By Sijmen Grunbauer on behalf of Elva Grunbauer

My husband and I have been living here in the NT for many years on our yacht, our only modest home. In November last year, I had a stroke at home that proved to be caused by a blood clot.

My husband had me moved to the emergency department at the RDH where the blood clot was dissolved. After I was sent to the ward, my husband was then advised to send me to palliative care as there is no hope that I will recover. My husband was sure this was not right and did not agree to this. As I could no longer talk or swallow a feeding tube was inserted through my nose.

I am well aware that with the correct treatment and rehab I may well recover, maybe not as I was before but even so we had high hopes.

After some weeks, it became very clear how wrong we were as there is no constructive input or exercise plan from Royal Darwin Hospital.

Thus, my husband started to investigate on the internet and found a podcast by Dr Ettie Ben Shabat who explained the breakthrough that has been made by extracting information from the brain with an MRI in stroke patients, that not only shows the damage but also what can be retrained over time by special treatment and exercise.

My husband requested a copy of all the scans that RDH had taken and sent them to Dr Ettie, who wrote a report of what and how to help me. In Dr Ettie’s report, she mentioned that the scan was of poor quality as it is fuzzy and too thick in slices; in other words, unprofessional.

This report it seems has been totally disregarded by the doctors here at RDH.

When my husband had a meeting with a new doctor, we had some hope that things might improve.

Unfortunately, that proves now to be wrong, and my husband is now forced to give up on me after 61-years of marriage.

His stomach was churning and he felt sick thinking about it, he could not sleep at all.

He was asked repeatedly what his plan is with regards to me, and he said that this depends on the outcome of my rehab. He spoke to the allied heath doctor and it is clear that there will be no rehab.

The Hospital now charges me for being in the hospital and that makes it impossible as now the financial strain is too great. Selling our home, the boat is not an option. They are convinced that I am a waste of time for rehab.

If they did rehab, part of the rehab would be the use of a tilt table, where the patient is placed on the table securely and then slowly tilted. At first by small angles in order for my feet to take the body weight.

A tilt table is out of the question at RDH and probably collecting dust in the old storeroom. Not to be used ever. Not just for me, but not for anyone else. We have not seen a tilt table in the gym in Palmerston hospital that is ready for use. This proves that patients in my condition regardless of age are a write-off and will not be treated for rehab and die a very lonely death.

I am in pain every time my right arm is moved. There are no exercises on my arms and legs, all painkillers the hospital provides come with loads of negative side effects. The result will be that I am doomed to never stand on my legs again.

I have not had a proper bath or hair wash from the day I got here and my head feels horrible.

Dr Ettie’s report means absolute zero to them and I will become a large jelly-bean. We do not know of any nursing home that is willing to look after jelly-beans, with the result being that I will continue to take up a bed at RDH for the rest of my life.

That bed is then not available to others that are in need and will have to wait for their urgent operations.

We will have no funds to help me as the hospital has taken my pension and therefore my husband stops visiting me. He will not be a party to my horrible treatment, as he has to look after himself now. This is why he is no longer seen at this hellhole ward knowing that I am written off to die.

This is breaking his heart and it will destroy my heart, but the hospital staff does not care one iota. I am now trapped, I no longer wish to be here. Please discharge me, while I am still alive.

My husband has Power of Attorney, but that has also been disregarded, except if the doctors are in need of his signature, as they do not take responsibility for their actions. The doctors at RDH will not tell us the real and honest reason for any decisions they make. It’s all Cloak and Dagger, communication is extremely poor, we feel like beggars and this must end.

Soon my husband will re launch our boat and sail away over the horizon. He may well find other company. I have no one left and will surely fade away in loneliness.

We do now understand why the doctor on arrival suggested to send me to palliative care to die. It seems that RDH does not have the expertise or staff to deal with any but the mildest form of stroke and therefore send the rest of us to die regardless of age.

How on earth can we have trust in the operation and politics at RDH? Is this not slow euthanasia by stealth, what have I done to deserve this?

If the parents believe that withholding treatment to the child and as a result the child dies, than the parents may well find them self in jail.

But if a doctor or hospital believes that withholding treatment to a patient how can that be OK?

I am fully aware that there is more that can be done, it’s called rehab. Please help me.

Sijmen Grunbauer on behalf of Elva Grunbauer, Darwin

If you want your letter to the editor published, send it to ntindependent@protonmail.com. Please include your name, address and phone number for verification. We will only publish your name and suburb or town. We do reserve the right to edit the letter for length and clarity purposes. PRIVACY POLICY: You can find our privacy policy by clicking here.