jmgoyder

Six months ago I was interviewed on ABC radio about Dementia and this morning the station rang me asking if I would have another chat by phone so of course I said yes. Two hours later the phone rang and I was on the air again with Geoff Hutchison.

He introduced me by saying something like “We are talking to Julie Goyder about living with and without Anthony” and I thought this was a wonderfully simple, and yet profound, way of describing the situation.

When someone you love is admitted into a nursing home, especially if she or he is your spouse, the mutual loss can be heart-breaking and often entails feelings of guilt, fear and uncertainty. The intensity of these emotions (for me, at least) lessens over time, then sometimes erupts into the kind of depressive episode that overwhelmed me recently. For some reason, the phrase “living with and without Anthony” really got to me because that’s exactly how it is – a sort of limbo.

Nevertheless, I no longer see the fact that Anthony is in a nursing home as a tragedy. After we both accepted that this was how it had to be, it has been wonderful to see how well-cared for he is (and certainly better-groomed than he was at home!) And, as I’ve said before, not having to care for him has reignited by ability to care about him. We can eat, drink and be merry as long as I don’t have to take him to the toilet ha!

In helping to facilitate a couple of carer support groups lately, one thing comes across loud and clear. The carers – both those who look after their loved ones at home and those whose loved ones are now in permanent care – are suffering. Some of these carers are elderly themselves so the physical, emotional and psychological toll on them is massive, especially if their loved one has Dementia.

The projected statistics and associated costs of Dementia are alarming; so too are the repercussions on that burgeoning group of people who care for family members with Dementia. In recent times, more attention has been given to these carers but there is no easy solution and many carers are reluctant to seek help anyway. Why? Because it is embarrassing to ask for help, embarrassing to admit you aren’t coping, embarrassing to be confused by your loved one’s behaviour etc. And then there’s the shame. I remember when we had to make a fairly quick decision to accept Anthony’s respite room in the nursing home permanently. Anthony’s Dementia was in its early stages then so he knew what was going on and he felt abandoned, but he still agreed. My sense of shame lasted two years.

I wish I could convince others that placing someone you love in a nursing home is NOT something to be ashamed about; that admitting that you are not coping is NOT embarrassing – it’s the truth; that succumbing to Depression is NOT unusual if you are caring for someone with Dementia. There are some desperate stories out there (one caller to the radio station outlined her own experience this morning).

Living with and without Anthony is just the way it is; it’s difficult but it’s do-able. And so many of us do it silently. I choose to share my thoughts rather loudly here on the blog because there is a Dementia crisis that needs attention.

After I tried, ungently, to reposition Anthony in his armchair the other day, this was our conversation:

Anthony: Have you ever heard of the word, ‘fear’?

Julie: What? Am I supposed to be in fear of you?

Anthony: I won’t enlarge on that.