Because I was so young when I had my stroke, our health system ‘failed me’. They couldn’t help provide Len with some nursing support in our home because all that was available was the Aged Care Assessment Team (ACAT) and that only applied to aged or people in hospital who needed 24hr care and there was no other option other than what our doctor said, to take me back to the hospital, because someone had to be there to raise our daughter.
Because I was so young when I had my stroke, our health system ‘failed me’. They couldn’t help provide Len with some nursing support in our home because all that was available was the Aged Care Assessment Team (ACAT) and that only applied to aged or people in hospital who needed 24hr care and there was no other option other than what our doctor said, to take me back to the hospital, because someone had to be there to raise our daughter.
Watching my beautiful husband defeated and broken, forced into leaving me at the hospital with tears rolling down his cheeks as he waved goodbye crushed me.
Tania and Len
I was crying and blamed myself for putting our beautiful family through hell, I was so fucken angry ’cause I just lost the two most important people in my life, and my dream family was lost to a fucked health care system.
The hospital didn’t take much time before they shipped me off to my first nursing home. My beautiful Lenny and his mum met the ambulance at the nursing home and came in to help make sure I was okay and to check it out.
The very first thing that I remember about the nursing home as I was wheeled in was the smell of urine, it was so strong that it took my breath.
Then when I got to my room the nurse introduced me to my two room-mates; one lady was deaf and the other lady yelled all the time, they would give her chocolate to shut her up for about an hour or so.
After the ambos slid me onto the bed and left, Len and his mum sussed out the room and tried to help settle me in. Lenny went to move the bedside table to the left hand side so I could use it, and the bloody leg fell off and it fell over. We were shocked ’cause the leg was just sitting there propped up, holding up the table. We cracked up laughing; the furniture was old, damaged, and you’d have got better off the side of the road, not to mention my bed ends were held on with big ass wood screws everywhere and the bed-side rails were the wrong ones for the bed. So Len had to get tools from the car to remove the rails while someone went and got the right rails.
When the rails came Len put them on my bed to make sure they were right whilst his mum packed all my stuff away, trying to make it a little homely for me with pictures of Faith and Len and little knickknacks around me.
That first night was so bad. The lady next to me yelled out all night for chocolate and the staff ignored her most of the night. I eventually buzzed them a few times so they gave her a bit to quiet her down, but I still didn’t sleep much at all that night.
After my stroke
The next day my beautiful sis Stacey came to visit with her 12yr old daughter Emily, and the lady was screaming so bad next to me that Emily broke down crying and said “Aunty Tan shouldn’t be in here, she’s too young!”. She begged her mum take me home to live with them. I ended up having to put my portable DVD player on with headphones so Emily didn’t have to listen to the lady screaming for chocolate. Stacey and I held each other’s hands crying and cuddling in disbelief, trying to understand why the fuck the system failed me, forcing me into a nursing home at 39yr old. Stacey didn’t stay too long because Emily was so traumatized from seeing me in a nursing home and being put in a room with the screaming lady.
That arvo my sis Deb came to visit. She got the staff to put me in a lounge chair so she could push me outside to get a break from the lady screaming out, we sat outside for a few hours then went back to my room again. On our way back to the room we passed old people sitting there staring blankly waiting to die. Another man was hanging half outta his bed.
Lenny and Faith turned up and said “We’re getting you outta this dump and taking you home until we find a better Nursing home”, I was so happy to get out, but I felt sorry for the people in there still because it was so awful. I was so happy to be leaving this awful place and I called Len my “knight in shining armour”.
My daughter was so angry that the people were living in such a run down and neglected place, when I was being wheeled out you could see old people half hanging outta their beds as we went past and my daughter swore and said “Mum, you can’t live in this shithole and neither should they”.
I was so anxious thinking about the next nursing home, wondering if it would be like the one I had just left.
When we got home Len and I started looking at other nursing homes in the area. We decided that we would go with a Government run nursing home as we figured should be better then the private nursing home that I just left.
Well, we eventually found a nursing home in the Newcastle area that was Government run and went for a visit to suss it out. So we met with the nurse unit manager (NUM) and she showed us all around and told us that the younger people go on the first floor and the older people live on level two.
So after the tour we agreed that this is the place I would live and did all the paper work.
When we arrived next day the NUM informed us that I would be on level two until a bed became available on level one, which they didn’t inform us of after we agreed that I would live there.
Len and Faith dropped me off on level two and I was sharing the room with three other old ladies that didn’t talk. They packed all my clothes away and put up pictures and drawings Faith had done for me on the wall and stayed a few hours.
Len and Tania’s wedding in 1989.
Before leaving I asked Faith to wait out in the hallway so I could talk to her dad, I told Len that I wanted him to find someone else who can be there for him and Faith and then I gave him my wedding ring and told him it’s over and then he kissed me, we were both in tears, and he said he will never stop loving me, as he left.
Tania Lewis is an Awabakal woman with a disability who is wheelchair bound. She is married to a loving hubby of 28yrs, Leonard, a proud Wiradjuri man. Together they have a beautiful 19yr old daughter called Faith and a little dog called Moo.
Tania’s passion passion is helping our Mob with a disability get the best they can outta their own life, from helping them with the NDIS or their health issues or yarning circles at our local Art Gallery.
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