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Continuing the journey

Hi All

Decided to drop the 'month' from the title of this thread as time moves so quickly and the date becomes irrevelant so quickly.

Hubby and I both feeling pretty drained today but not because of his illness. However it is something that has made both us further stressed and 'outside our control'.  Prepare yourselves for a rant or look away now.

Having put in a long work day yesterday (both of us). I switched on my mobile on leaving work to find a message from the social worker for Mum (regular readers of my thread will know what we have been going through recently).  The upshott of this message was that the Social Services panel have decided that they can offer Mum a place at a sheltered housing complex but not the most local one. The call was to advise me of the panel's decision and to tell me that a visit will be arranged this week, preferably by Wednesday, for Mum to be taken to visit the flat and be told about the package of care and how it will work. They require a decision from Mrs K (this is how my mother is addressed in the follow up e-mail!!) by Friday otherwise the placement will be offered to another service provider!  Unfortunately this means Mum has little choice but to move further away (closest sheltered housing has no vacancy and they are  not willing to help fund where she has spent the last 9 months 'settling in').  The guilt I feel at being unable to cope with this is overwhelming, my hubby is very supportive and angry in equal parts and I am dreading the days ahead.  I am unable to take leave and my negative feelings towards her social worker would not work in Mum's favour as she needs to go on the visit with an open mind and the care home staff state she is quite able to make her own mind up.  If she agrees I will be unable to visit as regularly (my problem not theirs of course) but apparently the social worker will accompany her and I have asked to be kept informed.

Even typing this is making me sad/angry/frustrated and emotionally/physically drained.  I was due to visit Mum today but this is on hold until I have spoken to the care home this morning. Hubby says I should leave it till later in the week when we know what is going on and I suspect he is right (bearing in mind my physical upset involves many 'loo' visits (enough said!!)).

Sorry for all the negativity but just needed to get it out and try and get  myself together before I start on the phone calls.

Hope everyone has a good day.  Regards Julesxx

  • Good Morning everyone( Jules, Jo, Brian, Garf, Hope23, and Sueanne) and wishing you all a Happy New Year for 2015.

    Jules I am sorry to read your husbands breathing has worsened overnight, i do hope the nurses visit soon. It's good to hear you feel well supported by them and available when you need them. Will be thinking of you my good friend . 

    Loads of hugs

    Annabel. xx

     

  • Happy New Year, (elusive) Annabel! X Jules, sorry to read your latest post about how your hubby's breathing has worsened. Glad you've got good support available. Hope the nurse calls soon. Take care lovely. Xx
  • Happy New Year everyone = lets hope its a good-un! We will keep you close in our hearts and minds - especially = well - everryone here (as we all have our uncertainties and worries and concerns - I truly wish it was different).  

    All the very best for 2015

    we will be thinking about everyone here facing uncertainties

  • Happy New Year Annabel

    Thanks for your kind words. Thankfully hubby not eperiencing any pain and we are wondering if he has a cold (last visit to doctor and she was streaming!!!!).  Very thankful to have good team in place and kids live close by too.  One of the major problems with Mesothelioma is breathing problems and even though its expected somehow nothing really prepares you for changes, if that makes sense.

     

    Have just had call from nurses and I can give extra meds to help so thats a relief and phone as and when necessary.

    To end with a 'smile'  our son in law has explained things to 6yr old grandson and having digested info then asked if he could go and watch his programme.  Later added that he could help them to if needed. Little kids just blow you away

    Be good to yourself and all the very  best for 2015.  Virtual hugs  Julesx

  • Thanks Jo

    Nurse been in touch and guided me through giving extra medication to help with breathing symptoms. Can ring them any time.  They say the medication can help alleviate some of his breathlessness(and anxiety it causes) and laughed when I said maybe it should be me taking it as I was the 'worrying one'. Feels good knowing I can chat to them and take advice.

    Hope you doing ok and bet the pets were glad to see you back (and your partner too) after your family Christmas.  Sending good virtual vibes for 2015. Jules x

  • Thanks for your kind words and understanding.  Wishing you and your family a peaceful 2015.Jules x

  • Hi Jules, glad the support is there for you 24/7. Has hubby got antibiotics as such?? Or are you using clomazapan for anxiety? Oh my darling you are doing such a great job, never doubt that or forget it. You are a star.. Grand kids, any kids are just magic, They speak as.they see it. No bull. Love Kathy xx
  • Hi Kathy

     

    Excuse the humour but am taking regular 'shortbread'  breaks for anxiety (mine) and hubby just frustrated understandably that he cannot 'help me'. Its a saddening fact that all my virtual buddies understand only too well this journey but I am never short of words (hubby might say this is not an ASSET!!!) and have been chatting with our daughter and son too - they are only 10 and 20mins drive away if required.  The little uns keep us all sane (hard to remember me at their ages ha ha).

    Wishing you a peaceful and relaxing 2015.

     

  • Jules im so sorry hubbys breathing has got worse overnight has any one said anything about home oxygen unit Tony had it and you can also get a portable one for going out Gp usualy puts in the order but it arrives quickly a unit gets delivered to your door when you need a new supply nurse may also be able to help .Im sure it will help hubby a lot ,the only thing I can remember is the unit is noisy but you do get used to it  ,hope this helps ...Take care Jules thinking of you ...Big hug ...Sueanne x

  • Good morning Jules,

    Wishing you and your family a happy new year. Pleased nurses were able to help regarding hubbys meds and love the humour regarding shortbread breaks.