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.

 

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I Got That From Her

On This Day five years ago G and my son and I had a great shop at our local Vinnies in Swansea. We stocked up on lots of clothes for Mum as we knew she would need a lot for when she went to Respite in the Care Home. She needed warm clothing, nightgowns and dressing gowns and shoes and slippers.

She loved cardigans, indeed one day a gorgeous softest silver grey boucle cardigan arrived for me from eBay UK and when mum saw it she beamed cheekily and grabbed it and said its mine. Of course I gave it to her instantly. As she had with me as an adult. She would literally give me the clothing off her back. Come to think of it I got that from her as I do that too!!

Shopping was pretty exhausting as we trotted off to Coles to stock up on food for the folks. Mum had eaten us all out of house and home again! When I got back I left the youngsters to unpack and escaped to my little retreat way downstairs where I read and knitted each afternoon after getting everything for my parents organised in the morning. I loved it down there though it was starting to get very nippy.

We brightened and personalised the empty space by rearranging the furniture and adding a cube bookcase, a big faux leather storage ottoman and some affirmation plaques. Very much needed after what we had been through for the last year. G has them now in her flat, I no longer need them as I am on the other side of everything now.

On This Day: A Very Long Time

Four years ago today Angela the Calvary care worker and myself took dad to see a great care hostel near us in Wallsend. It was Jesmond Grove,  a short walk away and  run by Anglicare.

He liked it and did not get upset or anxious but I feared his lack of higher functioning since the stroke would stop him deciding to go in there. It had a personal recommendation from my angel Norma, my parent’s then neighbour.

So it would likely be up to his new guardian. We were having a new Guardianship Tribunal on 9th may. That was two semi formal and stressful legal hearings in less than a month.

Wonder if that is why I was getting nightmares? In both cases two people who had caused me enormous trauma were present and I had not seen either of them for a very long time.

Nothing Came Up

On This Day four years ago I dressed myself appropriately for an appointment with Anglicare Jesmond Grove. It was for a possible bed for my dad who was a danger to himself at home.

I walked up the back streets to the care home. It was only about ten minutes walk from our flat at the time. It was very nicely landscaped and looked to be well run. I also was fortunate enough to have a personal recommendation from our lovely neighbour Norma whose mother had lived there for many years. I was inspecting the secure dementia area.

I was quite pleased with it but unfortunately nothing came up for dad.  And we could not wait. He was unsafe, carrying bottles of gas bigger than himself. Getting up onto the roof. All with Hemiplegia. Unbelievable. The neighbours were at their wits ends!

So the search was on for another home suitable for dad.

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Pre Admission Of Mum To Permanent Care

My brother was working away God knows where and my sister was, is, and always shall be a complete witch and had disappeared. So it was up to me to get everything ready for Mum’s admission to Permanent Secure Care. All within two weeks in late June 2013.

Me, the one so traumatised that I could not even fill in paperwork to arrange my own divorce or financial settlement!  Had to do realms of paperwork, with the my nerve damage in my hands!

*So I had to go for a long appointment the result of which is I basically read and signed masses of papers which literally signed the rest of my mother’s life away. The life that until dad’s stroke I had no say in whatsoever. It was such a huge shock to the system to be the one in charge. While making sure one’s parent’s thought they were of course. It was and still is like walking a tight rope.

*Tried to explain legalities and costs to dad. That did not go as planned.

*Organised transfer of her file her file from her GP to the facility.

*Same with her Webster pack, that had to be cancelled and all meds bagged up for the care home.

*Packed most of her clothes without mum suspecting anything. Had to say they were being washed, then took them with me to the facility when I did paperwork and while there also organised labelling of the clothes.

*Bought her lots of new clothes and underwear and nighties.

All the above somehow accomplished without a car or taxis. I just slogged it out over the hills to the bus stop and caught various buses. Had lots of great coffees at various places along the way. Carers need to take time out for themselves even when doing chores such as these! Could not have done it without my son and his friend gen, eternal gratitude and love to them both.

 

 

 

 

 

 

 

The Worst Day Of My Life So Far

The day I put my mother into permanent care was so traumatic for both Chris and myself that it has taken me over four years to write about it. Dad, who has bad rage issues due to stroke damage, had been beyond impossible for over five days. He had been on a violent, paranoid, psychotic bender triggered by my informing him of the cost of my mum’s care home bond. He had told me she was NOT worth the amount of money involved. I had our lovely neighbour Norma over and she could not convince him either.

We suspected some dementia in dad then but it was his rage and paranoia that were the things we were most afraid of. And had no escape from. And my unrelenting honesty and attention to detail and doing the right thing by my mother caused enormous strain between us over the bond.

The day started as had the past few except that Christopher’s friend Genevieve had returned to Sydney that morning. When I came downstairs and into the kitchen Helen the AIN was there. She had already showered and dressed mum. Dad pulled mum up and said come on we are are getting away from Kathleen. And he screamed at me. Poor mum, being deaf, had no idea what was going on and was picking up our body language. She shrugged him aside and said she wanted to sit with Helen and me.

Dad ran around the room in a strange off balance way. I was terrified he was going to fall. Even more terrified he was going to punch me. Meanwhile I was presenting my neutral face and non threatening body language. Trying not to provoke anything but being ever aware of where dad was and what he was doing. Eventually he ran off down the steep driveway. I saw him running down the hill like a crazed leprechaun.

While he was out I rang the GP as I was concerned he was going to have another stroke. At some stage Helen rang work and told them what was going on and that she was frightened to leave mum and I with dad alone. They told her to call the police if necessary but that she was to leave and go to her next job. Helen left, sobbing and telling me she was so very sorry.

The GP rang dad after he got back and tried to talk to him. Dad shouted at him and hung up. He came storming through the door from the garage, slamming open the door so hard it knocked a large photo off the wall and causing a dent in the plaster.

He launched himself at me as I was sitting reading at the dining room table. He screamed at me that Ye mean nothing to me. All three of Ye. Ye are nothing to me. Get out. Get out now.

I quietly got up from the table. Gently putting my hands out to him and said. Dad what do you mean? I am your daughter. He said then do your job. I said I am doing my job. My main job is to make sure mum is safe. And that is why she is going into care today and that I am staying until that happened.

He screamed at me. Ran over to mum and tried to drag her into the garage away from me. She kept saying stop it Tom. And sat down again. So he screamed at her that she was going to be put away today. Obviously she was not supposed to be told as she would be frightened and could not retain the information anyway. She started screaming. And screaming. And screaming. I will never forget it as long as I live.

Dad then ran away again. I got on the phone to the Public Guardian D who was in charge of my mother. She had already left her office to try to reason with dad here in his home. Christopher was sitting on the edge of mum’s chair, holding his grandma in his arms and rocking her like a baby until she stopped sobbing.

Meantime Tony from Belmont Hire Cars arrived. He was due to pick us up at ten. So we could settle mum before lunch. I could not get past dad who was patrolling the garage. I was not sure what would happen if I entered it. Eventually I went out the unused front doors and hung over the balcony looking at the sea. Tony sauntered up and joined me. He is ex military. A big fit guy and was concerned leaving me alone with dad. He stayed as long as he could but had another job to get to eventually. He had told me before several times that I was a strong woman. I did not see it nor feel it. When he left he gave me his card. We hugged. He said to ring him if I ever needed to talk.

D arrived and was sitting with dad in the garage talking. It was my parents favourite place to sit unobserved while they viewed the ocean right up to Nelson Bay some days. I had the night before asked Chris to come downstairs to be there when D came. To help mum and I get ready as well for the 10am am pickup. There was so much to do and only us two to do it. Unfortunately I found out later dad had blamed Chris for the call to the GP. He thought Chris was trying to have him put away as well.

Christopher and I popped into the garage to see if we could help and as we walked in dad started on him. Shouting here comes the idiot. And more. A lot more. Poor Chris was just trying to help his grandma. Who he had only seen twice in ten years due to his own poor health, which neither of my parents recalled then. Well Chris had taken so much abuse from his father I was not going to let him be spoken to like that. Not while I had breath in my body. I quietly said. Dad. Please do not call my son an idiot. He is trying to help. Of course dad went totally nuts then which was why D asked us to leave.

I said I would be next door with mum. Dad taunted Christopher all the way out of the garage. It was awful. Though apparently he did it all the time when I did not see it. Reminiscent of Christopher’s father. Eventually D came back into the lounge room. I turned around and I saw her recoil at the anguish written so clearly on my face. I then saw her face harden, as she had to, to be able to deal with her job. She asked me to call Tony back and get the hire car out. I was in such a state all I could say was that he had another job to go to. I could not think. Could not reason. Could not move. I heard her voice coaxing me gently. Saying she thought it would be fine.  So I walked over to the phone and rang him. He said it would be an hour.

Meantime I made morning tea. Went upstairs and tidied up a bit. Mum was sitting on the balcony in the sun for the last time. Watching and absorbing the incredible natural beauty of that place. I saw Tony arrive and came downstairs. I went into the garage and said I am not going with you dad. This is your responsibility. I am not having you saying to me from now on that I put my mother away. I won’t do it. And I went and sat with mum.

D came in again and sat down opposite me. I was annoyed with her by then. She had had words with my son earlier. Telling him he could leave if he did not like the way his grand father treated him. That it was not his home it was his grandads. She never got that I had been Christopher’s carer from when he was three months old. I had protected him until a few a months previously from violent men. And I had let him down by trying to get my mum to safety. If he went I would be going. She never understood that until months later.

She said that dad needed me. He could not do this by himself. I said he would have to. Dad then came to get mum. Mum shook his hand off and turned to me. And said Kathleen, my Beauty, will you come with me? I said of course mum, of course I will.

I am sobbing as I write this. I have never addressed the trauma of that day. I cannot even put it on a scale of trauma. I adored my mum. I felt I had let her down in not discovering her Alzheimer’s sooner. I was determined to make the rest of her life count. See that she was safe and free. From dad especially. And his rage.

I grabbed mum’s shoes as she had slippers on, and my handbag and held her hand and we walked down to the hire car together. D had already put her things in the boot of the car. Mum had her handbag and the last pretty cardigan on that she had ever knitted. She had forgotten how to knit at least ten years before. Dad got into the front seat. We were off towards our new normal.

As the car pulled away from mum’s last home we both looked across to Norma’s house. All the windows were curtained and nobody was in sight. The whole street looked deserted. Public Guardian D was still there. (She said afterwards she should have gone as well)

Once out of Swansea my mum exclaimed that she was not dressed properly as she had her slippers on. I had moved so fast from when mum had asked me to go with her as I did not want her getting upset again. Of course my brave gentle yet feisty mother surprised us all with her strength and grace.

I produced her pretty cream dress shoes with a flourish and she smiled at me and said “now then”. Her little expression to us when happy to see us or pleased with us as children. We chatted, or rather mum chatted and I agreed or smiled at what she was saying during the journey. Meanwhile absolutely dreading what was ahead of us. A month ago she had gone to respite there and I can still hear her crying like a preschooler as they walked, almost dragged her away from us. “Do not leave me here without my parents. Mummy. Daddy do not leave me.” It was awful. Gut wrenchingly so especially as dad was crying. Sobbing.

Once we were on the Freeway the trip was smooth and before too long we were back at the care home. We informed them we were there and the gorgeous RN L took us all to the house where mum had spent the two weeks in respite. When we walked in the residents were still seated after their lunch. Mum saw a few of the people she knew and they remembered her too. She sat down at the table with them. Quietly put her head in her hands and wept. “Steady on girl”. “Enough of that Pat” and lots of other caring encouraging words were uttered. Nobody moved from their chairs but they patted her or reached towards her. Her special friend Audrey especially encouraged her to be strong. It was incredible.

They put a plate with a roast meal on it in front of mum and the RN said it would be a good time to go. Mum saw us and realised. Pushed her chair back and in her best Greer Garson Mrs Miniver voice said that she would see us to the door. She hugged me and stroked my grey hair and said she loved me. Called me her Beauty again. Then she turned to dad who was sobbing. She put her arms around him and said “ It is alright Tom. It’s not your fault. I love you”. And she comforted him.

I escaped through the secure door leaving dad behind. I was sobbing. Tony the owner of the hire car was waiting outside and helped me to the car and then he helped dad. We drove home in near silence, with just the sound of my muffled weeping from the back seat