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.
jmgoyder 
I am grateful for you and your beautiful voice, with or without Anthony. ❤
Welcome back my friend. great piece of insight, so glad you are back writing, yes you have your issues, as does Ming, but it is so common these days so you are not alone and have heaps of support for you, Ants, and Ming from so many people who also love you and will support you big time. You are one very special lady, always with a smile on your face while your heart is breaking.But always remember it is OK to feel down and want to cry, be scared, be grumpy, not eat right, or eat to much, so many symptoms for depression, that many of us have to deal with. But guess what ? Its ok to feel like that as many of us do. Stay as strong as you can be, be kind to your self, give your self a treat, just because you can. Sorry about the ramble. xx
Sharing your experience as you do MUST be helpful to others, you are so brave to speak out.
I have just listened to the broadcast and your upbeat responses to the very good questions you were asked, were refreshing and so positive. The broadcast did seem to want to emphasise that dementia sufferers ought to be kept at home concerns me though. As you said, most carers are aged themselves, and it doesn’t seem fair that they are being asked more and more, to keep their loved ones at home. What do you think?
Yes one of the listeners called in and you can hear her opinion if you keep playing it after my interview xxx
Please keep blogging! It helps!!!!
How cool that ABC found you!!! That is huge.
My mom used to freak me out by saying that she would NEVER go into a nursing home. That’s a huge amount of care and stress for someone. When my dad’s heart failed and he got dementia, my mom put him in a nursing home. It was just like you said. They make them comfortable and take great care of them in their last stage of life. The one my dad stayed in hosted an art show for him. The only one in the last fifty years! It was a fantastic experience.
Your exchanges are as beautiful as the both of you ❤
I think you both find living without each other very sad. You have such a beautiful love story with him. This is a sad ending, but you have found a way to find insight from it. Your writing helps so many others, too.
i do think the host put it perfectly. thank you for all you do to raise understanding and awareness, even as you are immersed in it yourself.
It is a shame that financial considerations come into play along with the emotional ones. Our government has just floated the idea that everyone should be looking after their own ageing parents instead of bothering other people. They should try shifting an immobile old person.
I hope you get the opportunity to be on many more radio (and perhaps TV) programs, Julie. You’re one of those rare people who can articulate your feelings about this difficult subject.
I know so many, (including my own family) who have great difficulty in sharing their innermost fears and thoughts. Luckily my 90 year old Father and I are able to share much since my Mother passed away 5 years ago. I’ve always been (some would call brutally) honest. There are so many subjects that are still taboo and its important that people are able to release their emotions and not bottle them up.
I salute you as a person of great integrity and admire your candour and pragmatism. But I do remember how hard it was for you to open up on this blog many years ago.