Tuesday, April 28, 2015

'Insight' on SBS ONE: 'Dancing with Dementia'

In a special edition of 'Insight' tonight, the program is set to explore the number of Australians living with dementia - that figure is set to soar in the coming years.

As the group gets larger many people with dementia are finding their own way through memory loss, determined to let their own personalities shine through.

They are fighting what is now Australia’s second biggest killer, ahead of stroke and cerebrovascular diseases, recent ABS data shows. (At the time of writing my book 'The Australian Ageing Generation Handbook' in 2013 and 2014, it was the third biggest killer). 

This week, 'Insight' hears powerful stories of sacrifice and success from people living with dementia, and the families that support them.

The program asks whether it is possible to lead a normal life with dementia and hears how humour could help balance out the despair of living with this debilitating brain disorder.

Guests include:

Elmer and Joan Anderson
Elmer: "Between the doctors, Joan and myself, we decided that, yes, I would go to a facility when they felt it was necessary so that I wouldn't harm my dear wife ... And that is exactly what happened, I had an episode, we went to the doctors and he said ‘it's time’."
Joan: "Our relationship's an awful lot better because now Elmer seems to have accepted what's going on and so because of that, the anger is not there as much and he is ... a much nicer person."

Doris Younane
"I mean the behaviour changes every day and mum went through some very, very aggressive, difficult times, but we just kept role playing, playing with her. So that we took the sort of anxiety out of mum, I suppose."

Alzheimer's Australia NSW's ambassadors - PJ Lane, Ita Buttrose and Doris Younane

Ray Morgan
"I find with dementia, anything you can enjoy helps you with the condition."

Graeme Samuel
"It is so, so fundamental now that we show people in the community what it is that dementia is really all about and importantly what it's not about. That people can live in the community and be very productive members of the community for so many more years and that you shouldn't actually fear someone having dementia or look at them with any sense of disassociation or stigma such as poor mum had to endure when she, you know, was diagnosed and when she started to show the symptoms."

Alzheimer's Australia's Graeme Samuel AC - the National President of the organisation

Insight is hosted by Gold Walkley Award-winning journalist Jenny Brockie and airs every Tuesday at 8.30pm on SBS ONE.

See: www.sbs.com.au/insight
Twitter: #InsightSBS

Sunday, April 26, 2015

The conversations all couples should have - but probably don't. Important carer questions for the care of a parent.

Often I am compelled to write a piece when the mood takes me. I literally have to stop what I am doing as I feel like I am going to burst if I don't write it all down.

And that's what I did just now. I succumbed - again - to watching an old episode of 'Sex and the City'… it was the very last episode, after all and that always demands a watch when I spot it on TV.

And so 'An American Girl In Paris' Part Deux is playing and we get to that scene where Miranda and Steve are discovering that Steve's mother's memory is waning… sketchy and best. At its worst - mistaking Steve's son Brady for a young Steve as a child.

What happens next is that they take her to hospital (to get her 'checked out') and it's then that Miranda's often annoying mother in law becomes a vulnerable woman in need, and Steve and Miranda's lives as a couple with a baby changes forever.

In the first movie after the series ends, we discover that Steve's mum in fact is now living in a nursing home, with a dementia diagnosis.

In the very last ep of the series, we do see Steve and Miranda check out his mother's home and they see that her living quarters are far from ideal, and Miranda looks at Steve and says that his mother can move in with them. Steve asks, "Really?!". He is hugely relieved. "Why do you think we have this big house?" replies Miranda, and although you can see the fear in her face, she means it.

And I recall watching that episode for the first time all those years ago - back in 2004 - when I was one year into my marriage, and thinking: gosh, what will it be like when my mother needs care like that? What will my husband say?

We had certainly already had discussions about this, while we were dating. My mum was widowed when I was 13, and that's when - as close as we already were - we became absolutely as thick as thieves, mum and I. And so, I knew that whoever I married would have been subjected to that discussion: will you be okay with my mother being cared for by me when she is older and needs me and is even more vulnerable than she is now: a strong but solo parent at the time; a woman who I could foresee would need help later.

And, at that time, newly married, I did broach the topic on many occasions, when appropriate. And each and every time, he rose to the challenge. Yes, you can freely care for her. Yes, you have my support. Yes, she can move in if that is necessary.

Now, the road to all of that was very tricky. It was far from smooth.

The variables are pretty easy to explain to you, though: I was a new mother when my mother was diagnosed with a terminal blood disorder. Three weeks, she was given to live. Seven months, the age of my two kids. One, solo - that was me. Feeling devastatingly alone, despite having a wonderful husband who helped me along the way, 100%.

The reality was that my mum's life was extremely valuable. And so was that of my vulnerable, very young twins. And mine. In my book I write that I did not care much about my life at that time. I was spiralling into depression so fast - why wouldn't I be? My notion of shiny, happy new motherhood was hugely tainted.

And so, when - with drugs that worked miracles, and my love and nurturing and care (my brothers will attest that I "brought her back to life") - she survived that awful disease, mum was ready to go back home. In fact, she downright craved it. The silence and the freedom of a non baby filled home, her own home - who could blame her?

But I still kept up her care and from that point on - made all her meals. She felt incapacitated and I wanted to ensure she was nourished and cared for. Over the years, when she was in and out of hospital, she regularly stayed at my home for weeks on end. And she willingly wanted to go back home to her haven when she was well. I was there almost every day anyway and spoke to her several times a day. This was our life - high maintenance care for her, even if it wasn't high level care… yet.

By the time my mother was diagnosed with dementia - my kids were only around age two - she was even more of a consistent worry in my head, and beyond that, required constant man-hours of my time to be there with her. I knew by then I simply could not go back to work - she needed my care a lot. And so, freelance suited me perfectly. I took on project work, but always made sure I was available for kiddie day care pick up, and appointments galore for mum. I was still a mother of young kids, you know… and a newly diagnosed child with autism, my two year old son.

Through all these stages I kept a constant and open dialogue with my husband: mum is getting worse, what shall I do, what shall we do, yes I can cope, yes I can still work and look after everyone, no I am not falling apart, stop worrying about me, no I am just angry because I am tired, yes you all still come first (which means I come last - but  I won't say that or you'll worry about me, so please stop with the questions).

And so, you know about me, my story… now over to YOU.

These are the conversations to have with your partner, and they also apply to the siblings:

Stock family multi-gen photo. I don't know these people, but they could be your family!

- You must, must talk about the care of parents while they are still healthy.

- Have even more urgent conversations if they are older (and if you follow what the stats tell us these days, chances are you are getting married older, and having your kids older, which means that your parents and in-laws are older too - which means they are more likely to need higher level care - and be sicker - sooner).

- Be very specific - talk about where they will live if they suddenly need help in the everyday. 

- Talk about how you feel about nursing homes. Which means you need to talk about the family home being sold perhaps years sooner than any of you expected.

- What if mum goes into an aged care facility, but dad stays in the family home? That means even more time carved out for both parents at two addresses. How will you all cope? Who will do what?

- How will you work? Will you work? How many hours or days?

- If you cannot work - how will you be compensated. Listen very carefully to this question: it is NOT about the money. Your parents deserve your care and love sans 'payment'. But a small sum of money so you can live and contribute to YOUR family budget and bills will become important the longer you do what you for a parent. While your siblings are earning a wage - and you cannot - care based on love only wears a little thin when you are poor and taking on the brunt of it all.

- Who will care for the parent/s when you need a break? If you become the primary carer for a parent, especially if they are living with you, you need to know that your options for freedom are vastly diminished, in fact… almost nil. Do you place your parent in respite care? Will you siblings take mum or dad on the weekend? You may get some resistance here ("But WE work all week, and we want a break on the weekends!" Guess what… so do you! Speak up, and work on an agreement. Often you will find nobody will want to help unless you are drowning. You do not want it to get to this stage).

- What about your siblings? How much care will they take on? The biggest 'danger' is having just one sibling taking on all the care of the ailing parent - and the others assuming that sibling has it all in hand and therefore not offering up assistance with the care. Big, big mistake brewing there - huge resentment on its way. Trust me: even if you are saintly and lovely and have kindness overload, you WILL experience carer burnout. It's not about energy levels - it's about emotional and mental and physical exhaustion. ASK FOR HELP. Let others work their lives around their parent also. It is completely okay for one sibling to take on more care for the parent if they have more time up their sleeve, and if they are not working. But often that sibling will continue to not work to accommodate a sick parent. It is not okay for anyone to take advantage of that (even if they do it without spite).

- What about your brothers or sisters in law? What are the expectations from them? Are there any? If no help is forthcoming, you can safely assume they do not want to help. It is your call as to how far you'd like to take this conversation. Most leave it at that, and that's not a bad thing. We all get a turn of the yukky stuff in life, and one day, they too will understand.

- When you figure out a care plan, contact a service provider for help. Government subsidised carers who shower a loved one, and supervise meals, and take them out for day trips or shopping or take them to an appointment. The level of care you ask for is up to you. And you can change those boundaries anytime. I set up transport care for my mum in case I needed it - but I never used it as I knew mum wanted me and only me for appointments and I did not want to be anywhere else during that appointment, as her main carer.

- The point I am making above is that you can pick up any family shared care shortfall with paid and inexpensive care. The analogy I always use is that I was driving the bus of mum's care. Whoever wanted to get on or off that bus (family members helping you with care) was fine, as long as I knew the bus timetable ahead of time. If family care hours are sparse, rely on paid care to help you. The objective is that the loved one is cared for. Constant resentment and anger about who is providing care is very bad for your health, and will lead to unnecessary resentment, when you should be in a good frame of mind while you are being a carer. Just go about doing what you are doing, and let perhaps less interested family members join the plan when they are ready to. This is not contradictory to all I have said above. It is simply an acknowledgement that sometimes family members are not interested in caring for a loved one. While that will be a bitter pill to swallow, sometimes it takes time for a family member to see the gravity of a situation. In the meantime, that person is still needing care, while everyone is trying to work out what their role is. Keep going.

- Talk to your family members - and spouse - about expectations of what they deem their threshold of providing care for a loved one that may not be their mum or dad. So, would you be willing to help shower your father in law if he is in your care? Or make him dinner if your wife is out? Or help him with a toileting accident if you are not home? Must-talk-about, all of it!

In fact, ALL of these elements are hugely important to discuss.

It does not matter if you think you are completely capable - you probably aren't. And you will become a martyr. And martyrs gets tired. And angry. And by definition - die for the cause. (There is much more on this in my book 'The Australian Ageing Generation Handbook' - I am proud that, with my psychologist's help, we identified that this is what I was being. And it was going awry… fast).

SO: go, yes… live your life! Have fun! Have adventures! Do young people stuff! Spend lots of time with your young families.

BUT: have these talks, about these topics, and have them NOW.

Don't wait until a loved one is sick. And if they are: talk, and talk honestly. It will serve you well.

And remember: the worst thing you can do is blame your spouse for the inherited hardship they have 'brought upon you' by having to change your whole life (and that of your young children) to care for the sick parent. That kind of talk serves nobody and is a one way ticket to a major argument. Sure, talk about it, get angry about the situation, be resentful that 'life wasn't meant to be this way, it's our turn to have fun and live and raise young kids, etc, etc'. But don't stay in that frame of mind because it is poison to a relationship.

Remember, it will be your turn soon. YOUR parent will become ill - perhaps present even greater issues - and you will hope your partner will be supportive to you, on something you cannot control.

This is the biggest thing to get from all of this - you DO NOT know what life will throw your way. You must roll with the punches. Marriage and partnerships are EASY when parents and in-laws are young and fun and self sufficient, and even better when they are babysitters and providers of 'things' and benefits for you. Life cannot always be that way. At some point, you WILL have to give back. If you work out a plan, it does not have to be 'the end of the world'. You can be a carer and be happy.

Get ready to embrace it all. It's going to happen anyway.

Thursday, April 23, 2015

102 year old dancer sees herself on film for the first time: Alice Barker VIDEO

This was posted only a few days ago and has since reached viral status.

Alice Barker was a chorus line dancer during the Harlem Renaissance of the the 1930s and 40s. She danced at clubs such as The Apollo, Cotton Club, and Zanzibar Club, with legends including Frank Sinatra, Gene Kelly, and Bill "Bojangles" Robinson.

Although she danced in numerous movies, commercials and TV shows, she had never seen any of them, and all of her photographs and memorabilia have been lost over the years.

With the help of Mark Cantor of http://jazz-on-film.com these people finally got their our hands on three "Soundies" Alice appeared in, and were able to show them to her for the very first time. She had never seen herself in motion in her life!

Here is the video:

The YouTube description continues:

If you'd like to send Alice fan mail we would love to see her get the adoration she deserves after so many years! (We'll do our best to read some of your comments to her as well.):

Alice Barker
c/o Bishop Henry B. Hucles Episcopal Nursing Home
835 Herkimer Street 
Brooklyn, NY11233

For more info about the dancers of the Harlem Renaissance, we recommend the lovely documentary "Been Rich All My Life" —several of the women in the film danced with Alice back in the day!

To clarify: We are just friends of Alice who made this video. I'm a volunteer who visits the home with my dog for pet therapy, and have known Alice for 8 years. The woman in the video is the a recreation leader at the home. This was filmed as an afterthought, and we're so thrilled that it's brought so much joy to everyone and attention to Alice, who is loving it! Thank you all!

Monday, April 20, 2015

Dear Kate: Living with Grief by Nancy Comiskey

This article had me glued until the end, reading it on a sleepy Sunday morning.

It is the most powerful account of grief  - and specifically - the death of a child. Not much (that I can see) is written about the deep and cutting grief of losing your son or daughter.

There isn't even a word for it. A child that loses both parents is an orphan. A husband who loses a wife is a widower. A wife who loses a husband is a widow.

I have included an excerpt here, which you can continue reading in link below.I have included it on this blog page as I can relate to the intense, still ongoing grief of losing my mother. Grief comes in waves, and grief is different for everyone. I do believe that losing a child is a grief like no other. Read on and share if you like. (Photo below of Nancy and her husband, and their son and family today).

Dear Kate: Living with Grief, by Nancy Comiskey

Following our daughter’s death, my husband and I saw no end to the grief. Yet we have somehow discovered meaning, hope, and even joy after life’s most terrible loss.

One morning in early June 2004, I peeked into the room where my 23-year-old daughter, Kate, was still curled up in the white wrought-iron bed she had slept in as a child. I paused for a moment and gazed at her lovely face, framed by wild, curly hair that spread out like seaweed across the pillow.

Standing there, I said to myself, as I sometimes did, I could not draw another breath if anything happened to this child.

Five months later in Bloomington, as Kate drove to Indian Creek High School to teach freshman English, a 45-year-old man high on opiates and cocaine crashed into her Honda Civic. In the emergency room, a nurse snipped off two tangled locks of her chestnut hair for me. Two days later, when I gently washed them in our bathroom sink, the water turned pink with her blood.

Yet I did draw another breath. And one after that. And one after that.

On Kate’s first birthday after her death, I wrote her a long letter. I planned to burn it and put the ashes in the stone wall my husband, Steve, was building in her memory at our cottage in Maine. But at the last minute I decided to make a copy. Every birthday since then, I’ve written her another letter, telling her about births and deaths, marriages and breakups, kindnesses and disappointments—but also about everyday things like a new kind of Friendster called Facebook, the YouTube honey badger, and the antics of her little Lab mix, Lola.

Ten years have passed since I last brushed Kate’s hair from her cheek. I’m not the same person I was then, and I know now I never will be. But I do the best I can with the life I have now. A year after her death, I wrote about my daughter’s too-short life in “Kate’s Story” inIndianapolis Monthly. I had “no brilliant insights on healing and hope,” I said then. Nine years later, I’m sharing the story of what I’ve learned since, along with passages from those birthday letters to Kate. If my experience helps someone better understand the loss of a child, if it offers hope to those facing challenges of their own, then Kate’s life continues to have meaning. And that is a gift I can still give her.

Read the rest of the article here on the Indianapolis Monthly site.

Photos of Nancy's daughter Kate below. Rest in peace, Kate. Nancy - what a woman. You will help so many people.