Got Mum up Friday morning for her hair wash ready for the hairdresser's visit in the afternoon. I took her through to the bathroom on the commode as per usual and popped her feet into a bowl of water to give them a soak. I suddenly heard her breathing change and when I looked at her I honestly thought she'd had a stroke. She was totally flat and unresponsive. I gave her ventolin (she also has COPD) and took her back to her bed. It took 5 minutes to get her into the sling and by this time she was coming round. She said 'no hospital' and by the time I'd got her into bed she was looking a lot better and was able to speak a little. I thought what's the hospital going to do except distress her, what's the point? I phoned the community matron....day off, so I asked for a doctor's phone call to see if someone should come and check her out (she has a UTI and chest infection and is on antibiotics. 4 hours later I get a call back. I explained that Mum has CBD and he said 'CB what?' after I'd explained that he said 'well now that's she's better I'll get the community matron to call you on Monday'. I said 'she's not better she's just not as bad as she was. Ever felt totally alone?

9 Replies

  • You are not alone here! Ever! It doest help and I know that feeling of helpless too. Love and thoughts to you both. Enjoy the fact that she is back and responsive again for the time being. Hugs to Dizz58

  • Thank you honjen43 it does help. He told me they would normally come out but that they were really up against it. I wonder how they'd feel if it was their relative?

  • Sorry about this - felt alone like this many times with my dad too...

  • I know the feeling. It isn't my nature to make a fuss. I am having to learn that I sometimes need to but don't always know when is the right time.

    It is lonely.

    love and hug, Jean

  • OMG,!! I think I would have just dialled 999! They don't always take you to hospital, nowadays, a Pharamedic comes out first to assess. Your doctor needs shooting, but sorry, mine is in the queue ahead of yours. Where did these numpties get their training???? Why is it, if you have a life limiting disease you are automatically put to the back of the queue? Unfortunately, your treatment proves you are NOT alone, lots of us get treated in the same way!

    Sending a very large hug across the ether, to prove that we are all here, listening to you!

    Lots of love


  • "numpties"? cute.

  • You need to have a talk with your doctor, maybe hand him some information about CBD from the PSPA.

    He should give your mum more priority and should be a lot more concerned about her and definitely be much more supportive, than he is now!

    Push for those things.

    We go to see our GP periodically, just to have a chat about husband,who also has CBD. The GP likes to know how things are going and to see if there is anything he can do for us,as things progress.

    He has told me that if I didn't want to go the surgery, he would come out to us and that just to ring the surgery and an appointment would be made a priority.

    He is lovely.....his name by the way is Dr Payne!!

    DenB x

  • Thanks for all the lovely, kind replies on here. Our community matron came out today with her stethoscope and says the chest is clear enough for her to be happy with it. So no more antibiotics for the time being. It's pointless telling Mum's GP anything, the last time he saw her was 4 years ago when he referred her to the neurologist, he only works 2 days a week now and I would imagine he spends those in meetings and doing admin. The community matron is learning lots from me about PSP/CBD (her words not mine) so I hope I'm doing my bit to raise awareness among our local NHS staff! Mum's GP surgery is now so overstretched it's nurse led (4 nurses to 1 GP) and they call him/her in if they think they're needed. I would rather Mum didn't have to go to hospital and if I'd called 999 they would have been duty bound to take her to casualty because she'd lost consciousness. Nothing ever happens there except having to repeat the same thing to everyone who comes round the curtain and 3 days later being discharged hungry, thirsty and with a pressure sore that takes me a couple of months to heal. I used to be so proud of being a nurse and when I worked in care I always did my best. I had to go out for a few hours yesterday and had 2 carers in for half an hour to give Mum a drink and hoist her to the commode. When I got home she was soaked as they'd failed to put the pad over the bit of anatomy the pee comes out of. Is it any wonder we despair....love to all you brave souls out there, sufferers and carers alike, you have my respect xxx

  • Dizz58, It might not be a bad idea for all of us to print out a detailed list of what the symptoms of PSP and CBD are, and have them ready to go when our loved one has an emergency. There are plenty of sites on the computer that has the lists.

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