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Continuing the journey

jules54
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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

  • Offline in reply to jules54

    Hi Jules

    sorry to hear about your work problems.  Given that the economy is improving (so they tell us) it seems odd that some of your colleagues are having their hours cut.  I can quite understand you wishing you could just walk but also understand why you dont.  I would love to just walk out but have to wait until I have a new job before I do.  However they will not get the three months notice they are expecting.  There is little they can do about it.

    Hope all goes well with hubby and his consult.  I guess it might be quite useful for you to go along to these so you can find out what he is feeling/thinking.  Glad he is till able to eat small amounts which is better than nothing.  the more he can manage the better he will feel (at least I would think so).

    Keep me posted.

    Gill

  • Offline in reply to jules54

    Morning Jules,

    Just thought I would come and thank you for your thoughtful message the other day and to say all was fine at the appointment.

    The only fly in the appointment was the hospital parking. They have changed the rules and the shortest time of ticket you can buy now is 2 hours. I am never there more than half an hour so was a little cross with this. I couldn't even find someone coming in to give the rest of the ticket to. So in future I'll park  in the town carpark and walk. Mind you maybe thats what they are hoping will happen.

    I hope you are having a lovely weekend, with good weather. We are having sun and showers here, hope today we have more sun as have got a project to finish as much as possible today so that we can get  a beautiful garden swing up. This swing is one I bought for my parents 50th wedding anniversary, they no longer want it and have given it to me. So now I need to get an area gravelled out in the back garden so that when I use it it's in a place where no one can easily find me.!!!!! Oh Bliss.!!!!!

    Did a lot of digging yesterday, more to dig today. It will be worth it.

    Back to cleaning tomorrow, one to do, then two on Monday. He ho.

    Hope your grand kids are in fine fettle and hope your husbands appointment goes well.

    Loads a hugs

    Annabel. xx

  • Offline in reply to jules54

    Hi Jules,

    Just wanted to say that I hope all goes well with hubby's appointment tomorrow.  Have sent you a PM.   Hope x

  • Offline in reply to Hope23

    Good morning Jules,

    Hope you are enjoying your bank holiday break. Sorry to hear about the changes at work, guess kindle has a lot to do with everyone's hours being cut. Like Hope I want to say I hope things go okay on Tuesday and I expect you will find out a bit more when your hubby talks to the specialist. It must be so difficult having to second guess how he is feeling. Doesn't look like you will be able to get out into the garden today with all the rain forecast,

    Take care, sending best wishe to you and hubby, Brian.

  • Offline in reply to jules54

    Good morning Jules,

    Just wanted to add to the good wishes for your hubby's appointment tomorrow.

    Looks like today's weather is 'typically Bank holiday' so hope you've got a good book at the ready (and a blanket for the knees!)

    Take care, sending you big hugs, Jo xx

  • Offline in reply to Meerkat@65

    Hi all

    Thanks for all the good wishes and kind thoughts for our appointment tomorrow. Fingers firmly crossed for 'not too much change' scenario but have my usual suspicions that more medication will be required,

    As to being in the garden it was  not the weather that kept me away (I did a lot out there yesterday!) but I was working until 3.15 today!!  We are now relaxing together in front of the tv with a hot drink .  Will update when I can.  Thanks for all your continuing support and Hope, will respond to Pm (read it this time) when have more info.  Best regards to all, take care  Jules x

  • Offline in reply to SUSANANNE

    Hi

    Hope all my virtual buddies will forgive a joint reply - I chat enough without you having to read repeats! .  Went to hubby's check up and it was pretty emotional for him.  Anyway he mentioned his increased breathlessness when walking and some 'pressure spots' plus he finds he is sleeping more during the day (he does  not like this) and how he is experiencing 'vivid dreams'.  His consultant gave him some options to try (including taking his morphine at different times and in half-tablets as he is actually coping quite well with the 'discomfort' .  His blood pressure was much better this time and as expected he had lost a little more weight and the muscle wastage is causing some loss of balance issues.  She was ready with suggestions to make things easier though the choice is up to him (stick, chair etc) if he wanted to get out and about with a little help rather than choosing to stay indoors.  She is very good at explaining things and really understands how it is affecting his life after being in such active work before diagnosis and the need to adapt if he is to enjoy his day to day living.  I was able to have a chat with his support worker whilst he had his physical exam which helps me too.  For now we continue with his current medication (with slight adaptations) and go back in November to see how things are progressing.  They are also open to changing his 'brand' of medication if suggestions dont help  as some work better than others for some people. Always good to know he has options.

    After the emotions of the morning he then drove into 'town' and we shopped for my birthday gift so I now have a new ring to wear and can tear up his IOU.  Very spoilt!! (and my turn to feel (but not show) emotions).  We then recovered by having coffee and biscuits  in nearby cafe before returning home where he is now sleeping (emotionally exhausted I guess).

    Once again thank you all for being 'out there' and being my supportive buddies and hope you all having a good day (weather here is dismal) and taking care.  Jules x

  • Offline in reply to jules54

    Hello, Jules The consultants visits are always a worrying  time but thank goodness for their expertise and advice and reasurance so hard to see the worry in our mens eyes too .But lucky you a lovely new ring  ,do you know Tony bought me a half eternity ring for our silver anniversary  then the last thing he bought me was a beautiful full eternity ring that I had admired for xmas two months before he passed away and what a lovely thing for your hubby to do you deserve a treat bless him .The weather has cleared up sunny and 23degs here in Cornwall I hope you have sunshine too enjoy the rest of the day take care....Susananne x

  • Offline in reply to SUSANANNE

    Thanks for message Susananne,

    Envying your sunshine, we have had two days of rain though daytime temperatures have been good.  What a coincidence that both 'our men' chose rings.My husband usually gives me cash to spend but as this was a special birthday (and our anniversary next month) decided he wanted to be with me though he refused to choose which one(Sales assistant very helpful in  showing lots of patience whilsgt I tried to make up my  mind!!) I already have a half eternity and because I work in a shop and would like to be able to wear it most days have chosen an appropriate 'inset' style which is something very different to my usual dress rings.  Have had a French Manicure (another treat) so, all in all, hands looking good.  We are currently being very naughty and indulging in a bowl of icecream (his lunch, my snack ha ha).

    Hope all is well with you and your family and that Rusty is enjoying walks in the Cornish weather.  Look after yourself.  Jules x

  • Offline in reply to jules54

    HiJules,

    Well that was a very positive message overall. I am so glad to hear of a really helpful and caring team that your husband has.

    We know they are out there but the the times we hear of negative experiences somehow outweighs the good ones. The consultant sounds like she is really thinking of your husband and his individuality. I hope the new suggestions do work for him.

    As you said a very emotional day for you both, I think your Birthday present is full of communication from your husband and I am sure you feel it too. Wonderful, you lucky girl. !!!!! lol.

    I love the fact that you recovered with coffee and biscuits.

    Yesterday after cleaning 2 cottages we went into town(Bank Holiday don't forget) to go to the tip with loads of recycling.!!!!! Wow, how exiting is that, anyway I treated my husband to coffee and cake afterwards as we did deserve it calories as well.

    And don't forget Jules your cyber friends are here just as you are there for us.

    Hugs

    Annabel. xx

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