Hi jacci

Was thinking about you, and thought I'd check

To see how things are . How is your mum doing?

How are you coping jacci? I hoe your mum made

It home yesterday and everything is in place for

Carers to come in xx takecare Hun

Hi all, I havent been on here for a while as Mum came out Friday 24th Jan and I have been staying with her.

She has dramatically gone downhill since she has come home...very breathless and in a lot of pain in her upper back. She is supposed to be having carers coming out 3 times a day and they are coming once, I must have rung 20 different depts of this , that and the other and they all tell me to call another dept to sort it out so I have left a letter for the district nurses asking them to either sort it or contact the correct dept to sort it.Im wondering if the fact that I have now come home will speed things up.  Hospice nurse came around, she was lovely but we had to talk about things like putting Mums affairs in order so it was a very emotional visit.

Mum now seems to be getting confused again I have been going through her pain killing medication with her ever since she came home and she just cant do it now, she has just rung me asking how to use her home phone which was the phone she used to call me...I feel like the lowest of the low having left her.I can only hope and pray that when the district nurses come round tomorrow morning they notice the deterioration since Friday and do something.I have written her out a note with  timings and doses on for the painkiller but I dont know how she will get on, I was going  to go back Weds to stay the night and do shopping and that sort of thing but may well go back tomorrow if she cant cope.Its very unfortunate but my work have not been at all helpful, I asked for a week off compassionate leave, as that is what mac nurse and gp told me to do, which is for death or serious illness of a close relative...guess what Mum doesnt qualify for serious illness would you believe, I must admit I got so so cross but my gp told me to self certify for a week...I have worked for my company for 10 years and have one of the lowest sickness records in my 100 strong dept!I have not felt stress like this since my brother died suddenly 9 years ago but am back to work Tuesday although how I will manage I really dont know.

I feel I am at the end of my tether now but hopefully will have a good sleep..at Mums I have been sleeping on an inch thick mattress on the floor! Mum doesnt know the timescale...on notes hospital has said weeks/shortmonths...does anyone know what short months could mean?

I cannot believe the difference a few days has made in Ma.....I hate this all so much but then I know we all do dont we.

Take care all.

Jacci xxx

Hi Jacci

Have been off forum myself for a few days.Am sure you are emotionally and physically spent at present.  Its very hard trying to cope with day to day life and it sounds as though because you have been available for your Mum the local services have been a bit slow to respond.  Have you spoken directly with your Mum'sGP as they should be able to home visit as a matter of ugency and they will put district/community nurse in place. My hubby's consultant did all this on our behalf so we feel very lucky as it helps relieve the pressure a little.  Sadly in some areas it seems its only constant calling that can make things happen and I do hope you can manage to have something in place soon as your Mum sounds like she needs more help now that she has become weaker and thus more confused.  As to your query about timings have not had to face this yet with hubby but six years ago when Dad was ill with cancer they first gave a timescale of 3 months (he was in hospital at this point), when it got to shortmonths they explained nothing was exact as people shut down when 'the time comes'. Dad told us he would make it more than they said as he wished to have his birthday at home plus his wedding anniversary.  In fact in celebrated both those in his own home, returned to the hospice 2 days after his birthday and told us he would be happy to go anytime.  His pain was controlled and the last time I saw him we were still able to laugh at his cheeky way with the staff. He died 10 days after his 85th birthday holding the hand of his 'special nurse' (his choices had been made and adhered to at the end).  Its one of those things that I am not sure any of us can know for sure the if's and whens are one of the most difficult to handle and even the experts can get it wrong.

Sending you virtual hugs and really hope you can get her 'carer's routine set up to work correctly which will in turn help your coping mechanism a little.  Takecare.Jules xx

Hi Jules, I hope you had a lovely break.

Im sitting in bed still just crying..will call Ma about 12 as carer and district nurse should have been by then. If Im this emotional I have probably done the right thing coming home maybe to let it all out today so Im strong for Ma when I go back..how I will work tomorrow I dont know but I will take that as it comes. Im very disappointed in my work so to be honest Im not too bothered about them, they can just get on with it...I have more urgent things to be thinking about. Im waiting for the district nurses to call me and will see what happens there.

Ma said to me a few days ago that everyone dies and she is no one special but as I said to her then she is special to me (even though we have had a wierd relationship prior to this. she never wanted to see me!!) she is my Ma and its all just too too horrid.

I need to sort out my own cancer check up today as Im late doing that with all that is going on so I know coming home was the right thing to do as I need to make sure Im still in remission and she hasnt called me yet this morning so maybe she is a bit less confused than she was last night, I really hope so.

Rambling again so will go now..again the support on here is wonderful, I dont think Id be coping if it wasnt for releasing stress on here...I really missed not having internet access at Mums!

Take care,

Jacci xx

Ps Jules...your Dad sounds like he was a real character!! xx

Just come off the phone to Ma and she has said she needs to go into a nursing home as she cannot walk 2 steps without being out of breath and is being sick very often, carer has been but still waiting for district nurse.I have told her to tell nurses how bad she is and hopefully they can start the ball rolling on that. The idea is for her to go into a nursing home nearer to me, tbh I would rather she went straight into a hospice as I know the care there would be second to none but obviously they feel she isnt ready for that yet.

Mum was less confused but of course I had to start crying down the phone didnt I and she had to comfort me......a lot of support I am.

Take care all,

Jacci xx

Jacci

You have definitely done the right thing as you must remember to look after yourself as well.  Its a hard call when you are pulled in different directions but your own health and family is just as important and crying relieves some of the tension the extra stress causes.  Your must draw all the support you can around you and definitely see to your own health needs (do not feel guilty about wanting much needs recuperation time as in reality this will help you cope on a day to day basis).  By the way I can really relate to that 'weird' feeling regarding your Mum. I have never been close to mine (and never likely to be now) but still would not like to see her suffer (or anyone else for that matter) and at present am grateful she is in residential care and can be kept an eye on (this will stop when her savings are gone and then I will have  more pressures but I have to put hubby first and she does understand that (but it does not necessary make me feel good about it!!).  Your right my Dad was a 'character' but had a very different outlook on life as he survided the war (losing a leg) and felt every day was a bonus no matter what else life threw at him and he had some hard times when Mum suffered her bi polar episodes.  Its so strange now that I am facing my hubby's cancer journey (with its uncertain path) I seem to sense my Dad's presence and recall far more of his wise words and am drawing on that to strengthen how I cope.  He was a great storyteller and my parents were more of a couple than an actual family unit but there is no denying that their love for each other carried them through the blackest of times.

I hope the forum community can help us all cope and am hear to listen anytime you want to vent - is has surely helped many of us already. (As to your workplace if you can't cope tomorrow please 'don't' force it, despite what they say you must put yourself/your Mum first!!).  Hope you get some more positive news from your Mum'snurse soon.  Hugs  Jules xx

Our weekend felt like escapism (pushing the realities away for a few days and hopefully my batteries have recharged!!)

Hi Jacci

Sorry that things are so stressful at the moment. Would it help to talk to our nurses? They might be able to advise you about how to navigate the problems you are having with visits and referrals for your mum.

Calls are free from UK landlines and many mobile phones. You can call Monday to Friday, 9am to 5pm on: 0808 800 4040.

Best wishes to you at this difficult time.

Jane

Oh Jacci, just had to talk to my daughter and then have read your update.  Its lovely that your Mum is able to comfort you (she will still feel useful!!) and its does no good to hide your true feelings - Mums as you know have intuition on how you are any way!!  It will be a weight of both your minds if she is able to be 'cared for' 24/7 and it would be a lot more help for you if she is local (thats what my Mum's social worker arranged when Mum was moved into residential care but now my local council feel she could be cared for 'in the community' hence why they refuse to help with funding but thats another story!!).  The moderator has come up with great idea about calling the nurses and despite your emotions you sound very effecient in handling things - go with your gut feeling and get all the support you need.  Jules xx