May be some light at end of very dark tunnel

Well what a week, last week was.

We got an interesting phone call from the city housing people to say there may be a fully accessible bungalow available soon in one of the prettiest villages near here. It has not been fully finished off yet so if we are successful, there will be many cat1 waiting list clients who will want, we may get the chance to have a say on what accessibility things we need to make it work for us.

Then on Saturday we received a letter to book an admission for the vital operation that hubby needs to get our lives back on track. I rang first thing on Monday and was somewhat disappointed as the earliest they could offer was 21st September, not long you say. Well it is when you are existing in a living hell, full of pain, no sleep, cant eat properly and feel like your own muscles are crushing your insides.

Then on top of that he has a urine infection that they will not aggressively treat until he is  in hospital prior to his operation. This makes him even stiffer and his spasms even more severe. It also means that 3am in the morning I am often found giving him another urine catheter.

Grit our teeth and get on with it as usual as no one in the medical profession, listens or hears our cries for help, no one gives a shit, and don't we know it.

Ground Hog Day...

You could re read my previous blog over and over again as that is life here in our household. Relentless same thing 7 days a week , no rest days for either hubby or me. Particularly bad day today, feel like walking on egg shells trying not to set off one of his outbursts born of pain and frustration. He is having one of those particularly bad days, "if they (medical profession) don't do something soon I wont be here for them to do anything" intimations of suicide, I listen to his angry words and wonder yet again if I could do more, feel like it is my fault, that we cant make anyone listen and most importantly act.

It was back in March over 4 months ago that he made the brave decision to let the medical profession operate on him again, to insert a Baclofen Pump. He has lost all faith that anyone can help him live again. His is not a life worth living at the moment, every breath = pain, every movement = pain. So here he sits in our living room watching TV (well looking through it lost in his own thoughts) sitting as still as humanly possible, waiting for the next painful spasm to nearly throw him from his chair. While I talk to my only companion this computer, trying to find answers to the unanswerable.

Why are people like Hubby left in the community in such pain when there are medical interventions that can and morally should be done urgently to stop them from going out of their minds.    

I'm here but where are the professionals ?

August 1^st  2011:

00:20    Go to bed. Manually lift into bed. Work on TDB’s legs to get him settled.

00:45    Finally get to lie down myself.

02:30    Reposition TDB’s legs.

03:30    Reposition TDB’s legs.

04:20    Reposition TDB’s legs.

05:30    Needs Catheter doing early. Sit up on edge of bed. 500ml collected.

07:00    Reposition TDB’s legs.

08:10    Get myself up.

08:30    Get TDB up. Make coffee + give him 250ml of Cranberry juice.

09:00    6 sprays of Sativex taken.

10:00    TDB does not want anything to eat. Wash and give shave. Sitting up difficult, breathing a struggle, hip spasms bad. Put him back to bed to work on his legs for awhile. Get him back up 11:00.

11:45    Catheter done, darker yellow 250ml. Stretch legs out again in wheelchair. Pain levels quite high again today, hip / leg spasms bad. Took 2mg Detrusitol.

12:15    Cook bacon + egg sandwich which he manages to eat.

12:40    Stretch TDB’s legs. TDB watching TV trying to keep as still as possible to avoid pain.

15:00    TDB put back to bed. Reports bladder snatching like he needs to go to toilet. Exercise given on bed. Takes 2 Neurofens.

15:30    Start to prepare dinner, corned beef stew.

16:30    Got TDB out of bed. Exercising him before hand. He then took 5 sprays of Sativex. Says he is coping with painful snatching of leg / hip muscles today but feels strong enough to deal with.

17:30    Catheter done early due to snatching feeling in bladder.

17:45    Dinner served.

18:30    Pudding .

18:45    Leant forward as feeling out of breathe and tight across chest. Put back again will watch for further signs of distress.

20:00    Detrusitol 2mg. Feeling flushed. Antibiotics taken.

21:00    Extra Catheter, mid yellow 250ml. Both go to lie down for a couple of hours.

23:20    Get up. Brush teeth get tablets ready.

00:00    Catheter done, mid yellow 150ml.

August 2nd 2011

00:25    Tablets taken. Back to bed.

00:40    Work on TDB’s legs, get to bed myself.

01:45    Reposition his legs.

03:30    Reposition legs.

06:00    Catheter 350ml mid yellow.

07:00    Reposition legs.

08:10    Reposition legs get up.

08:30    Get TDB up after working on legs. Says back & groin pain very bad today. TDB needs to wear shorts today due to cleaner coming at 10am.

09:00    Coffee & Fiber orange drink for TDB, bowel day.

09:30    Wash TDB.

Same thing day in day out 24 hour back breaking care with no breaks....