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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

  • Thanks Annabel, really appreciating the support of my forum buddies.  You will see from my reply to Brain how things are at present (no point typing it all again!!).  As with anyone in this situation we can but do our best to keep him 'loved and nourished'.  He went straight to sleep as soon as we got back - no surprise - but had driven to the docs and then dropped me at my Mum's (I walked back as did not want him hanging around).  Hoping that the course of steroids will help him a little (or a lot!) .

     

    Hope you are feeling better too.  Little Zack has his first bad cold/cough so all the family having a few disturbed nights.  Change in the weather and usual bugs at this time of year.

    Look after yourself and hope rest of the family keeping ok. Jules x

  • Hi Kathy

     

    Thanks for your supportive words.  We are  never alone on this journey but its good to have the forum to express ourselves in an open way.  As you can see from my post to Brian (which seems to be 'in duplicate' (extra sensitive Post Now button or twitchy finger - not sure)) hubby has been prescribed steroids which I will collect later (prescription sent electronically to our local pharmacy so should be ready today).  Am keeping fingers crossed these will help in our quest to improve his appetite as the rest of his check up went ok - he has better blood pressure than me!!

    By the way please do 'bellyache' to me/forum anytime you need to - I, for one, feel the power of the written word really helps release pent up emotions and as hubby sleeps (he has found the idea way to avoid the 'nagging missus') I am catching up with virtual life . 

    Needless to say I will only take time for myself when appropriate though hubby feels better if I can 'carry on as normal' while this is possible.  Small steps and all that.

    Take care of yourself and appreciate your words of wisdom.  Jules x

  • Hello Jules I hope steroids work   with hubbies appetite,from my experience with Tony they certainly work well they usualy put weight on eventualy although I remember his face did swell a bit too bless him but as you know everyone is different ..Well the rain has started againd its not too warm at 8.8 degs ,Rusty and I had a nice dry walk earlier though and when I returned My eldest son and my daughter had popped around for a cuppa Justin has a key so they were able to let themselfs in so that was a nice surprise ..I bet you are busy at work now with Christmas around the corner ,so take care Jules and rest when you are able  .....Sueanne xx

  • Hi Jules, I'm sure the steroids will help your hubby. I used to take them for the three days following chemo infusions. They certainly enhanced my appetite, even three days worth! I used to take the last one at 2pm each day otherwise it would have lead to insomnia each night! It's a shame the dietician had to cancel, but hopefully, your cupboard full of goodies will soon be depleted once the steroids kick in! Take care and enjoy the rest of your afternoon - it's dry here in South Yorkshire, so a dog walk is looking likely! (Or a dog 'pull' in Paddy's case!) Hugs to you, Jo xx
  • Hi Sueanne

     

    Thanks for your post.  Raining here too now but I managed to get to pharmacy and back, by way of fish and chip shop (my suggestion was greeted with a smile so scooted  out before he could change his mind) . He has just managed half a piece of small cod and a few chips so I am smiling too.  Hopefully the steroids will help (the dosage is just two each morning for a week and then 1 each morning thereafter).  He did have a course back in February which helped when we had a weekend away.  We must try anyhow. 

    Nice for you to find visitors when you returned from your walk - always great to catch up with family.

    Hubby's  sister, brother and sister in law, now have a move date for 5 December so our communications will be virtual after that.  (at least I have plenty of practice and a laptop at my disposal as no availabilty at work for personal use, understandably!). 

    Look after yourself. Jules x

  • Hi Jo and thanks for your thoughts on the steroids and am keeping everything crossed that they, and the conversation with the doc, will sink in and help with his current lethargy.  He has so many people rooting for him and we can only do our best to support his needs.

    Hope you enjoy the 'Paddy pull'/walk and that you are making progress with your own recovery.  When I updated our son on today's appointment he told me their dog is on steroids too which immediately had me reply that I hope it did not mean I had to take hubby for walks on a lead.  Sense of humour a must at the present time!

     

    Look after yourself and thanks again forum buddy.  Jules x

  • Hi Jules,

    I hope the GP's ultimatium along with the steriods help kickstart things for hubby.  Shame your trip to see your Mum was a little short-lived but I guess a good sign that she is having her hair done therefore taking an interest in things.  I have been busy getting the house ready for rental, so apologies for not being on here so frequently.  I do feel that having a new project is helping me move on in a much more positive way than keeping my parents house would have.  Still appears to be no news on PM on the new site, I'm still not sure I like this new forum!  Take care and speak soon.   Hope x

  • Morning Hope

    It was nice to see your name of my thread and know that another forum buddy is 'moving forward' with a new challenge.  Those of us that used private messaging obviously really miss that connection and I do hope that the 'forum designers' can find a way to re-introduce this facility since I had  no problems whilst using it 'in the old format'.  Having said that this is still a great place to offload for those 'old and new' users, as well as drawer knowledge/advice from others and I am increasingly amazed at the continued support I am receiving especially as I am not the 'primary sufferer'.

    Continued good luck with the 'rental' and wishing you and the family all the very best as we approach a very difficult time of year for so many.  Hugs  Jules x

  • Hi Jules, 

    Glad some more things are being tried for your husband. Steroids might help him a bit with the appetite. I am sure he sometimes feels that he would like to be left alone to sleep. Although he is the one with cancer there are moments and times where it is the primary carer who suffers. You are also so well supportive of others that your forum buddies like to let you know that we appreciate you for all your giving, both to your family and your friends on here. 

    Glad you had a lovely time at the weekend with your family. Good that your Mum was positive enough to want her hair done. :grin:

    I am slowly getting better, just a bit of a ough every now and then. i have hospital appointment tomorrow and staying overnight with my parents as my Mum is treating me to a trip to York with her by coach on Friday. Just the fact of having my mother on my own is a treat for me but I can feel some serious Christmas shopping coming on. Speak to you at the weeknd when i get back. 

    Hugs Annabel. xx

     

     

     

  • Morning Annabel

    Just wanted to wish you all the best with your appointment today and its great that you have time to spend with your Mum with an outing to York to look forward to tomorrow.  Many years ago spent a long weekend there with a friend and it was definitely good for the shopping side of things. You must let me know if The Shambles area is still 'atmospheric' and 'quaint'.  I loved strolling round the area.  If things are ok at home I will be having a day out to Bradford on Avon (Cotswolds) for lunch followed by an afternoon at the Bath Christmas Market on 6th Dec with a friend - thankfully my present shopping is already done but hope to be able to pick up a few treats nonetheless.  Look forward to hearing all your news upon your return. Hugs Jules x