Post Number 37 - Have we Lost the Fight

It's been several weeks now since reducing Mark's DCA.  We stopped the Melatonin altogether as it was making him so very tired all the time and we decided it was impacting his quality of life too much. Improvements did come.  They may have been subtle improvements, but they were there.  He became stronger on his feet and I no longer walked behind him with a walker whenever he walked to the toilet.  But he did still need quite a lot of help and improvements were slow in coming.

This last week he had been complaining of pressure in his head and sometimes some sharper pain.  He also suffered a sore throat and seemed to be coming down with a cold.  Not surprising as we are in the middle of winter and have a son who attends school.  That said, none of us have really suffered with any major colds or flu's and have maintained a healthy environment throughout the colder months.  The pressure in Mark's head seemed to subside with simply a Panadol and a Cold & Flu tablet to reduce some mucus and all seemed to be well.  One Cold & Flu tablet at night also seemed to keep him comfortable and relatively pain and pressure free. 

Last Thursday we had our first appointment at the Repat Hospital to meet one of the Palliative Care Doctors.  This was simply the "get to know you" appointment to have Mark "in the system".  The doctor was wonderful, very supportive of everything we have been doing and very understanding.  Once home, I drove up the driveway in my usual manner so that Mark could enter the house via the back three steps and the ramp into the laundry.

I unloaded the car first and returned to help Mark out of the car.  He began shuffling along but after only a short distance, I could feel he was getting weaker.  I called out to his brother who was visiting from Mt Gambier to help, but even with the two of us holding him, his body just went limp and we simply could not hold him up.  Slowly we eased him onto the ground where he sat resting on his knees, the asphalt driveway cutting into his skin through the soft tracksuit pants which was his daily attire. I ran inside the house to grab my usual aids to get him up again as I had become somewhat of an expert by now on getting him back on his feet.

But this time was different.  His body was heavy and limp and there was no way we could lift him up.  I immediately rang my neighbours for help, who arrived within minutes.  Their strong young arms lifting him into the walker and then into the wheelchair and then pulling the wheelchair up the steps, we got him into the house.

Shortly after, the District Nurse arrived to give Mark a shower.  This would be the first time someone else would do this task, as he had not been keen for anyone to do this but me.  But finally he agreed to allow the nurse who had been visiting us for the past two weeks to help so that I could have a much needed break.

With Mark sitting on the toilet, I grabbed her and pulled her into the bedroom where I burst into tears as the adrenaline surging through my body subsided and the shock set in.  She hugged and comforted me and assured me she could handle things from here.  I explained that he was too weak to have a shower, so together we brought him into the bedroom so she could sponge bath him.

While she attended to his bathing, I spent most of the time on the phone to support workers, making arrangements for additional support.  But within hours Mark's condition deteriorated and he could not settle when having a laydown and stronger pain medication was not working.  It was time to call for more professional help and I called the "Advanced Care Paramedics" who specialise in Palliative Care cases.  They can administer pain medication and do not insist on transporting to hospital such as regular ambulance workers do.  By this stage, tensions had grown with Mark's family members who had come to visit.  Their opinions on what was best for Mark, not matching Mark's wishes, nor mine.  The tension and stress continued to grow as they felt helpless as I ran around making food for Mark to eat and making numerous phone calls.  Eventually the bubble burst and while Mark lay in the bedroom, tired and in pain, we argued and argued in the room next door.  The arguing progressed to Mark's bedside where he expressed his wishes to stay at home where he was receiving the best care.  He was happy at home.  Thankfully the paramedic arrived and sensing the tension in the room, he expressed that Palliative Care always respects the wishes of the patient and not the family members.  Mark was very capable of expressing himself and he made his wishes very clear.

After assessing Mark further, the paramedic advised I speak with our Palliative Care Co-ordinator.  With her on speaker phone, the paramedic and I made the decision to have him transported to hospital as there was concern of a bleed in the brain.  Mark had tried to get out of bed and couldn't and I knew that I would not be able to care for him at home if he was not mobile enough to get to the toilet, at least not with the current set of equipment in the house.

So off to Flinders Hospital he went while I paced up and down trying to work out what to do next.  I rang the Naturopath and close friends and our Palliative Care worker came and comforted me as all the trauma of the morning flowed out.  We spoke at length and she also spoke separately with Mark's family before seeing herself out.  Eventually I pulled myself together and picked up Sebastian from school, who was now happily playing at OSHC (out of school hours care).  I took my amazing boy to dinner and explained all that had happened.  But looking into his eyes, I could no longer hold back tears and again the flood-gates opened.  Sebastian simply put his arm around me, rubbed my back, as I had done to him so many times in his life and said "it’s ok Mummy".  We hugged and hugged and he gave me his strength and we enjoyed our lovely dinner together.

The following day confirmed that Mark indeed had a bleed in the brain, most commonly called a stroke and this was the cause of his pain and the sudden increase in symptoms.  We were then advised that he would transfer to the Repat Hospital, a small hospital at the end of my street, who have specialised rehabilitation areas as well as hospice and palliative care.  I was happy for this transfer as I felt he would receive better care and that I could access the hospital faster and easier.

But I was soon to realise that one hospital is much the same as the next, no matter the size.  Medications were incorrectly given and without my constant intervention, I feared the worst.  As it was now the weekend, physiotherapists were not available, nor were the main treating doctors, coordinators, rehab nurses and social workers.   So on Saturday, I decided I would get him on his feet myself.  I arranged for Sebastian to have a playdate and a sleepover, which he was totally thrilled about and I set my sights on the hospital.  To my pleasant surprise, I found Mark out of bed and sitting in a chair.  This was going to be easy I thought.  We sipped our coffees and chatted and then we began.  I turned the chair so he was facing his bed and he could grab on to the rails and helped him up.  He stood strong.  After about 20 seconds, I guided him back into the chair, gave him a rest and we went again, only this time I asked him to lift one leg up and then the other, just gently, just to see if he could.  He did it, no problem and no complaint.  I felt this was enough for one day and it was all that we needed to show that there was still a chance for mobility.

I walked out of the room for a minute to chat to a nurse and when I returned, I found Mark dosing in the chair.  Thinking that I had probably exhausted the poor man, I felt we should probably pop him back in bed and let him rest.  I asked the nurse for assistance and turned the chair so that it was better positioned.  Together we began to stand him up, but before his bottom fully left the chair, his body went stiff and started sliding off the chair, then it went completely limp. The nurse and I slowly let him slide to the floor, ensuring he did not hit anything on the way.  Nurses stood and looked on.  I looked up and said "could we please get some medical assistance....he is having a seizure".  With that, they all snapped to attention and ran off seeking assistance and equipment, with just the one nurse staying with me.  Mark's eyes were glazed over and non-responsive and I pointed this out to the nurse so as to have a witness.  Doctors came running within minutes, but by this time the seizure was over and Mark's eyes returned to normal and he was responsive again. 

But now he lay on the cold hard floor, unable to get up.  A lifting machine was brought in and he was put back in to bed while I sat in a private room with a doctor and explained what had happened and the history of the past 6 months.  She was lovely, very understanding and wanting to help.  But she was only a temporary doctor who was new to this hospital.  I was told that I would be involved in a meeting with doctors, nurses, palliative care, rehab and physio workers and we could work out a plan together, but this would have to wait until Monday as they do not work on weekends.  So we waited and waited and I double checked every medication they gave him and questioned the amount of pain medication that he was given and the amount of dexamethasone he was given.  Mistakes were made and not by me. 

So now it's Wednesday and still no meeting has taken place, physio has been minimal and Mark has not been on his feet since Saturday.  Yesterday I sat by his bedside until the doctors came and I was happy to finally meet a doctor who is willing to take responsibility for Mark and who agrees that he needs to get back on his feet, not stay bedridden in a ward full of elderly men.  He assured me that he would refer him to the rehabilitation ward where they were better equipped to handle Mark's needs.  Content that there was nothing more I could do and that things were heading in the right direction, I gave Mark a shave and cleaned him up and headed in to the city to attend College.

I parked the car and checked the time-I didn't need to rush, so I decided to do some meditation.  I sat comfortably, and using my phone, I started a 10 minute guided mediation to give me some inner strength.  I felt totally relaxed and at peace and a strange thing happened.  My heart literally heated up.  It didn't beat differently and I didn't feel hot or cold anywhere else in my body, only my heart.  I felt the warmth of all the people who are willing us to keep going, who are sending their love, who are praying for us and wishing Mark some recovery.  I sat there, eyes closed, heart hot, smiling and at peace, the odd tear running down my face.  When I arrived at College, I sat down with the feeling that I was where I was supposed to be and that everything would be alright.

My new morning routine is getting up early and having Sebastian at school by 8.30am so I can be at the hospital by 9am, ready to meet doctors and ready with questions that needed answers.  Today I wanted to know why he had not yet been relocated and when that might occur.  Doctor assured me that he would be relocating and that rehab was the best place for him, but later that morning, when I started asking more questions of nursing staff and asking why the physio was only seeing other patients, I learned that the rehab nurse had seen him yesterday and she made the decision that he was not a suitable candidate for rehab (terminal illness, seizures, high risk, not going to recover etc).  Devastated, I walked up the hallway in tears.  The doctor who had now finished his round saw me and pulled me aside.  He comforted me and assured me that he was going to push hard to get him in rehab.  We chatted at length and I told him that I had asked Mark a few days ago if he wanted to go on.  I said to Mark "do you want to keep going and fight this, or do you want to let go?" I told him that if he wanted to let go that I would support him in his decision and not push him further.  He said "No.....Push me.  I want to go on".  I quoted him to the doctor.  I understand that he will never make a full recovery, but I strongly believe there is still a chance for some mobility.  But the blood in his brain will take weeks to disperse and until this is gone, he will continue to have symptoms, but that doesn't mean they will be permanent. There is still hope and as Mark is still willing, I must keep pushing on.