I'm very tired but a need a rant!
On Wednesday my dad kept sleeping in his chair, had a lot of neck pain (would do as head resting on chest)) also had bad back pain and at 6pm I decided it'd be best if we could get him into bed and we did, no dinner for dad, not concerned by that as he has quite a lot of meat on him!
Thursday pain levels still bad so we gave dad oramorph (very weak morphine solution) prescribed by hospice, slept all day, ate 3 tiny cakes and slept all night (obviously throughout this time many wee breaks) then slept all night
Yesterday Friday, still the same pain, continued with oramorph as prescribed approx every 6 to 8 hours, still sleeping and refusing food. Very tired n non responsive to instructions ie when he wanted to get up for a wee, dad couldn't help or wouldn't (I think couldn't) and then to crown it all the walking stopped!
Dads walking has been v poor for months but yday nothing! It was v hard to get him back safely in the bed but after 75 minutes and pushing and shoving we managed!
In desperation I rang the neuro team at 8am yday and someone rang me back, took the details and said she'd call me back....I also phoned the physio from the neuro team whom said he'd call me back, he didn't! The lady from the neuro team called me back 8 hours later to tell me not to get dad out of bed and there was nothing they could do! I explained dad hasn't (as at yday) had a poo for 10 days and when it comes we will need to get him onto the commode, I said I think we will need a hoist as his legs seem to have stopped working, her response was use a bed pan, we don't have one and secondly my dad is way to heavy for mum n I to get him on one! So she said ok well he'll have to poo in his pull ups! For info his poos, are massive, like horse poo, not joking! At this point I am seething and told her she wasn't listening I needed a physio out to try and help n probably a hoist! Again she rattled on but just kept going round the houses (my least favourite behaviour) so I told her that before I go mental we should end the call, she said no problem she'd call me Monday! I could wring her neck! Who the **** is she telling me that my dad (a very proud man) should poo in his pull ups?!
As I'm sure you all know having a poo for a Psp patient can be like giving birth n is always a v long and drawn out process! There's no way my dad would want that!
So I phoned the hospice, dads wonderful clinical nurse came, new medication, some tips on getting dad out of bed etc and left giving me a hug as I was a wreck! He has also orgabised for the hospice at home team to come in for the next 3 days to help with personal care!
After 15 months of being on the wheelchair list and a lot of mucking about we are still awaiting a suitable chair!
In the meantime my dad seems to be getting worse v v quickly and I'm at my wits end, continually crying (not in front of him) and my mum (love her) seems to think this could be just a stage and dad will be fine well Psp fine!
I'm thinking this will kill me very soon because the toll on us carers is enough to send you into an early grave!
Big hugs to you all and apologies for the bloody long rant!
Happy Saturday I hope......X