A Strange Note…Some Bizarre (but meaningful) Words….Will This Mystery Ever Be Solved?

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I was rustling through my old jeans pocket recently and pulled out a wad of receipts and notes. I was checking them before throwing in the bin when I came across this most bizarre note . I am sharing this note as I am hoping someone in the ‘DD’ group who may have cared for my Dad in hospital or the Nursing Home may know something about this.

THE BASIC FACTS:

The letter is not in my Dad’s handwriting.
I have never seen that notepaper before
I have no re-collection of someone handing me the note

THE BIZARRE FACTS:

The sports listed are 100% correct
My name is mentioned twice
My age at the time was 100% correct.
I have a brother in Sydney as stated (but he couldn’t remember his name, but got the age correct)
Whilst many people know that I played footy in the hallways of the hospital and nursing home, only Dad would know they were drop kicks.
His brother’s name is David (Dad used to get names mixed up)
How did this note end up in my pocket?
It must be at least 6 months to a year or more old as Dad was not able to speak much

THE CONSPIRACY THEORY:

I am guessing that a carer or possibly a nurse (or maybe a distant friend) that doesn’t know Dad that well has written down a note dictated by him. i think this because they have written ‘Love David’ which is incorrect and I would assume a regular carer/nurse would have corrected that to Bob.

WHY THIS NOTE IS AMAZING TO ME?:

This note gives an incredible insight into the mind of someone with dementia. You can see that he is trying to say he does not have dementia and wants to prove it by stating facts that he has all his marbles. By listing random facts he is trying to give evidence of how clear his mind is. It displays the confusion and shows how he doesn’t know what dementia is, but he believes he doesn’t have it regardless. The random thoughts mentioned are all about dementia and family and he is thankful and wants to let us know he loves us.

Whilst this post is a bit ‘deep’ and ‘spooky’ it is a complete mystery to me, I thought it was worth a shot posting to see if anyone knows about it, or secondly believe that it was a letter dictated by Dad. Irrespective, I felt it was an amazing note worthy of sharing and once again we learn something more about people with dementia.

Dating Someone Else When Your Partner Has Dementia…Is It Wrong?

Gail Lansbury gives her husband Bruce Lansbury a kiss during one of her four weekly visits to Caleo Bay Alzheimer's Care Center in La Quinta where Bruce now lives. Photo taken on Tuesday, February 2, 2016.

Dementia can last many years and for a considerable amount of those years the person with dementia often is not the same person they were previously. Does this situation change things for couples?

I am really interested to hear your thoughts on this topic and see what the general opinion is on the matter. I have seen first hand how the ‘couple dynamic’ changes when someone goes into a nursing home.

There are many different angles to discuss this topic from and am hoping we can have a mature and sensitive discussion about the costs and benefits of dating another person.

This very situation would be occurring all the time around Australia, hence I feel this is a really important topic that needs to be discussed and ‘Dementia Downunder’ is an ideal safe and respectable forum to do so/

Some discussion points are:

• What if the person with dementia gives a green light to go ahead?

• Should the person who is dating feel guilty if the person with dementia forgets everything about their partner?

• What are the benefits of seeking new friendships and relationships?

• Should we judge those that are lonely and seeking love and affection?

• When the person declines so much that they are a different person, is it now ok to look outside the relationship for companionship or intimacy?

*Please read the two articles below to gain insight and a balanced viewpoint on this topic and then feel free to comment below with any feedback or thoughts you may have.

http://www.nextavenue.org/should-you-have-affair-when-your…/

https://www.psychologytoday.com/blog/contemplating-divorce/201011/dating-someone-while-married-spouse-alzheimer-s-disease/

 

Emergency Department – ‘Code Blacks’

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I am in a very privileged position to meet with key people in the New Royal Adelaide Hospital (nRAH) in regard to discussing ‘code blacks’ and making practical changes to minimize the trauma to both patients and staff with escalating behaviours.

This is a golden opportunity to set a new standard in the ED of the hospital and have a different mindset in regard to people with dementia which can hopefully be adopted by hospitals around Australia.

I would like to represent the ‘DD Members’ that have an opinion or some feedback about the way things are currently done in the ED. I am really excited that the decision makers are listening and prepared to improve things – Please place your feedback, comments and ideas below so I can be fully prepared.

If you have experienced code blacks and the ED environment your participation in this discussion would be most appreciated.

Thank you

The Grieving Process – My Top 10 Learnings

Silhouette of male person against a colorful horizon.

Today I wanted to share some personal thoughts on how I have felt since my Dad passed away in Feb.

After the funeral I was totally humbled by the support from family and friends. I also felt really strong because of all of you in our ‘Dementia Downunder’ community.

I never dreamed I would be leaning on the support of hundreds of people (mostly whom I have never met) and sharing my thoughts so openly. I can only imagine if there is people out there alone, or with limited family caring for someone with dementia, that our community could really fill a void for them.

‘DD’ and the stories I told over the years gave me a real feeling of pride in my Dad, my Mum, my family and the legacy we have created.

When I walked back into Dad’s nursing home a few weeks later after he passed I still retained that passion to advocate, and instantly re-ignited the amazing connection I have with residents and their families.

The grieving process is teaching me many things and will continue to do so. I will share some biggies for me:

1. Death is not necessarily bad if you leave behind a legacy which helps others.

2. The journey of dementia can teach you so many things about life, living in the moment and discovering yourself as a person and what you stand for.

3. Values and ethics come to the fore with dementia care. You discover what matters, what doesn’t, and what you have to fight for.

4. Older people are so valuable, wise and funny and we often don’t take the time to really nurture them and learn as much as we could from them. Take the time and you will reap the rewards.

5. Support is so comforting when you open up to like minded people that understand where you are at and what you are going through.

6. Sharing stories is therapeutic and regularly talking positively about the person who has passed away is important.

7. Thanking those that helped along the way allows them to be encouraged to keep doing this for others.

8. As a man I no longer worry if I shed a tear in public. It reminds me I am human, and is respect for how that person made an impact on me.

9. Grieving can be positive and is a great excuse to roll out some great old stories and have a few laughs.

10. Grieving for my Dad makes me a better Dad. I regularly draw on what I learnt from him and use all the ‘life tools’ he instilled in me.

What’s Going To Happen When I Go Into A Nursing Home?

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I currently work with laptops, PC’s, mobile phones, Ipods, Ipads.

I expect wifi everywhere and all my technology to customize everything for me.

I watch Youtube videos, Apple TV, Netflix and Foxtel. I like to hold the remote and change channels when I am bored.

I listen to Apple Music and Spotify and no longer use CD’s or records. I like my music loud.

I catch Ubers instead of taxi’s, I ask Siri for just about everything, and I Google everything else.

I buy things I like online & they get delivered to my door.

I now scan my own groceries, I rarely use money and I am tapping my credit card everywhere.

I use my microwave more than my oven. I don’t play board games, I rarely read paperback books & I don’t like craft .

This is how I now live….Will the nursing homes be ready for me if I get dementia soon?

Hmmm…something to think about!……

PS – UBER Care is now in Australia

Emotional Intelligence – The ‘X-Factor’ of Modern Dementia Care

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What is emotional intelligence?

DEFINITION:

the capacity to be aware of, control, and express one’s emotions, and to handle interpersonal relationships judiciously and empathetically.

In Basic Terms – emotional intelligence is ‘being smarter with feelings’.

I believe this is the special ability of champions of dementia care to be able to determine other people’s feelings (and their own), and use that information to guide that person’s thinking and behaviour, and to manage and/or adjust emotions to adapt environments to reach a positive outcome for the person.

“People with dementia can no longer rely on facts, logic, reason or memory. It is your feelings and emotional truth that you trust. Emotional intelligence is seen as the primary competency in providing emotional care. Feeling you matter is at the core of being a person. Knowing you matter is at the heart of being alive.” (D.Sheard 2015)

I learnt about this concept from Dr David Sheard from Dementia Care Matters in the UK. A year or so ago he wrote the following inspirational passage for me, and at the time I was not 100% sure what he really meant. I now understand what he was trying to tell me and realize the value in his words of wisdom which have now become my mantra:

“Advancing great quality dementia care requires major culture change. A culture change movement needs people who totally grasp the scale of the challenge ahead. Individuals committed to this need to come from a place of heartfelt passion, emotional intelligence and with a dogged determination. Promoting a new culture of dementia care is not for the faint hearted and requires the rare ability to reach a wide healthcare audience inspiring them to believe it could be different.”

Publishing False Hope…I Am Over It!

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Whilst I would love to have a cure or some positive methods to help people with dementia I am so tired of reading each day in the newspaper some ‘hair-brained’ study claiming to help, stop or cure dementia.Whilst I am all for keeping dementia in the public eye and creating awareness – let’s not keep publishing false hope and snake oil remedies either. This just devalues the genuine and factual research being done. I am also skeptical that the funding allocated for genuine research is being funneled to  crackpot studies with little to no hope of success or breakthrough. The small sample sizes for each study is also a major concern. 

I personally believe we should only publish so called cures and remedies when they do just that…when there is proof that they are curing people, and not before.

People with dementia and their families deserve to have factual information and if we haven’t got any cures let’s talk about some positive strategies to care for people with dementia. We have a Tsunami of people being diagnosed with dementia and we need to have our positive care models in place ASAP.

Enough is enough.

‘Repeating Sentences’ – A Simple Solution

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Many people with dementia often repeat sentences within minutes of saying something, and it’s tiring and frustrating for the family member or carer. Several years ago I did a presentation for 35 carers and asked them what their No.1 biggest frustration was caring for people with dementia?

Answer: “Residents repeating themselves”

I learnt early in our story that a person with dementia has a very, very short term memory. This didn’t mean a lot to me at the time until I worked out Dad was retaining information for only about 2-3 minutes before forgetting.

People would often ask me how do you put up with answering the same question over and over?

The best way I could think of to explain to others was to imagine the person with dementia has an etcha sketch for a brain. They use it for a few minutes, then it automatically erases the information every 3 minutes to a clean slate.

So how did this help??….I would expect Dad to forget what I had just said, and this totally helped me deal with it. I could then train myself to use short and simple sentences that saved my own voice and frustrations.

If you expect the repeated sentences to come, you don’t waste time and energy trying to reason or work out why the person is not understanding you.

Hope this is helpful for both family members and carers….

When You No Longer Have to Care… (But still want to)

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It has been well over a month since Dad passed away and I had no idea how I would feel about my dementia advocacy. I have been so busy I have had very little time to grieve but I am pleased to say that I am still as passionate as ever. It is a strange feeling breaking daily routines and not having to care for someone.

I walked back into the nursing home yesterday to see how I felt about everything. I wanted to know if the residents remembered me? Straight away residents came up to me with their quirky ways and interacted. One lady came over and held my hand, others had deteriorated, and some had died.

It was nice to watch several residents’ faces ‘light up’ when they saw me, which tells me that they remember me as someone familiar. I bantered with the residents about their meals and had another “conversation about nothing”…which is what we do with dementia:-)

Dad’s former room is now occupied by another man from my Men’s Group and amazingly the room was setup almost identical to the way we had it for Dad. The man is tall, kind and gentle and has the same vibe as Dad, so I am really happy.

I miss the residents and I miss the staff and watch them rushing around during meal time…..they look stressed. One staff member said to me that many family members talk about coming back to volunteer in the nursing home after their loved one dies, but rarely do and was pleased to see me back.

So what’s next for me in 2017? Not sure….but the radio interview was a big challenge to overcome, and I recently helped with the design of a dementia friendly park in Mt Barker which was interesting, and I am now up for whatever comes next. Maybe our ‘DD’ members could give me some suggestions as to what I can do next to get ‘dementia on the agenda’ and help families and carers?