GONE BUT NOT FORGOTTEN

Hello all, I have posted a blog about Glioblastoma Multiforme in which i explained i didnt know what to expect towards the end....I was caring for my sons dad who had this type of cancer,with sadness he passed away last friday 17.7.09...he passed very peacefully at home...Now although my rant that coming next will not bring him back it will make me feel a whole lot better so ill say sorry now.. DISTRICT NURSE I have single handedly been caring for my sons dad since march 2009 i have no grummbles about that,the care he got from elsewhere is what made me so angry,firstly his feet and legs grew so swollen he was unable to walk or stand,this was due to the high amounts of steriods he was taking i understand that now but didnt at the time...the district nurse who was there to help him in recovery from this pitted odema was very matter of fact about it,now while i understand to her its 'just another paitent' to me this was somebody i have known for over 25 years and i wanted the best treatment for him,she came once aweek and every vist stated that "it was showing signs of improvement" now she should know what the word improvement means surely?when she first started to call his legs and feet were swollen but he could still walk,after 3 weeks of her calling he was left housebound!and as the odema had taken control over the whole right leg right up to the thigh and half of his left,she called that an improvement!!!! they were leaking and needed dressing,i was left the dressed and clean these wounds,i noted down in her log every time i dressed and cleaned his feet and legs,even noted that he had sores on his right foot that was leaking green pus and was now 1cm instead of the pin prick size the week before!she still insisted that they were healing!!...i voiced my concerns about his chest as he seemed alittle chesty,she said he was fine no mention of informing his doctor..In may this year he was admitted to hospital for a chest infection,he stayed there for over 2 weeks and was told he had phenmonia!last monday i got a note left for me saying that they would only be calling once a week now...a NOTE!!!! even though his legs and feet were swelling again and sores were appearing.. HIS GP Doctors normally are there to help people,in my sons dad case this was not the case,every time i called the doctor out for whatever reason he blamed "his condition" if i called him out for his legs and feet it was his condition,if i called him out for his chest it was his condition,some times he wouldnt come out at all and would ring! prescriptions i ordered vanished when i went to collect them and i would end up with 2 lots as the receptionist would get another script done,no one to this day knows who took them to fill and deliver to me....i have had this since march and over a period of time it gets alittle hard to bare...last thursday i called the doctor out for a home vist as he was sleeping rather alot and was complaining about headaches,the night before we were both given tamiflu tablets to take as a precaution as i had flu symptoms,we took a dose that night as another thursday morning,these drugs gave me the worst headache i have ever had,so i put his headache down to the tamiflu and thought no more about it....the doctor rung to ask if i really needed him to come out! i told him i did,he arrived some time after his call,and found my sons dad sleeping,he tried to listen to his chest and mummbled that it was difficult to listen to his chest as he was laying down and that we should sit him up!i told the doctor of the headache and the fact that he had been asleep most of the day,he did the knuckle in the breast bone 3 times to wake him up but failed too,i then tried but failed too...the doctor then told me to increase his steriods and only give him half his pain relife as he thought this was making him drowsy and left...The carers arrived some 3 hours later with a RGN who promptly told me he was in a coma and it didnt look good!she went on to ring his doctor who told her "he thought he was in a coma"i asked her after her call to him why he had NOT told me this?she said he didnt want to worry me!!!!! early hours of friday morning he passed away.... THE OT'S I know they are there to help with equipment etc and to start with they did,he got a wheelchair a glider commode and a banana board,from his physio!she unlike many other people that should of helped him was brilliant to him...he had his wheelchair in total around 17 weeks which was great as he was house bound...wouldve been greater still if he ramp got here too,that ramp took a total of 15 weeks to get here!!my brother-in-law made him a makeshift one in the mean time only when that rotted away and a couple of rude (on my part)phone calls did i get a ramp for him...all the time he had his wheelchair the seating wasnt suitable i informed the ots and they said they would get a better fitting one...i am still waiting for that!!!!because his chair was fitted to him whilst he slept he got the wrong size for him,the sores he incurred on his elbow using it still make me wince... THE CARERS These were put in place before he was allowed out of hospital in may, 4 vists a day,at the time i thought this was too many vists,but the girls (main carers from this company for him)were lovely,only the times they were off or sick were the times we had the ones with attitudes of cant be bothered!!bringing sticky things in on their feet staining the carpets...or not staying the required amount of time...morning call...1 hour 30mins...they managed 15 minutes!!!! i know care compaines get alot of grief and i can full understand why now...everyday he should of been given 4 hours and 30 mins care,he got most days 2 hours!!! yes there wasnt alot for them to do as foolishly i did most things but my main problem is they still got paid for the work they didnt do!!! i have a friend who is a carer and she said some times you have to shave off a few minutes here and there to make it to your nexr call (no care company actually notes down the time it takes a carer to go from A to B)so hence the fastness of care...but all said and done it wasnt a particularly bad company and they tried their best...at times...thursday night last week up until midnight i had 2 carers here for him,after midnight 1....i helped him to look after my sons dad not a problem,when he needed cleaning up i did it,simply because i didnt wear gloves,i know they have to wear them for their protection,but by the time he got them on i had finshed cleaning him up!then the worrying thing happened i was cleaning him up when i notice no breath sounds and a weak heart beat,i told the carer this and he just looked at me! i then went on to tell him that his heart had stopped,i went on to check all possible outlets for this while he dons on his gloves to check for a pulse in his neck,it was me who told him that he had passed away,he then said i think your right and stood there...a few minutes later he called his boss to let them know,she arrived and rung the out of hours doctor to attend...he gave him a wash i dried him and we laid him to rest in his bed which is in the living room,after the doctor had left they asked if i wanted thm to stay,i declined and they left....i had 2 hours with him to say my goodbyes which was a precious time for me.... ALL IN ALL I feel that as a terminally ill man who never fully knew how long he had left,he was treated terribly by all the professions that shouldve made it so much easier for him and myself,until he went into hospital i didnt know he was intitled to carers etc i was struggling to look after him with no equipment, i didnt know about the help thats out there for people with terminal cancer i never got told even though i asked many people,the after care from addenbrooks was non existance i rung a few times but always got the answer maching but no replies,his speech therapist got everything moving for me,she told me that the doctor shouldve been calling once a week,the DNs shouldve dealt with his bedsores legs and feet alot better and OT shouldve made sure he had everything he needed to make his time left bearable...but it either didnt arrive at all or arrived to late,just today i had a delivery fron the chemist of the things i ordered from the doctor over a week ago!! OUR SON In my orignal post i stated my sons dad didnt want him to know and that was the case right up until last thursday night,we explained to him why his dad didnt want him to know and why i had stopped him from going out with friends etc to my amazement he understood and was not upset by our deception to him,he knew his dad was very ill and he would never get any better,e saw the hospital bed the hoist the wheelchair and me doing everything for his dad,but he didnt twig his dad was dying...he is the bravest person i know and i like his dad are the proudest parents,he is dealing with his dads death remarkably well which is off putting for me,but then again i have never hid anything from my boys (with this one exception) our son like my other 2 boys are all very giving and understanding of their surrounding and people and tend to cope with anything,he told me saturday that i deserved a medal for looking after his dad,this of course brought a tear to my eyes, i told him i did what i did because he needed me no thanks is needed,people that care for loved ones do it because they want too...yes it can seem unbearable at times you have no social life and freinds and family tend to keep a distance because they feel sad at what they see,they remember a man full of vigour and merriment.someone who would like a laugh and joke a man who was very quick witted not the man they saw in front of them a shell of a man they use to know...death comes to us all in the end what goes before it is the important part how they touched you what they meant to you,they are the many memories you keep to keep that person alive in your heart...its just 4 days since he passed away and i feel empty,i have no one to look after the way he needed me too,so i am going to care for someone else some one that i am not emotionally attached to,i am going to become a carer and remember always what i went through with my sons dad so i can become a better person to help people in need...my sons dad has a name RIP Andrew Dolbly 43 years young but lived every day to the full...goodnight god bless...always remembered