wings and things

Dementia’s grief

Despite the fact that I am plodding rather clumsily through my grief about Anthony’s death, I still retain a fascination with Dementia and its impact on those who have it. So, yeah, it isn’t just about me and my own grief; of course not!

It has only just struck me now that Anthony’s increasing confusion over the last several years was exacerbated by his grief about this confusion. He never seemed to know he was confused because the dementia was so gradual and, again, I think this was a blessing. However, there were times when he did understand that something was wrong.  I always reassured him of course but every now and then he would give me ‘the look’ as if to say, “do you think I am stupid, Jules?”

The love, longing and anxiety I have felt for so many years now was probably exactly the same for Ants but he had forgotten how to express it. He was as lonely for me as I was for him; after all, we had known and loved each other for 40 years.

My point here is that people with dementia are not just ‘people with dementia’. In other words, there is a whole swirling, twirling world of emotions and experiences that preceded the dreaded diagnosis.

Anthony’s grief on entry to the nursing home was palpable and it nearly destroyed us emotionally, but we did get through this heart-breaking decision all those years ago. Ming barely remembers as it was the same week he had his first surgery for scoliosis.

But Anthony put Ming’s health first and I will always be grateful for how he knowingly sacrificed his own emotional well-being for the sake of Ming. Despite being in the early stages of Dementia, Ants did know that respite in the nursing home might evolve into permanent care, which is exactly what happened.

I can hardly bear to think about how grief-stricken Anthony must have been at the time, despite his dementia-induced confusion.

And I think it is worth re-emphasising here that people with dementia also suffer grief.


Ming’s honesty

One of Ming’s friends asked him the other day if he were relieved that Anthony had died. Ming was taken aback and slightly affronted at the question, but eventually said yes.

After admitting this relief, he went on to say to his friend that it was as if a black cloud had lifted.

When Ming told me this today, I responded by saying that this was okay but my own feelings were different and that Anthony’s existence in the nursing home was never a black cloud for me despite the many cloudy days, weeks, months and years of illness. If Anthony had lived beyond the pneumonia that killed him, he would soon be entering his sixth year at the nursing home. He was already pretty much bed-ridden but to add suffering to the situation would have definitely been a black cloud for me too; I would have had great difficulty coping with Anthony suffering.

That’s why I am so grateful that Anthony died when he died. The quickness of his death still shocks me but I am gradually recovering from that shock I guess. It will take much longer, of course, to process the grief I feel (my own black cloud?)

In the meantime, I am fortunate to have such great support from family and friends. I’m very grateful for messages I’ve been remiss in replying to.

Ming’s honesty is sometimes ruthless but it is so refreshing that he isn’t nervous to say what he really thinks and feels. I didn’t know that Anthony’s nursing home existence had become a black cloud for Ming and I don’t know why I didn’t know that.



Resurrecting the place that was Anthony’s

Using the past tense about anything to do with Anthony, and this home, is still very strange for me, even though it had become impossible to bring him home for a few years.

During the week that Anthony died, the electricity went AWOL and we had to have the whole place rewired by electricians who were amazed that Ming and I hadn’t already been electrocuted by 100-year-old wiring to the house and shed. The wiring in the roof and walls was so ancient that it was, apparently, incredible that the whole place didn’t catch on fire.

Black humour alert: Ming and I might have died in a fire, or by electrocution, during the same week that Anthony died.

Okay, so obviously that didn’t happen as Ming and I are still here, thankfully. But the electrical situation did make me wonder. Did our previous (now retired) electrician warn Anthony and did Anthony (with encroaching dementia), just forget about this danger? Or did Anthony, being frugal, decide to ignore the possible warnings in order to save money?

I will never know the answers to these questions but I do know that Anthony would never, knowingly, have put Ming and me in any sort of danger.

In the days before and after Anthony died, Ming and I had to arrange for the house and sheds to be re-wired, mainly because we had no electricity. Simultaneously, our ancient electric stove finally died, and then our washing machine, both of which we did without until I had a bit of a meltdown and now we have a new stove and washing machine.

If Anthony were still alive I would have had a heated argument with him about him being such a tight-arse about money, and saving, and spending. Ten years ago, I would have berated him, he would apologise, and then we would make up with little Ming catapulting himself onto Anthony’s lap and then mine, like some sort of bouncy Pokémon.

Do I have a bit of residual resentment even though my beautiful husband is now dead? Yes, I do. He could have done all of it better; he wasn’t perfect; he had this strange loyalty to people, including family, some of whom treated him badly; he was nervous; he was a 57-year-old newlywed married to a woman 23-years younger – me.

Anthony was never the perfect husband, just as I was never the perfect wife, but we both determined to get through all of the many hurdles and survive. We were absolutely dedicated to each other and to our son, Ming, and that is why, in the wake of Anthony’s death, this place will be resurrected.



Dreaming about death

Ever since Anthony died, 8.5 weeks ago, I have had dreadful dreams, nightmares really. I’m sure this is normal when someone who has been dying very slowly, over many years, from many diseases, actually does die.

It was so fast! Even in retrospect, the suddenness of Anthony’s death still shocks me. How did I not see this coming after years, months, weeks, days, hours, then minutes? I was prepared to stay at the nursing home, sleeping in the armchair next to his bed; I even had my pyjamas with me. I thought it would be a few days but I wasn’t sure.

The first dream was terrible – a nightmare really – Ants was in the hospital and they were cutting him open to find a reason. Thankfully, this nightmare hasn’t recurred.

But there is a persistent dream that repeats itself over and over in which I go to the nursing home to visit Anthony and am told that he died. So I visit the person who is in Anthony’s room but that person is never there and the room is always empty. So I sit, waiting, in that room, until the staff force me to leave. They are gentle but firm with me and I am told not to come back.

I wish I could stop/prevent having both of these dreams but it just happens! Visiting the various people (residents and staff) at the nursing home has become impossible for the time being because I am just not strong enough.

This grief has the solidity of mud and fairy-floss – gentle, violent, an impossible paradox. With all my heart, I just wish I could have had a few more days with this beautiful man.







Hard work

It is hard to work through the grief of losing a loved one. In and of itself, this is difficult and it becomes quite confronting sometimes, to say the words, “He died.”

As a volunteer for Alzheimer’s WA, I was asked to give a talk at a ‘caring for the carer’ morning tea on Monday. I took Ming and Meg with me and Ming and I presented together. Nobody knew us, so nobody knew that Anthony had died so, as I began to speak, I also began to cry as I said those words, “my husband died recently.” Ming took over as I tried to control my tears and I recovered quickly. Then we delivered our talk.

Today, as a volunteer for Red Cross, I attended a luncheon for carers and, again, Ming accompanied me. It was a lovely experience but, once again, I was asked a few times about my own situation and had to admit that my husband had died recently.

Every time I say those words I am so glad for the massive sunglasses I wear because they disguise the tears to some extent. Of course there is nothing wrong with tears but it’s still embarrassing.

Then, last week, I was interviewed on our local ABC radio station, about Anthony’s dementia and his death. Ming didn’t accompany me as he was working (he works at a restaurant), so I did it on my own and I spoke calmly and didn’t cry.

I feel very strongly about dementia care and am passionate about the importance of listening to people with dementia, and about going with the flow of their conversations, no matter how muddled. Anthony’s conversations with me, with Ming, and with Meg and others were meaningful even if they didn’t make sense in the usual way. These dementia dialogues were important, valuable, and full of love and humour – worthwhile!

The hard work now is to convince people of this, to convince people that the person with dementia isn’t dead and gone, to convince people to keep visiting that person even is she or he is in a nursing home and appears to be unresponsive.

The importance of this kind of hard work can’t be measured because it is too beautiful.


Anthony antics

Apart from tossing my hand aside occasionally, Anthony would often come out with the most extraordinarily apt one-liners.

I found some of my scribbled renditions of these today when Meg (my mother) helped me sort through a few boxes of mixed up paperwork – everything from tax receipts to sympathy cards to my scribbles. One of the jobs I had been avoiding was to ring the ambulance people to get a refund on the ambulance ride to the hospital from the nursing home, and the ride back. The ambulance woman on the other end of the phone promised a refund after establishing that Ants had died. Her voice softened and she offered her condolences. This made me cry, of course and, if Meg hadn’t been here, I would have given up on the rest of the paperwork.

Anyway, in amongst my scribbled notes, I found a gem:

Me: Are you okay, Ants?

Anthony: I’ve been having an argument with my ego, Jules.





An ‘aha’ moment

Since Anthony died, I have, of course, experienced all of the stuff I’ve already described – the emotions, confusion and shock. But, over the last week or so, I’ve also been bothered terribly by my struggle to figure the grief out. For example, I couldn’t understand why, when I was feeling more at peace, all of a sudden it felt horrible again, really horrible.

Why did the bouts of sad, wretched sobbing keep coming back when I had already accepted that Anthony was dead?

I suddenly remembered the 23rd Psalm and that line “even thought I walk through the valley of the shadow of death” got to me. To be in a valley, and also under a shadow, is like being in some sort of dark, inescapable horror movie scenario where there is no escape. But the psalm does continue to say that “I am with you” and that is comforting.

And then it hit me: I haven’t just lost my beautiful husband, I have also lost my identity as his wife, i.e. my wifedom is gone. Yes, of course I am still a mother, daughter, sister, cousin, auntie, friend, but I am no longer a wife. And, over the last several years of Anthony’s illnesses, this wifedom had become an absolute priority – a purpose even.

It has come as a bit of a relief to have figured out why the grief over the death of a loved one is so ferocious, unpredictable and relentless. Not only have you lost that loved one to death, you have also lost your identity as his/her someone. So in a way, you lose some of your own self.

A sense of identity is one of the most vital human needs so when you lose a big chunk of it (as millions of us have, of course), the job of grieving becomes terribly complicated and difficult. Recovery seems impossible at times. Outside you there is this gap that the person you loved left, and inside you there is this gap that used to be the ‘you’ who loved him/her.

Understanding this helps me to accept that this is a brand new situation, a new experience, a new way of living. I can either look at it as an adventure and become curious, or I can deliberately refuse the notion of new. I choose the former and am even getting a bit excited about it.

I think Anthony would approve.



Humour and grief

Humour and grief are an odd match but sometimes they do collide unexpectedly. For example, just moments ago, I googled “how to fast-track grief” and, after discovering that this was pretty much impossible, I belly-laughed at my idiocy. I also read a useful article:

After all of these years of Anthony being so ill, as well as the last several years of him being in a nursing home, you would think that I would have a handle on how to ‘do’ grief but I don’t have a clue! I might have a sense of peace on Monday, be in a state of sobbing despair on Tuesday, sharing funny anecdotes on Wednesday, feeling blank on Thursday, totally confused on Friday, determined to get my act together on Saturday, unable to get out of bed on Sunday and then there is the inevitable Monday again and again and again.

Well, tomorrow is another Monday, the seventh Monday since Anthony died, and the anniversary of the first night I ever stayed at the nursing home on the armchair beside his bed. It is still such a shock to me that he died so quickly because many people with aspirational pneumonia either recover, or linger on for weeks.

Over the years, there have been many times when I couldn’t rouse Anthony (TIAs or just sleepy), so I had become a bit complacent because he would always come back. On that last Monday, I even shoved him a bit and joked, “Are you dead or alive?” This was typical of our banter and of course I had no inkling that 48 hours later he would actually be dead so it’s a strange memory now. This is very sad for me because Anthony always came back so I guess I just assumed he would live for many more years and that I would write my book about him in his nursing home room.

Anthony was the funniest person I have ever met, with Ming coming a close second. The fact that Ants, Ming and I were able to share humour over the last few weeks before he died (Ants thinking Ming was the hair-dresser, and proposing to me all over again because he thought we weren’t ‘officially’ married) makes all of the moments of all of the last years worth it.

It is heartbreaking to continue to love someone as much as I love Anthony, even after he died, because that present-tense love is such a mismatch with the reality of death where everything is in the past-tense. I keep wanting to go to the nursing home to tell him about my latest philosophical findings (a habit that always caused a cynical bemusement on his part, and, usually, one of his slow smiles). But I can’t go and see him anymore because he’s not there. I keep having vivid dreams that I have somehow infiltrated the nursing home so am always in his room with the various people who will also live their last years/moments there. And, even when I am awake, all I want to do is to go back to that nursing home room; it is a dreadful longing and probably the worst part of my young grief.

The best memories are, I think, the funny ones. The sad, despairing memories are always there of course but, up until the Sunday before Anthony’s death a few days later, we were all still smiling.

How did Anthony cope with it all? How did he cope with going into a nursing home? It must have been an unbearable blow to his pride, his ego, his sense of himself as a strong man. How did he deal with the idea that he would no longer be the master of his own home, his own farm? How did he accept that he wouldn’t be living with us anymore – with Ming and me? And how the hell did I cope?

Mostly, we dealt with all of this with his/our amazing humour and an incredible ability to accept what is. Anthony knew he had prostate cancer and Parkinson’s disease but he didn’t ever know he had dementia because I never told him. What would have been the point of worrying him further? The dementia aspect of his Parkinson’s disease was so gradual, and sort of sneakily incremental, that Anthony never, ever, knew he had it!

Anthony: Let’s get married, Jules!

How wonderful, strange and funny that he would have proposed to me again just weeks before he died.







A sense of peace

Today, for the first time in the six weeks since Anthony died, I experienced a sense of peace and, now that it has lasted several hours, I trust this sense.

I did a radio interview this morning with Stan Shaw

It was a bit nerve-wracking to do this interview because my grief is still so raw but I’m very glad to have spoken about Anthony’s dementia and his death. I was terrified that I might cry during the interview but I didn’t and it was a pre-recording anyway, not live. My mouth kept getting dry and water-slurping probably doesn’t sound so good on radio. Stan assured me this would be edited out, and gave me a hug as I left the studio. What a lovely man. Thanks, Stan.

I have graduated from the weird adrenaline rush of the initial grief and shock, to the dull thud of unbearable sorrow, to today’s sense of peace but I realise that these stages of grief are not linear. I might have to re-live them over and over. If only there were a fast-track to overcoming grief, but there isn’t.

For a man of 81 who survived kidney cancer, prostate cancer and Parkinson’s disease dementia, for over a decade, most people would think that death would be a relief for him, for me, for Ming, for all of us. No! On the Friday before his death on the following Wednesday, he was fine. Yes, he was bedridden but he wasn’t in physical pain and he always had a fantastically intuitive grasp of his own mental health and would often say to me “I’m nearly better now, Jules.”

And I would always reply with a ‘yes’.

I want that Friday before he died back; I want to re-visit the days before I didn’t know he was going to actually die; I want his big, warm hand in mine; I want him back, just for one more moment. It is said that grief is a form of love that doesn’t know where to go and I really get that now.

It is lovely to be experiencing a new sense of peace today.