The Long Pause

There has been a long pause in between blog posts and with good reason.

Sadly my dad passed away and people close to me know I have spent a year or so organising my dad into aged care and supporting his partner who also was unwell. Juggling the needs of an ageing parent is not easy when life becomes a challenge for them and my hat is off to the many of you who that are doing this juggle now. Some of you are with young kids as well, you are known as the Sandwich Generation.

People have been contacting me asking questions in relation to their own ageing parents so I’ve written this with the hope I can point people to this blog so they can make sure they are ready when the time comes in the future.

I was inspired by some of the adult children I met in my dad’s aged care home. People there showed me that no matter what, there is a positive way of looking at things. And believe me, life in those places is not a barrel of laughs but they do have little diamonds that shine.

So many human stories hidden in dysfunctional bodies and minds. I could write what I learnt there quite easily. The biggest lesson was, don’t judge people so quickly as there is always a story. They were all once young too. On a particularly bad day there a resident who lived there hugged me. She had no idea how much I had needed that hug at that time but I smiled for the first time in ages. As I said, little diamonds that shine.

This blog isn’t written to depress you, far from it, it’s to empower you with knowledge.

95% of parents don’t want to leave problems for family when they die, but only 60% have done the documentation.

It’s a scary statistic so I want to make sure that you are aware of paperwork that is REALLY important to have ready for when the time comes. And waiting for the right time to bring up this discussion is really difficult, I know.
Many older people don’t like talking about their death, let alone planning for it. I’ve now had 3 close family members die – each quite differently however after what I just went through with my dad has spurred me to be open about what to be aware of.

Image Source Growing Bolder"
Image Source Growing Bolder”

In my case my dad had said he had done all his paperwork and I had nothing to worry about.

My dad was a very analytical type of person, “reliable” is the word that comes to mind.

However to my dismay, I found out he had gone to his solicitor’s office with his partner, but did not get the all-important power of attorney nor the enduring guardianship paperwork nor the advanced care plan. He had handed me a form with his signature on it but it was not signed by his solicitor.

Looking back now, I realise it was probably the early signs of dementia but he seemed normal in every way. I did not question him at the time & just filed it away for later. He said all I had to do was sign it. What happened years later was when it was all too obvious that he was lapsing into dementia, is that you cannot get any paperwork signed as they are not of sound mind and body by this stage.
What it meant for me was I had to go to the Guardianship Tribunal and prove that these conversations had taken place in front of a panel. Stressful is an understatement, I still remember this tribunal as though it was yesterday even though it was over a year ago. I still remember the stress I felt and was despairing that I had been put in the situation in the first place.

Most people hate discussing death and think it distasteful however if they love you, then press them to make sure they understand.
It is so you can follow their wishes as there may be a time when they cannot express it themselves and you have to speak on their behalf. Trust me, this was such a difficult thing to get through to medical teams in the hospital and medical professionals. If there is the paperwork the medical teams cannot IGNORE your wishes. Unless you have very strong stamina, it can be a constant battle between a medical professional’s wish to heal at all costs against a family member who wants to retain dignity, comfort and pain relief.

So many people say they want to be “taken out in a box” or “I never want to and up in an Aged Care facility”, or other words they want to go in a certain way.
If you don’t have this paperwork- you won’t have a choice.

1-     The Will – For most people, this is the one thing people think they need to have.

2-     Power of Attorney – this lets you look after their financial affairs. As parents get older some of them find it all too difficult to handle any more. In my case Centrelink had seen some strange movements in my dad’s account and wrote my dad a letter which he couldn’t         understand. So I went in with him and became a Nominee so I could see what was happening with him and his money and also went         to his bank to talk to them. His bank manager was so grateful I had turned up and gave me access as well to his accounts.
Her gratitude was palatable.

3-     Enduring Guardianship gives you the ability to make decisions regarding health and lifestyle. This is important for future decisions  like accommodation, medical needs etc. but it still comes with limitations.

4-     Advanced Care Planning – this little beauty is very important. This is for the very end of life. Remember that in this day and age   our physical bodies can be kept alive thanks to modern medicine even though the person may no longer want to be around.
I had to fill this in with a nurse and my dad’s GP and it dictates how much intervention the person wants. I’m talking things like “Do             you want a stomach tube inserted if you can no longer eat?” kind of things. It’s the real nitty gritty stuff you don’t want to think about,         but you have to. It’s better to do this when you are not under huge stress and better if you can discuss it with family and the GP.
This is all about the person’s values and beliefs. THIS should be done when the person is of sound mind and body with a discussion between you and your parent so you know where to draw the line and say STOP or say KEEP GOING!

This should also include an Advanced Care Directive. Doctors refer to this directive if the person can no longer make their own decisions. Trust me, you need to encourage your parents to have one of these. No matter with all the other forms, doctors will make their own decisions about your parent but this directive by law is the one they have to follow.
You can just write one yourself but there is a great one online for free here

There are some great resources out there but I suggest you start with the website Planning Ahead Tools here

Another great resource I have blogged about before is a book called The Gift of Preparation, written by a wife who suddenly lost her husband.

A tale of caution. I don’t want what happened to me to happen to anyone else so if this helps just one person I will be happy.

I thought that Palliative Care was a natural progression of Geriatric Care. IT IS NOT!
I assumed that pain management was a given.

Please make sure the GP looking after you and your loved ones believe in Palliative Care. If you are not sure, either ask the GP directly who may begrudgingly say yes or better yet, phone up Palliative Care in your area and ask them. Tell them the GP’s name and you will know very quickly from their reaction, remember they have to be careful about what they say. You have the right to sack the GP and get another one who does.
The Palliative Care team know the GP’s who believe in pain management and those who do not. I am sure no matter what your belief system is, you want the person you care about to die in comfort with no or little pain. Palliative Care ensures that this happens.

And of course as nothing is ever simple- remember each State has it’s own laws when it comes to health, so if your parents have moved interstate in their retirement, check that you have the right documents for that State.

die with dignity

7 responses to “The Long Pause”

  1. sue hawkins says:

    Wisdom for the pain. A cogent article which should be required reading for everyone.

  2. Jan Delmas says:

    Hi Sue, excellent article and so true. As you know I went through something similar with Mum but we managed her illness and death at home with me. Fortunately Mum had done all the ‘right’ things with Power of Attorney and Medical Guardianship.

    What that experience did for me was underline the fact that you should never wait until you are old as you never know what’s around the corner. So the first thing I did as soon as I could after Mum’s death was go to my solicitor and re-do my Will, have a Power of Attorney and Medical Guardianship done as well as a Living Will which states my requirements should I become incapacitated. I gave that to my doctor to put on my medical file. All the rest I have discussed with my close relatives and expect them to comply with my wishes. I told them I would come back and haunt them if they didn’t!

    I encourage everyone to at least talk to their families about their wishes. I know it can be difficult but death is a fact of life and the peace of mind that you get when your affairs are in order is worth it.

    Well that’s my two cents worth, again thanks for your article and my deepest sympathy on the loss of your father. Take care of yourself, Sue xx

    • Sue Heins says:

      Thank you Jan
      Yes I am like you- about to do all the paperwork for myself as well. The fact is we have to put trust in someone that our wishes are going to be carried out when we no longer can manage. And that is very challenging.

  3. Jane Floyd says:

    I feel your pain, Sue. It happens all too often. As for the paperwork, in addition to what you have said, it’s important this can be easily accessed. I have also recommended in my blog that the paperwork needs to be collected and kept in one, safe space.

    Palliative care should happen so much earlier than it does – but the medical system can be so focussed on saving/extending life that it happens much too late in the process.

    • Sue Heins says:

      Thank you Jane, and a perfect article for people to read, thank you. I almost got the impression that extending people’s lives without consideration for their quality of life was a medical experiment.

  4. Sue Heins says:

    So happy to see the doctors are now being told to listen more. Great video!
    Hope this helps many families during an extremely stressful time – make sure you find an understanding doctor.