"My mother's palliative care"

I have decided to share my story in the hope that my experience caring for my mother will help you to support carers who are caring for their loved ones at home. I write in hope that my story will help the dying patients in your care receive the support they deserve for a dignified ending in their final days.

I was lucky enough to have my mother live near us in Norwich, so that I could keep an eye on her, but I know that there are a lot of people who are not so privileged. We run a business at home and also have a toddler in the house, so giving full attention to caring for my mother at the time was never easy with a little one running around. My mother moved from Salisbury to be near us when she was told that her Cancer would not get any better and she did not know too many people in the area.

My mother passed away in July 2015 at home from terminal Cancer.

She was grateful for her treatment she received from the doctor at the Pricilla Bacon clinic and her support from another doctor at Prospect Medical Practice and was also very thankful for her treatment at Bartholomew Hospital in London and the Norwich Hospital over the years before she was under palliative care.

My mother first suffered with Breast Cancer ten years ago and eventually after surgery, radiotherapy and chemotherapy, she had a mastectomy, which spread to become skin and other Cancer which was incurable.

My mother was offered various treatment and given six months to a year to live, however, she passed away over two years after that diagnosis as she was an amazingly strong woman.

I won’t rewrite all the problems including the appointments that were cancelled at the last minute whilst she was being treated, not to mention her being misdiagnosed before her mastectomy… but my main reason for writing this story is to relay the palliative care that she received and to raise awareness of the lack of information, advice and support available to me as a Carer and my mum as a patient during her last 6 months with us. I would consider the problems that we experienced down to bad communication and lack of information available and would suggest better information be provided to the communities going forward. I am sure that there are many Cancer sufferers who would prefer to spend their final days at home and it would be time well spent to invest in better information provided to enable this to be an easier procedure for all involved.

My mum had various difficulties running up to the months before she died.

I can recall a time around 8 months before she died, when we called the 111 number who sent us an ambulance as she was vomiting consistently and she was passing blood badly. She was unable to take any of her pain relief drugs or eat and drink and it she was very ill and could hardly stand. She was even delirious and could not think properly at the time.

At the time of this incident, my mum was still under the care of the Norwich hospital, however, she was sent to the A&E department after calling the 111 number in the main ward and was given a drip for dehydration. After a few hours there, we were told that she had a virus and we were also consistently questioned about the risk of her having Ebola.

The Doctor who saw her at the A&E department advised me to take her home and to give her paracetamol. I was appalled as you can imagine as she was not being helped with any of her symptoms and was very ill unable to walk and was told to go home!

I even called the doctor to see my mother’s blood from her bowels in the toilet and she said it was down to a virus and to give her paracetamol! Luckily for us, we were sitting outside the radiology department where my mother was being sick outside in the hallway, when a kind nurse grabbed a wheel chair and took us to the Oncology department.

After waiting for a few hours in the Oncology department, a Doctor finally saw my mother and I explained that she was not getting any medicine down her and that she was weak and ill and needed an injection for pain or something to help her with the symptoms. The Doctor suggested a syringe drive to help her get the medicine down her, which you would think could’ve been suggested by the A&E department in the first instance.

My mother was amazingly strong and could handle pain more than anyone I know and she eventually got over her diagnosed “virus”, which was clearly an infection and needed treating. When my mother was based in London and during her treatment at Barts, an infection was taken very seriously and she was admitted to hospital at times to get over the symptoms. I felt that this situation was not taken seriously at the Norwich hospital and that she was dismissed as being infectious and that the hospital could not help her.

As you can imagine, I was mortified by the treatment that we received and then started to try and understand how we would handle things better as her condition worsened.

I made an appointment to see her GP practice doctor and made several phone calls to find out what help was available in terms of support for terminally ill Cancer patients. I asked the doctor about Macmillan as we were told over the phone by Macmillan to be referred by our GP for a nurse. My initial thought was for my mother to have a nurse or support worker come to visit to talk to her about her feelings and to support her at home and coming to terms with actually dying.

Unfortunately, we were advised by our GP that there was no Macmillan nurse available or Marie Currie help supporting Cancer patients in the area and the GP suggested that we contact her as a first point of contact should we have any problems. The doctor did advise not to go through the hospital again as she agreed that it would be a waste of time for us to be treated there with my mother’s condition being so serious.

We were told to call the District nurse if there were any problems and to go through the 111 number again should we need to call out of GP hours.

My mother was a sensible woman and also suffered pain in her back as her condition worsened, she asked for a hospital bed early, which was a great help as it arrived before she was too ill. I have since heard horrific stories about people receiving them on the day that they die or never receiving the bed or equipment needed for their time.

She was later discharged from the care of the hospital and taken under a doctors care at the Pricilla Bacon centre.  We went to see the doctor a few times as her condition worsened over the months and was advised to come to the Monday morning clinic where she would see other Cancer patients and see the Dr and nurse should she need to.

During those last months, my mother’s skin cancer on her chest area worsened and she was actually buying her own dressings to cover the seeping area for coverage. She did have the wound changed during her visits to the Pricilla Bacon centre, however, they were never regular appointments and she was free to go when she felt like it. There were times when my mother felt too unwell to go to the Monday clinic and she was too weak to change her own dressings.

I started to be more proactive in helping her change dressings six months before her death. Her dressings were changed at least twice a day and we started to investigate on how to get the dressings through our GP as we were unable to buy larger dressings over the counter as the wound worsened.

We started to order them from our GP on prescription and eventually a district nurse was arranged to for weekly visits to change my mother’s dressing which started a couple of months before she died. I have to admit that sometimes the nurse didn’t turn up and I ended up changing her dressing as she couldn’t really wait all day as the wound did smell and was uncomfortable. We sometimes ended up cancelling the nurse as there was no point in her turning up late once I had already changed the dressing twice that day.

My mother started feeling more unwell and was still managing her own drugs and ordering them from the GP. She did see Dr Dow a few times regarding what medicine she was on to manage things, however, it did feel like the communication between the Pricilla Bacon centre in the doctors office and the GP practice was not fully relayed. As I say, my mother was so strong right to the end that she kept her head together and knew her medicine well and wrote down what she needed and started to ask me for help too.

Just after my mother’s 64th birthday, she decided to go on to the Syringe Drive for more controlled medication as her condition worsened.

This did cause a lot of problems as we all experience teething problems with new things and we did have to send out the district nurse several times, etc. As we were getting used to the idea of this, my mother was told by her GP that my mother was responsible for ordering her medication needed for the syringe drive. This really upset my mother as there were sometimes up to five district nurses turning up to change the syringe drive in at one time time including student nurses, etc. She felt as if she was basically ‘told off’ by the doctor to sort her own medicine out, which to me, is unreasonable as she was dying.

Obviously, I took it in my own stride to manage this and was advised by the GP to do this online… I really don’t understand how Doctors expect people to have time to do this online when you are caring for someone full time and with a toddler at home… Anyway, what can you do but persist!

We managed her drugs but as my mother started wandering around a bit, I decided to consult the doctor for advice as I must admit, he never actually set me aside, neither did the gp practice doctor to explain how the final days would be… I asked questions but was told that thing would get worse and to look out for falls, etc.

The last time  the doctor at Pricilla Bacon clinic saw my mother, the doctor said that she had ‘Palma’ and was nearing the end now. The doctor called me a couple of times to see how she was, but I felt like I had to research my own information on what to do and how to deal with the final days myself.

After my calls to the doctor at pre-stressing  my concern for my mother’s well being, the doctor suggested a night carer to help me to have time off caring for her 24 hours a day.

At first, the night carers did not have anything to do as my mother slept through the night and to be honest, so did most of the carers that came to look after her! After the first week, my mother become restless and that continued for the last four weeks leading up to her death. There were times when the night carers insisted that my mother sleep, even though she could not and it made my mother feel anxious and upset.

I started asking the nurses to come through a door that did not disturb my mother as she became anxious at the thought of having up to 4 nurses arriving at the same time to change her syringe drive. We were offered help with a day carer to help her with washing and changing her dressing, but that never really panned out as they did not show up early enough to relieve me and in time for my mother to be washed and dressed before I could take my son to nursery. There was never a contact number to call or a certain time that they would show up and sometimes the carers would put my mother’s clothes on the wrong way and were not sure how to change her dressings. I found myself having to show all the nurses how to change her dressings too as the infected area was around all of her chest area and around her back, so a large area to cover with dressings.

Eventually, we were assessed after not being able to bath my mother anymore as she was too weak to get out of the bath. This procedure was not simple as there never seems to be a straight answer on who to approach for this kind of help.

Some of the district nurses were more helpful than others and started to give me the right information on who to call. We were given a chair for her to sit in to wash and different pillows to make her comfortable as she has bed sores and was uncomfortable. I insisted on an inhaler for her and we were told that she could not be prescribed any other breathing apparatus to help her breath better at home.

We never received any calls or appointments from the Pricilla Bacon centre three weeks to her death and we did think that perhaps the doctor would be able to make a home visit to check on things as my mother did think highly of the doctor and knew they had a calm presence during her time of need.

The last time we saw the doctor my mother was when she had a fall and I took her to the day centre on the Monday to be checked when the doctor did say my mum was very bad and would probably not have much longer to live.

We did have a representative come and visit to see how my mother was, but it felt like they were just checking on whether my mother would wake up rather than care for supporting her or give me valuable advice I needed.

I asked questions about what to do when she dies and things that were running through my mind that I needed to know as her primary carer. The GP practice doctor made a couple of visits too but never gave me full information on what to expect during these final days.

As you can imagine, I no longer had time to spend with my family and child, because of the care needed for my mother and I could not leave her alone for a minute as she did have one fall which was awful and after a visit to the centre, the doctor knew she was going to die soon as she started to lose her mind a bit by then.

I just wish that someone at the Priscilla Bacon centre would’ve seen me whilst my mother was not with me to talk to me about things, more as I did feel lost and alone during this time and wished I could do more.

My mother being restless was becoming more dangerous as she was weak and was at risk of falling. By then she had two syringe drives and needed someone to hold both syringes as she preferred to walk around rather than rest.

My mother was on calming tablets as well as her syringe drive and I tried to manage the amount they were putting in the syringe to make my mother comfortable. To be honest, my mother was still fully aware of what was going on and how she felt so the decision to upping any doses was always her final decision.

The doctor prescribed her a sleeping tablet which in the end did make her fall asleep and she did not wake up again. My brother was with my mother and feel asleep by her side when she died. The night carer at the time was a young woman and was upset by my mother’s death and to be perfectly honest, probably not prepared for her dying as she was shocked and upset.

I am very happy that my mother died at home peacefully, however, I do feel that certain information could have been better administered during her final days.

I have spoken to many people who have had the support of Macmillan and Marie Currie who are professional carers rather than contractors who do not know how to deal with palliative care.

From my personal experience, I would recommend the following to enable others to have a more dignified time at home during their final days:

• Information given to the patient and carer on charities available for support in Palliative care

• GPs being made aware of the care available out there to advise patients with better information on knowing they are under Palliative care

• GPs being more understanding to patients dying and not assuming that they are OK to manage their own drugs

• Information on who to contact should there be any emergencies during the night and where to go and who to call as a point of contact. A leaflet of some description should be produced to help families deal with the pressures involved.

• Carers support network, for carers to be set aside rather than have to look on the internet on what to expect in their family members final days leading up to death.

• Where to go if you need a new bed, who to contact for a caring assistance and any information relating to the help out there.

• A point of contact to call rather than have to go round the houses and get too many people turn up at the same time.

• Carers who are sent to the home during palliative care to be qualified and trained to deal with dying patients

• A&E departments to be more understanding to Cancer patients and to refer them to the Oncology department if they are unable to assist with symptoms or infections.

• Perhaps if more information was provided to the systems used, like when you call 111 or the A&E department relating to Cancer patients, it might make a difference to helping palliative patients during their suffering.

• More communication between the teams would be helpful too as there were often times when we had more than two groups of nurses or carers show up in one day due to lack of communication.

Our family are grateful for the NHS and my mother’s care but I do believe that through better communication through the departments and a bit of empathy to dying patients, perhaps more people will choose to die at home and that Norwich hospitals and hospices will not be filled up, which I imagine would be a positive result.