My Mum's Story In Her Memory x

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1

This is the first time I feel ready to write about this. I lost my beautiful and loving mum on 15th June 2015. She had been suffering, but coping brilliantly and independently, with Parkinson's for about 18 years. My mother was overweight (size 22). Largely due to binging on naughty treats, and inactivity because of the disease. Looking back I realise she had some degree of depression given the way she was living. Although she never complained and insisted she loved the mess (we would get scolded if we cleared up too much as she was fiercely independent).

In January 2014 mum was hospitalised with pneumonia. She also developed sepsis and influenza b. It was really touch and go and was on a ventilator on and off for 2 weeks. A very scary and horrendous time for my mum and for me and my two brothers. However she bounced back and amazed everyone with her recovery.

We weren't so lucky in 2015.... The year started with us losing our Nanny (my mums mum) in January 2015. She was 91, and we were happy for her. It was peaceful and it gave my mum some relief as Nanny was really starting to suffer with dementia.

Shortly after that Mum had some unusual post menopausal bleeding. She quickly got it looked at and it was decided that there were some cancerous cells and a hysterectomy was advised. Early May, shortly after my Mums 64th Birthday,Mum had the operation. She stayed in hospital for maybe 4 days. We had a slight hiccup during one night where mum said she was rushed for a ct scan at 1am because they weren't happy with her oxygen levels. The scan revealed some clotting so mum was prescribed some thinners (not unusual after long surgeries). Mum was on the 5th of the 6th week before she was told she would be able to start driving, become a little more active. I spoke to my mum on the morning of 15th June when she said she was feeling a little breathless but she assured me it was usual to feel like that after her Parkinson's meds and was quite normal. How I wished I had urged her to call a doctor. I didn't notice her sounding breathless and she quickly dismissed it. That evening, some time between 8 and 9pm, my wonderful mum dropped dead, at her home and on her own. Post mortem revealed evidence of a pulmonary embolism on her leg. The blood clot killed her and Our lives will never be the same... 

The reason for me sharing this is the questions I want to raise. Perfectly normal although I realise it won't change anything but it could change someone you know's life? If the hospital had a better understanding of Parkinson's disease and the inactivity it causes, would Mum have been been more closely monitored? Would a stronger form of blood thinner have been used? Back in 2014 when mum was hospitalised due to pneumonia, my brothers and I were concerned that the doctors and nurses were unsure as to how to administer her Parkinson's meds. She didn't receive them for 2 days. My brothers and I picked up on this and contacted her neurologist who was very concerned and made contact with the hospital regarding how to make her drugs soluble so that they could be administered through a tube. Mum later said that us intervening had saved her life. So again, is Parkinson's so specialised that perhaps the disease is not fully understood? A very important point that came out of that hospital stint was that we didn't have a drug list from Mum as to what she would take and when. She had since gave us a sheet just in case, there were some 32 tablets a day she needed to take. Whilst I said raising these questions isn't going to change the outcome for us, I feel obliged to share our heartbreaking story with you. It's my duty if it makes a difference and is read by the right person xx

2

Reading that your Mum was fiercely independent made me giggle - that is how I used to describe my Mum as she lived with her PD! My Mum also bounced back from touch and go situations. I was sad to read your story - but  you are not alone in having difficult times connected with PD and hospitals!! My Mum had issues with meds in Hopsital with staff who didn't seem aware of the specific needs of PD patients...that was in 2010 and PUK is constantly campigning to improve this....

Since my Mum died (aged 91, in 2013) I have done what I can to support PUK to highlight some of the issues you have written about. I always have said to do something positive now will help to bring good out of some very negative experiences. The PUK campaigns section and the Research Network have given me a way to share stories like yours to help draw attention to what happens when things go wrong. It helps me to know that by sharing my Mum's story others may be helped - and it certainly helps me!!

3

 

Also to point out Keld what Emma_uk23 has pointed out that the hospitals are not fully aware of the need of the person with parkinsons in having a continuity of there meds and at the same time each day, not when they decide to administer them when it's time for the drugs nurse to bring them on her rounds! It's surprising how many on this forum have commented on this.

My thoughts are with you both and your families.

Sheffy x

4

Thank you both for taking the time to respond.  Whilst I understand that it is very difficult for the hospitals to fully understand the disease, and im sure, many other diseases, it is so heartbreakingly frustrating to know that recovery is affected if this is not stayed on top of.  My Mum was also a very private person, so it did not help that, at that time, we did not have a drug list, and had to go by with the neurologist told us (it transpired that Mum was taking more than she needed to and used to self diagnose what she should be taking).

I seek the little comfort I can that when Mum did die very suddenly and unexpectedly the following year from a blood clot , that it happened quickly and hopefully without much pain.  She may not have even known what was happening.  All because Mum had the operation for the hysterectomy (because of the cancerous cells), and inactivity (due to the parkinsons).  So so unfortunate and desperately sad.  I miss her every single waking moment, it just seems to get harder at the moment x

5

PUK is working hard to help ensure that hospitals understand PD. I was always shocked that going to hospital led to medication issues and problems...you would think that in a hospital there would be good awareness of different diseases - and that if they didn't know about a disease they would make sure they found out about it! I I find it hard to understand that hospitals don't always consult a 'Parkinson's nurse' when a patient with PD is admitted.

The new campaign about PD and family acting as carers in hospital, to support patients with PD is a good example of what PUK is trying to do.

My Mum died 2 years ago and I benefited from calling the helpline to talk to someone who understood Parkinson's . Cruse Bereavement Care is also a good charity to contact to get support from a listening ear to help when things are hard to cope with. I used both services to help me through.

Take care,

Keld