He Had Never Left Us

On This Day five years ago my mum went into her only time in respite. It had been a desperate time for my son and I. Still traumatised by what we had gone through in Sydney, trying to do the right thing by mum and without transport most of the week it was a nightmare trying to get things organised.

D the Public Guardian had taken on the sourcing of care homes and after her saying there were literally no permanent places available within Lake Macquarie City I told her Newcastle would be fine. Within a day or so she called to say Tinonee Gardens in Waratah, Newcastle had a respite bed coming up a few weeks later.

One of the home care aides had told us stories about being sworn at in many different languages at Tinonee Gardens and that she had enjoyed the patients there. So I had some background from a trusted person and it was getting desperate at home with mum walking down the steep hill, forgetting she could not get back up again because of her heart condition. Also her anxiety and sundowning was off the charts. She would antagonise dad on purpose at times and f we had not been there I could see she would be black and blue again, as my relatives had told me she was before dad’s stroke.

We simply had to get her to safety and give dad a break away from her. So we accepted the bed and I then started the preparations for her admittance. This was hard or me as there was so much paperwork. Since I left my emotionally abusive husband earlier that year I had been so traumatised that I had trouble with paperwork and phone calls. Which made this very difficult.

I had to phone mum’s GP and get paperwork from him. Which was no easy task as he was never available to do it. In the end the day before mum was to be admitted I went into the surgery and made such a fuss that the office manager immediately found a GP who would do it for me. I had been very forceful about mum losing the bed and it would be their fault if so.

Then I popped next door to the wonderful Swansea Amcal Pharmacy. They of course were well prepared. The pharmacist and all the girls wished mum well and reassured me that everything would be okay. They delivered my parent’s medication to them weekly and knew how isolated my parent’s home was. Nestled against the bush, with no transport, and tri level. It was beyond unsuitable for my stroke damaged dad and demented mum.

I had to go out several times to get mum clothing as she barely had anything to wear when I moved in. With the help of Vinnies I managed to prepare her enough for her two weeks in Respite. Luckily G was up for several days so we were able to be driven to Swansea to shop and do all these things.

Dad kept saying something would go wrong and mum would not be able to go and sure enough, on the morning mum had to be there I heard a clatter in the garage. I waited a few minutes but heard nothing so continued to gather everything together into a bag that I had hidden in the laundry so that mum would not be alerted to anything.

As I came back into the kitchen dad came through the garage door into the family room. He was holding his arm up in the air and crying in a strange way. Almost hyperventilating. I then saw blood pouring down his arm. As I went towards him I grabbed some clean tea towels and used them to staunch the blood flow.

Dad was crying so hard I could barely understand him but I worked out that he was saying that mum would not be able to go now. He was shuddering with shock. I managed to get the blood to almost stop by holding his arm up and applying pressure. Then I had a look. He had shredded a piece of skin down his arm like cheese off a grater. About a centimetre deep and just hanging off his arm. The whole way down his forearm. When he saw it he started shaking again. I assured him it would be all right and wrapped his arm again and asked him to hold it while I went to get Helen who was showering mum.

She had just got mum out of the shower and we got her dressed together and then Helen came back to help me with dad. She came through and asked him what he had done now. I had found bandages and gauze swabs and spray on antiseptic in my mum’s amazing FirstAid drawer and had them on the counter.

Between us we looked after both of my parents as we filled a bowl with water and I swabbed dad’s arm to see what needed to be done. I had found some small scissors in that drawer and had put them in boiling water and then Dettol. I then cut the strip of skin off and we had a good look. It was going to be tricky to bandage but I knew elderly people’s skin was very fragile and could tear easily so I felt confident we could treat it ourselves.

The main thing was to calm him so I made him sweet tea and mum a coffee. Then we applied all the products. Starting with spray on antiseptic and gauze and finally the bandage. By the time we had finished he was just shuddering. I hugged him and said it would be fine. We would get mum there. He started crying again.

Eventually I asked him how he had hurt himself and apparently he had put his bad foot on a chair to do up his shoelaces and had fallen over. Slicing his arm on the printer stand.

I was speechless but managed to keep a calm demeanour. Dad had only been using velcro shoes since his stroke. Whatever made him go back to ones requiring two hands? He only had one functional one. I went to get his good lace up shoes and put them on him and laced them up.

While all this was going on Tony the owner of the hire car business had turned up to take us to Tinonee Gardens. It was a thirty minute drive and we needed to be there around lunchtime. So as soon as dad was calm and mum distracted I gave Tony mum’s bag to hide in the boot and then I told mum we were going out. She grabbed her handbag, very excited.

Helen left just before us and we locked up, then started on our first journey to the facility. It was a pleasant trip, mum chatting to me and not expecting a response due to her deafness. When she was not talking I encouraged dad to talk to Tony who was experienced in these journeys. It was very stressful and non stop for me, keeping everyone on an even keel. Dad was fine by then, hard to believe the state he had been in a few hours earlier.

We arrived at Tinonee and told Tony we would call him when we were ready to go home. Mum looked suspiciously at the office reception but was okay when the RN Laiju arrived to take us to Daffodil, the building where mum was going to spend respite.

By then mum was fractious, angry and suspicious. She kicked dad a few times as we sat waiting on a settee near the dining room where residents were sitting waiting for their lunch. Eventually the NUM Michelle arrived and she knelt on the floor and took notes on mum’s medical needs. By the time mum had her blood pressure taken she was well aware something was going on.

They then showed us the room off the dining room which was especially for Respite. It was near the nurses station which was reassuring. We took mums bags in there and I put them on the bed. She took them off the bed and kicked them with all her might to the other side of the room. And flounced across to dad and told him to get her out of there. Now.

When he just cried she kicked him. Then she kicked the bags. And threw them. Never seen her like it. My gentle mum. She then said in a quiet deadly voice I have never heard before.

“Tom, you take me home now. Tom. Tom. I am telling you to take me home now or I am going to scream and scream.” Dad just cried.

I took her out of the room to the settee. But she kept going back in and saying similar things. No swearing. Very ladylike. But with the deadliest undertone.

Dad came out and shouted, his way of communication, that he was going to have his prostate fixed and she had to be here while he was in hospital. Mum had no clue what he was saying due to her deafness and just thought her was angry with her.

Michelle came and said mum could sit down at the table for lunch, we could go then. I settled her, dad kept crying which really was not helping things. Then I said dad we are going to have to go. We said goodbye and she started to wail. And wail.

Laiju and another nurse came and got mum and walked her away from the table, half dragging her as she cried out to us.

“Do not leave me here. No. No. I am not staying here without my parents. Mummy. Daddy do not leave me here.”

Absolutely heart wrenching to watch her being semi carried around the corner away from us. We exited the secure door and made our way out of the second secure door. Dad crying all the way. Me phoning Tony. By the time we walked out to the front he was there. He had never left us, on this, one of the worst days of my life. Thus far.




It’s Also About Life

During the last week of March in 2017 dad’s pain was shocking. He had phoned me repeatedly daily, crying. Friends who had demented parents on Facebook were telling me that his reality is different. Others like the lovely Janice knew my dad through my posts and just knew he was in agony. I had told the staff many many times I felt he was in pain from his metastatic cancer. So had the Hammond Care Team (DBMAS) and Morag the team leader who came out to see him after I spoke to them in despair about his behaviours the previous year.

So fortunately did the new NUM. He phoned to apologise after we were told by an RN that dad had not got out of bed after crying the day before. He was crying and crying in pain. My son and I were feeling angry, upset, horrified and powerless. So we got in a taxi and went straight to dad. When we got there he was approaching the dining room from his bedroom. It was a hot day and he had on cord pants, two woollen sweaters and one of his lovely Irish tweed jackets. On his head he had a thick woollen beanie I had knitted him. He was totally out of it, as white as a sheet and was unaware of his surroundings.

The ladies were very worried, especially Betty the non verbal lady, who always sat closest to his room, as he always stopped and asked her if she was okay, did she need anything? The other lady who was really upset was the food prep lady. They all loved dad and knew he never ever stayed in bed unless he was in pain. It is totally against his Irish work ethos to laze around anywhere in the daytime. Indeed when I was younger my mum would save a lot of her housework for the weekends so as not to feel lazy around him!

It took about forty minutes to get dad zoned back into why we were there. My son went down to Kmart to get him some computer stuff and I stayed and soothed dad until he was back to a semblance of normality. He said he had not wanted to worry us.

We were so exhausted after settling dad and from the emotional impact of seeing him so weak that we also got a taxi home. Over $120 in taxis that day but it could not be helped. When safely home with a cup of tea I emailed the NUM and we chatted the next day. He apologised that dad’s pain had not been correctly charted over the weekend and he said it’s not good enough. He contacted the GP who was against Mater Palliative Care being called but the NUM insisted and said I had been after that, as his Person Responsible, for some time.

A week or so later the Team from Mater had been out, dad had a Morphine Patch on for pain and Respiradone for the anxiety and fear that was keeping him up at night. Dad is not silly, he knows. And was frightened of the pain meaning he was going to die soon. Whereas the Palliative Care Team is also about life, and living it well until the end. It has been a year this week since dad started the patches and he is a different man. He now needs it boosting with Panadol, which I had to suggest and insist upon, but his endurance is incredible and a testament to his strength of character.

I have always been proud of so very many aspects of dad’s life, and maybe the way he is approaching his death may yet be the thing I will be most proud of.




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My Mum’s Voice

When my mum went into care the RN on duty would always phone me if she had an argument. Or hit someone. Or was feeling unwell. Late one Saturday morning I received a phone call saying she screamed when the AIN tried to put her top on. And cried and sobbed. They had no idea what was going on but were concerned so let me know they had called an ambulance.

I told them I would meet the ambulance at the hospital. Well intentioned and very sensible seeing as mum was demented, deaf and mostly non verbal due to her deafness. I was there within thirty minutes and while I was waiting I called Norma (their neighbour) and let her know and asked her advice.  She said absolutely make yourself known. I had already done that but I could not get through to the people on reception or triage why I was there.

It is vital to be there for the demented person anyway but especially if they are deaf as it can be terrifying for them. And the actual staff looking after the demented person can have trouble managing their behaviours. I knew all this as I research. A lot. I am in Dementia groups on Facebook and read blogs by professionals and caregivers. But I just could not get them to listen.

After I had been there about an hour and had coffee and observed the layout of this particular hospital I went to the double doors to Emergency and knocked on them. A doctor was just coming out and she let me through and asked me who my loved one was. When I told her she said thank goodness as they could not communicate with mum. She showed me to the bed where my mum was, apparently in a light sleep. I sat and updated Facebook and various groups asking for prayer and waited until she stirred. Her first words to me, with a smile, were “now then.” Her welcome to her special loved ones.

I was able to chat to her, we used body language to communicate and I always had a notepad and wrote in big capitals to her. She could still read but not write things herself at that stage of her Alzheimer’s. The doctor and nurses came and they told me they had done chest X-rays and an ECG and everything seemed fine.

They were not happy releasing her though so we stayed. For hours. And hours. And hours. And meantime mum missed her Risperadone and her other lunchtime medicines. It must have been after 3pm that she started sundowning. And without her meds her sundowning was horrendous. They put the rails up on the bed to keep her in, so she simply shimmied down to the end of the bed like a monkey. My mum. Who had a bad back and bad legs and so much wrong physically was off that bed at least ten times in ten minutes. The patients and their relatives were looking at me in sympathetic horror.

I was so concerned she was going to fall and break a hip that I started walking her. Or rather she walked me, much like an owner walks a dog. She was ahead of me, dragging me by the hand, around the tiny area that is Emergency at Calvary Mater Hospital, Waratah. My legs are not good, I cannot walk for too long and cannot really stand much either and after about an hour of this the nurses got concerned. For me!

They said they would normally keep her overnight but if the carehome RN would keep an eye on her they would send her home in a Hire car. At their expense. This was accepted gladly because by then mum was thinking I was my evil witch of a sister and saying “what have you done now P&&&&.?”

Ha ha, so I knew how she felt about my sister. Brilliant. That was one thing to come out of this debacle. Once mum entered the door of her carehome she skipped, practically ran inside and sat down with her friends. The nurses and residents asked how she was and I told them she was home and safe and settled.

We can never underestimate the behaviours that can arise from pain in demented people. To be in agony, not know what it means as often our loved one has forgotten what pain is and then to be put in an ambulance and taken to an emergency ward without anyone they know? Horrendous for our loved ones.

I instructed them in future to let me know as soon as they called an ambulance as I would get a taxi there very quickly and escort her. Luckily it never happened again.

I was absolutely shattered and mum did not need me so I went home and slept most of the next day. The day after that I went to see her and took her for a coffee as it was her day for dad to visit. She looked fine, though a little drawn. And still had her ECG pad on. We had a lovely outing and we said goodbye to dad and his carer and stayed a while longer as mum loved watching the children come out of school. And she loved the tiny dogs as she used to have one. But my sister gave it away.

When I next visited mum a few days later she told me her ribs were hurting.  I pressed on them and she screamed. There you go. With her history of severe arthritis and Spondylosis of the spine it should have been the first thing they checked. But as she had no advocate, no voice, she was not heard. It made me more determined than ever to advocate for those without a voice. I certainly used my voice, and my intellect and whatever other qualities I needed to muster so that my mum got the care she needed. She trusted in my care of her. I did not let her down. Am quietly confident that my mum knew I would look after her. And I know that I did.