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Hearing about others' experiences can be helpful when dealing with death and bereavement. Do you have a personal experience that you'd feel comfortable sharing with the campaign? If so, let us know...
My husband was diagnosed in 2005 with MND. We both faced up to the very hard decisions of how he wanted his care and death etc to be. Hardest thing I have ever faced in my life, but SO GLAD we did.
He slowly lost the use of his legs, arms, speech and swallowing. He was on a NIPPV (non invasive ventilation) 24 hours a day, had a PEG and a mini trachaeostomy for me to suction his chest up to 50 times per day, but he still wanted to live and be part of our family.
I looked after him on my own 24 hours per day and would gladly do so again. He passed away in July 2009. I am still angry at the lack of support he got! In fact, I went to Parliament and spoke to MPs who were on a group of ''Improving specialist palliative care''.
We had carers initially just to wash him and get him up, they were very nice but frightened of all his equipment so I had to assist them. It got that we were waiting for them so I made the decision that I would take over and did, very successfully.
1. We were given a hoist that was worse than useless, in fact the carers would not use it as the wheels kept splaying out even when my husband was hoisted. I kept complaining to Physio, OT Dept ( OT never came out to see us even though I kept requesting help) the district nurse and the MND specialist nurse.....all to no avail.
I was about to buy one myself, having asked our daughter (who is a Critical Care Sister) to find out where and which one to purchase - this was after 12 weeks with this dodgy hoist! The physio then stepped in and got us a brilliant hoist which was such a Godsend to both myself and my dear husband. My point is, if he had been in a nursing home they would not have put up with a hoist that was useless!
2. The suction machine kept breaking down and I would have to ring the out of hours nurses to try and find me one, or else we had to go back into hospital... at what cost to the NHS? After 12 months of this, the physio finally got us to trial a suction machine, which was brilliant. Finally, after a year of complaining, we got what he needed. My point again is why should I have had to keep on at everyone, numerous phone calls etc, when I honestly didn't really have the time and sometimes the energy! I was also told at one point that my husband was a guinea-pig! You can imagine how incensed I was at this, my darling husband was a human being and my husband, not a guinea pig!
During the time when his suction machine kept breaking down, I had to pay £150 to have one couriered to us as no one wanted to know. On that occasion I made ten phone calls but everyone kept passing the buck.
3. The reason I took over my husband's care was due to an incident at the hospital. My husband was hoisted onto a bedpan and left on there for nearly two hours. I kept ringing the bell as he was in agony, again to no avail, so I got him off myself and made the decision then that if they couldn't provide care and dignity then I would!
4. On one occasion his PEG came adrift. I sought specialist advice and was told to take spare tube and go by ambulance to nearest Accident Unit and tell them it needed to be replaced within 90 mins! I did all this and told the Sister in charge but we were ignored for four hours, by which time it was too late. All my husband's drugs, nutrition and fluids were given by his PEG so obviously he could have nothing! We were eventually seen by a lovely consultant 11 hours later. He agreed with our daughter that my husband could come home for weekend as long as my daughter could give him his drugs by injection and look after his intravenous saline drip. He was then admitted to another hospital on the Monday. I stayed with him for the week, as he was so traumatised by all the events. I looked after him in hospital and did all his care, but they wouldn't even let me buy a cup of tea from the ward, I had to go to the main concourse and get drinks and food -I lived on cheese rolls all week!
He finally had his new PEG done and next day we could come home. Great but... they would not give us paramedics so I had to be in charge on the ambulance as the personnel could not suction his chest etc. To cut a long story short, he nearly died on the side of the A14 as due to the rocking and rolling of the vehicle his ventilator came undone, the ambulance was so noisy you could not hear the alarm going off, it was only when he was looking at me in sheer desperation I screamed for ambulance to stop, found out the problem, rectified it and calmed him down. We then continued on our way, only for us to be told we were stopping for petrol! I couldn''t believe it but what could I do, all we wanted was to get home to safety. When I complained I was just brushed off and I was running out of energy for the fight, I just wanted my husband to have a comfortable rest of life.