The language of dementia is slowly changing

It happens too often. One day people will realise. Thanks Kate for your insight.

There has been, for many years, discussions, requests, even what could be seen as begging from may of us diagnosed with dementia to use respectful language. That means, respectful from our point of view, not those who are not diagnosed with dementia.

Of course, people with dementia do suffer some of the time, but we did before dementia too, but were not then termed as sufferers all the time. Some individuals with dementia may wish to refer to themselves as sufferers, and of course, that is totally their right, but I believe it is not ok to do so publicly, as it infers that we are all ok with that negative label.

The following is my guest blog published by Dementia Australia after attending the Alzheimer’s Disease International (ADI) Conference in Puerto Rico in 2014

I repeat: “Please don’t call us sufferers”

During the recent ADI2014 conference, it was apparent…

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Don’t give up

Thank you Kate – it’s reminded me to “not give up”.

Living Beyond Dementia™

jonathonLike my food blog, I’ve not been here for some time… The only suggestion I can think of this week, for living beyond dementia, is to not give up! A very close friend’s son died unexpectedly, a colleagues house burned to the ground, including their pets, and the week before that, a close girlfriends husband had a major stroke.

Dementia is definitely not the worst thing that can happen to you or someone you love, which I feel is worth remembering…

When you fall over, get up. When you fall off your bike, get backup, fix the bike, patch up your wounds, and get back on your bike.

When you feel sad, cry a while, then get back to living. When you lose someone you love, or someone you love loses someone they love, cry a while or a lot, then get back to living.

If you get dementia or someone…

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“So who am I now?”

A very very cruel disease for anyone who is affected by it, whether it be the person who has it, or their loved ones.


Dementia is cruel. It robs the individual of themselves, slowly, gradually. Their memories, their roles, their skills. Their ability to remember the name of the person or people closest to them. Their relationship to those people. Sometimes, they can become so distressed by this that they no longer feel safe with their loved ones, leading to them to display hostile behaviours in a bid to keep themselves safe – if there was a man you didn’t recognise in your bed, wouldn’t you want him out? Wouldn’t you hit out, shout, scream? Call the police?

As a health professional working with such situations, I have explained this many times to many families, in terms of the impact to the person with dementia. Having read other blogs by those caring for loved ones with dementia who no longer recognise them, I realise that we don’t often put emphasis on the family member…

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This entry was posted on August 7, 2016. 2 Comments

12 Helpful Hints

Some good information here.

Let's Talk about Dementia

Communicating with someone who has dementia


What can someone with dementia feel?

Imagine if you were to lose the ability to say the right word or understand what was being said, eg when on holiday in a foreign country where you don’t speak the language. You may feel frustrated, angry and look for help, perhaps to someone to interpret for you. You might respond by not speaking at all and withdrawing into yourself of avoiding situations where you have to communicate with people.

Here are 12 Helpful Hints for communicating with someone living with dementia.

  1. Be calm and patient.
  2. Face the person, speak clearly and slowly.
  3. Make sure that you have their attention by gently touching their arm and saying their name.
  4. Use short, simple sentences and say exactly what you mean.
  5. Try to get one idea across at a time.
  6. Allow plenty of time for the person to take…

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This entry was posted on May 20, 2016. 4 Comments

A Comparison of Photos

Your eyes stare into space
I try to search deep into your soul
To find the man I once knew
But he is not there.
The emptiness goes beyond compare
Where are you..?  I ask.
Where have you gone..?
Speak to me …
I love you still
I want you back

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Many of you will know that Steve is now in permanent care at a lovely facility called Linsell Lodge, which is run by the Salvation Army.  He has been there since 8th March this year; he was in respite from the beginning of February at another facility who unfortunately couldn’t take him on as a permanent resident.

I’m not entirely sure whether Steve has settled yet – he is calmer than he was, as he was showing aggression towards some of the staff, and consequently he had to be medicated, which was upsetting to see him so sleepy all the time.

These photos below show what this horrible disease is doing to my beloved husband, and Pamsie and Andrew’s adored dad.

Taken at Grange Jetty – August 2015

Taken at Grange Jetty – August 2015

These photos were taken in November 2015

These photos were taken in November 2015

These photos were taken in November 2015

These photos were taken in November 2015

A now-treasured photo as it was taken at the last dance we went to together – the New Year’s Eve Ball 2015/16 (he struggled a lot with the steps that night)

A now-treasured photo as it was taken at the last dance we went to together – the New Year’s Eve Ball 2015/16 (he struggled a lot with the steps that night)

While he was at Pennwood - 8 Feb – yes, his beard was shaved off!

While he was at Pennwood –
8 Feb – yes, his beard was shaved off!

During the first week at Linsell Lodge – 15 March

During the first week at Linsell Lodge – 15 March

Looking good on 27 March in the garden at Linsell Lodge

Looking good on 27 March in the garden at Linsell Lodge

With his daughter Pamsie – they managed to get a smile out of him – on 8 April

With his daughter Pamsie – they managed to get a smile out of him – on 8 April

With his son Andrew – they managed to get a smile out of him – on 8 April

With his son Andrew – they managed to get a smile out of him – on 8 April

These two photos were taken a few days after his kids saw him – 11 April – he was really sleepy – as you can see

These two photos were taken a few days after his kids saw him – 11 April – he was really sleepy – as you can see

These two photos were taken a few days after his kids saw him – 11 April – he was really sleepy – as you can see

These two photos were taken a few days after his kids saw him – 11 April – he was really sleepy – as you can see

Looking much better and more “with it” in his “new” second hand $10 recliner, which his son found! - 13 April

Looking much better and more “with it” in his “new” second hand $10 recliner, which his son found! – 13 April

Looking much better and more “with it” in his “new” second hand $10 recliner, which his son found! - 13 April

Looking much better and more “with it” in his “new” second hand $10 recliner, which his son found! – 13 April

Asleep in the chair – 22 April

Asleep in the chair –
22 April

Taken on Anzac Day – 25 April

Taken on Anzac Day – 25 April

Taken on Anzac Day – 25 April

Taken on Anzac Day – 25 April

It has been a matter of months – eight to be precise – to see him change so drastically.  It has completely ravaged him.   It is devastating and heart-breaking to watch this fit, healthy, vibrant, fun-loving, cheeky man develop into a shell of his former self.  I struggle with the daily difference, as do Pamsie and Andrew.

You will notice that he has lost quite a bit of weight – he used to weigh 73 kg about 18 months ago.  He currently weights around 66.5 kg.  I hope he doesn’t lose too much more.  This could be due to his medication, the fact that he’s not eating as much as he used to or that he’s getting up in the middle of the meals and leaving the dining room, or just a general decline.  The dietician will be monitoring this and trying other foods and protein drinks – it’s a case of try it to see if he likes it.

He is declining far faster than we thought he would.  Life is just so not fair sometimes.


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Introducing my book

Slide4I have made a voice recording to introduce my book for it’s release today, and have added the file and the notes here.

Hi this is Kate Swaffer from Adelaide in Australia here, speaking to you on the day my first dementia book comes out. Although I’ve not yet seen a physical copy of it, I obviously know what’s in it, although it was written over a year ago, so perhaps I may even have changed my mind on some things! You might wonder why someone with dementia would even want to write a book, for the most part, our experience and stories have been told by people with out dementia, and so it felt important to speak up. That is also part of the reason I started blogging almost every day over four years ago.

Being diagnosed with dementia at the ripe old age of 49 was more of…

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The Hardest Decision

quotivee_1024x768_0012_What-seems-like-the-right-thing-to-do-could-also-be-the-hardest               I have had a few hard decisions to make in my lifetime so far.  The first one was deciding whether to turn off life support for my fiancée back in 1987.  None of us knew what had caused him to collapse and end up in a coma, with no signs of life.  His family and I chose to do the kindest thing – let him go.  We later discovered that he had had a brain haemorrhage.  He was 24.  So I’ve grieved in the true sense, rather than in a complicated sense like I am doing now.

The second decision was not quite so hard – deciding to apply to come and live in Australia.  I was persuaded by my mum and it was a successful decision that I have not ever regretted.  I arrived here in 1991, in my mid-20s, with my whole life ahead of me.  I had the support of my aunt and uncle, and their kids (my cousins) and I loved it.  Once I found myself somewhere to live and a job to do, I was happy.  I met Steve in 1993 and we haven’t looked back since.

Now I’ve made another hard decision, which I think has been the hardest decision so far.  It is time to place Steve into permanent full time care.  I have agonised over this decision for a few months, but my tipping point has always been when he reaches the stage of incontinence.  While I do not intend to embarrass him (or our family), he is not quite there yet, although there have been a couple of mishaps.  Pamsie said to me a few months ago that probably by Christmas we would be looking for a Facility for him.  I wasn’t so sure then, but now I am.

So I have been looking at a few places.  One of them(Pennwood Village) has been recommended to us by three different people who have had family members in there throughout the last few years, most recently only a month ago.  Recommendations are always good to have, as you have no idea what a place is like otherwise.  You can go on the “feeling” of the place, how you are treated as you walk through the door to be shown around, how friendly the staff appear to be, but you never truly know until the day arrives when you take your loved one to live there.  Pennwood Village is two minutes drive from our house, and halfway between our home and Pamsie’s home, so location-wise it is perfect.  I initially went to see it two weeks ago, a few days after I had made my decision, so I was somewhat emotional (and I still have my moments!).  The Village (as I’ll call it) is a Serbian Community but caters for other nationalities as well.  I met with Dubravka, the Site Manager.  She has a strong European accent but I could understand her clearly.  She suggested that we start off by putting Steve into respite for a month, see how he settles in and then go from there, with the possibility being that the respite turns into permanency.  I was surprised at the length of time, but she assured me it’s best for Steve as it would settle him more easily than a few nights here and a few nights there.  Fair enough.  She didn’t have time to show me around on that occasion, but suggested that I take Steve there for lunch the following week.  I left, saying I would be touch.  When I arrived home I phoned Pamsie to let her know what I had done and I’m thankful that she was supportive.  We were on the phone for 30 minutes, discussing it all.  About an hour later, Dubravka called me to say she had a month’s respite available and someone had cancelled – would I like to take up the room for Steve?  He would need to go in that night.  OMG!  I wasn’t expecting something so soon, but was grateful that she called me.  I asked how long could she hold the room for as I couldn’t make a decision immediately and needed to discuss it with the family.  She would hold it until the following day.  I immediately phoned Pamsie back.  After a short discussion, I persuaded her to phone Dubravka to get a bit more information out of her.  A few minutes later she called me back.  After some tears and discussions, we decided to decline this offer as we are not quite ready (emotionally, and physically) and we really want him to spend his last Christmas at home while still living at home, but with the promise that the next time (perhaps in January or February) we will be ready.

I took Steve to lunch there on Wednesday.  Surprisingly he didn’t question me at all as to why we were there, and what the facility is for.  Obviously there were some residents around, although most were in their rooms as it was a stinking hot day.  Dubravka showed us both around the facility – it’s really nice.  It’s set up with Houses (about six or seven) which are separate from each other, but connected by covered outside walkways with gardens either side of the walkway.  Each House has about ten large, airy rooms, a dining area and kitchen.  The facility is secure without being like a prison.  Residents can wander around the gardens and the whole facility, but they cannot leave the grounds unless someone is with them as exiting requires a code.  The majority of the staff are European (probably Serbian, Yugoslav, etc) but they all seemed pleasant enough.  Then it was time for lunch.  We ate with the staff, who eat the same food as the residents, which is good (it means that the staff’s meals are no better or worse than the residents’ meals).  Sitting with us was a guy who was originally from Poland.  I asked him to speak with Steve in Polish and Steve responded fairly well, but because he was put on the spot, he became a bit lost.   The guy said he spoke well.  So if he does more in there, at least there will be someone who could converse with him if he reverts back to one of his native languages, although we would obviously like to discourage that, as we wouldn’t be able to talk with him!  We were there for just over an hour.  When we left, Dubravka gave me a hug and said she’d need to discuss some more things privately with me at some stage in the New Year, then shook Steve’s hand and he leant in and gave her a kiss!  He didn’t ask any questions at all when we arrived home, which surprised me, and I didn’t offer any more information to him.  I’m sure he knew it was an Aged Care Facility.

I have since seen two other facilities – one I didn’t like as soon as I walked in the door.  It had “the smell” of disinfectant.  I realise that it means that it’s clean, but I can’t stand the smell.  I was shown around the older (cheaper) area which was at the back of the facility and was like a rabbit warren.  The rooms were small and poky.  The newer (more expensive) area wasn’t too bad, with the rooms being slightly larger and more airy.  But I’d already made up my mind – this was not the place for Steve.  It also doesn’t have a secure area, as the Village does have a “Memory Support Unit” which is additionally secure.  The other place wasn’t too bad – similar set up to the Village, but without the gardens.  The Villa’s (as they call them) are connected by corridors.  Not quite so secure as the Village, but there is a secure “Memory Support Unit” which is completely locked down.

So now we wait until the New Year and hope that something comes up. images

In the meantime, he has been enjoying his Tuesday’s at Seasiders – the Day Respite Centre.  He will start to go there on a Friday as well next year.

Since mid-October I have been accessing some additional services to ensure that Steve is not left on his own, particularly when I am at work.  Pamsie got in touch with Home Instead Senior Care, which is a private company providing qualified, police checked CAREGiver’s to spend time with people in their own homes.  Pamsie, Andrew and I met a lady (Lee) who came out to us one Saturday to discuss our needs.  She advised us of the cost and we let her know Steve’s interests.  She arranged for Mike to meet Steve the following week.  So we organised for Mike to spend 5 hours from 10am each Friday with Steve, while I worked.  It still meant that Steve would be on his own from about 8.30am until 10am, and then from 3pm to about 4.45pm, but at least he was occupied during the main part of the day.  While Steve was reluctant about it happening, we have since heard that he actually does enjoy his time with Mike, despite complaining to me about each visit!  While it is a costly exercise, it is also a necessity.

His ACAT approved him for a Level 3-4 Home Care Package, which are as rare as hen’s teeth, but we have managed to secure a Level 2 Home Care Package with Resthaven.  Unfortunately it doesn’t allow us many hours per week – in fact we have someone for 4 hours each Thursday morning – but we may be able to add a couple of things in time, depending how much money is left in the bucket.  I am surprised at the cost but there is nothing we can do about it unfortunately.  The HCP started in mid-November.  We secured a lady called Julia who cleans our house for us on those Thursday mornings.  She is obviously a qualified carer as well, so keeps an eye on Steve, feeds and waters him before she leaves.  Friends come up in the afternoon to spend the afternoon with him which he also enjoys.

Other than that, he is with me, or I am with him – whichever way you want to look at it!  It is difficult to keep him occupied, particularly when the weather is so hot (like it is at the moment – we are currently experiencing a lengthy heatwave, which is highly unusual for December – we have had three days, so far, of over 40 degrees celcius, and still have two more days to go, before it cools down to the mid-high 20s – it’s not something we relish!!).

In mid-November, we both stayed at an overnight respite centre, called Norman House, for one night.  NH is set up like a normal family home – four bedrooms, two bathrooms (one set up with disabled facilities), kitchen, lounge and dining area, and a lovely garden.  It is secure, with access and exit being through a locked gate.  Again, Steve was reluctant at going there but soon started to enjoy himself.  Spouses/carers are allowed to stay as well, hence why I was there too.  It is staffed by qualified carers/nursing staff 24 hours a day.  NH can accommodate up to 7 people, but usually they have about 4 as each person is in a separate room.  We had a nice dinner and then retired relatively early to our room.  The following morning, I told Steve that he was staying there all day as I had to work.  Again, he was annoyed, but when I collected him he told me he had enjoyed the day, but didn’t know exactly what he did all day.  So I’m glad he seemed happy.  I booked him in for a night on his own, which he went to this week.  I didn’t tell him before we left home as I wasn’t sure of his reaction.  When we arrived, he knew what and where the place was, and asked me why didn’t I tell him.  He also said to me – which blew me away – that he likes coming here!!!  So I felt very relieved that he appeared comfortable and happy about the situation.  I left him in the arms of a very sprightly 90-year old lady called Marjorie who enjoys dancing!!  Guess what they may have done that night?  I went home, as I was due out for dinner with friends.  They collected me at 6.30pm and we went to a lovely Vietnamese restaurant in Prospect.  As I wasn’t driving I was able to have a couple of glasses of wine.  When I collected Steve the following afternoon, he was still dancing with Marjorie!!!  No, apparently they hadn’t danced the night before but they had still had some fun together, which is all I care about.  He was relaxed and happy.  When he goes for his next visit, he will be staying for a whole weekend (Friday through to Sunday) in early January, and I think he will have a ball.

So things are moving along here, albeit in a downward way for him, but at the same time, it will be a positive for him.  I think he will flourish in a more structured environment, rather than wandering around like a lost soul at home not knowing what to do with himself.

Our Christmas will be a slightly bittersweet one for us this year, knowing what we know will happen in the New Year.  However, we have to make it as enjoyable as we can, smiling through our tears, so that Steve doesn’t pick up on our sadness.


I would like to wish all my followers a very Merry Christmas, and good health, wealth and happiness for the coming year of 2016.


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Thank you for following my blog this year.  See you in 2016.

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