.

Then watching that person cease to be anyone at all.

These are the part of the road you have to travel.

If you add to that the stress of watching this happen, of caring for them, of making the hard decisions about their care, then you will be experiencing a lot of grief and stress.

Don’t be afraid to reach out for help.

Can I Help?

If you would like to talk to me about how I can help you with your anticipatory grief, please contact me on 0409396608 or nan@plentifullifecounselling.com.au

If you would like to learn more, I write a regular newsletter with helpful information, tips, information on courses, and the occasional freebie. At the moment I have a free mindfulness meditation for anyone who signs up to my newsletter. This meditation offers a way to safely explore your feelings and learn to be okay with them. If you would like to subscribe please click on the link here: http://eepurl.com/g8Jpiz