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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 Annabel

    Thanks Annabel - obviously coffee and biscuits/cakes works well for us both.  So often actions speak louder than words don't they and my man has always been very generous bless him.  Hubby has been very grateful to have good back up since day 1 of diagnosis (had a consultant then who told it how it was (old school) which hubby appreciated at that time).  He has good relationship with the GP too (different one to me) and its good that they are sensitive to his needs (think I sometimes read too much into things or am guilty of over-thinking so am trying to curb my thoughts - what a learning curve life is!).  He has always been quietly spoken and considerate (just not into conversation/small talk) and we are now looking forward to having eldest grandson for a sleepover on Thursday/Fri as a treat for him (though he was worried about leaving baby Zack behind (they share a room at home) so may change his mind!!  Our daughter will come for lunch on Friday which will give her a break too.  This will also be the start of my holiday from work so am hoping weather picks up again so I can get outside.  You have certainly been kept busy (I worked bank holiday Monday - the joys of retailing) but am sure the holidaymakers appreciate all your hard work.  Thanks for your kind words which are much appreciated.  Virtual hugs returned and look after yourself.  Jules x

  • Offline in reply to jules54

    Hi Jules,

    Just logged in and was pleased to see your update about your hubby's appointment today.

    It really does sound as if your hubby's consultant knows him well and offers suggestions / options which still allow him some autonomy.

    I hope the adaptations to his medication help, Jules.

    Your trip into town sounded lovely. Shopping for a birthday gift and coffee and biscuits - sounds good to me!

    Your description of your ring in your post to Susananne sounds beautiful. Very much deserved, Jules.

    Enjoy your grandson's sleepover on Thursday - it sounds as if the run up to your holiday is going to be busy!

    Take care, Jules. Love and hugs to you, Jo xx

  • Offline in reply to Meerkat@65

    Thanks Jo, my virtual buddies are keeping me smiling as usual.  Hubby is watching 'fishing' on tv so I am playing on the laptop and see my e-mails pop up!  I feel very lucky today (despite all the mixed up emotions).

    How are you doing?  Bet the puppy is growing up fast.  One of the girls at work has a 'rescue dog' - collie - and I cannot believe how quickly she has grown (see updated photos every so often) and the pleasure she is bringing the family.  Love dogs myself but have never had one but my brother in law and his wife have a huskie and a white  alsation (both acquired in the last year so they have their hands full).  Sending virtual hugs and appreciate you kind words.  Jules x

  • Offline in reply to jules54

    Hi Jules,

    No problem with a joint reply. Sound like you have a very understanding consultant who puts things in such a way your husband feels he has some input regarding his treatment. It must be so hard for him to have to talk about his problems especially as he cant talk to you about his feelings.

    Glad to hear hubby was able to be with you when you chose your ring.

    Take care, best wishes to you and hubby, Brian


  • Offline in reply to woodworm

    Thanks for your response Brian.  Am learning to cope on a day to day basis with my quiet man.  Just want him to be aware (and know he is) that I am there for him (why would I change after 37yrs marriage and a few years dating before that!!! ha ha). I know its  not that he won't talk to me; he finds it too emotional to talk to anyone really.  The support we have from his team is amazing but then they are dealing with it on a day to day basis (truly admire their dedication and understanding).  His support worker has been along for the ride from the start and is available on the end of the phone if either of us want to chat (I somehow find it easier to chat on the forum - maybe its for the best).  Despite the emotions of the day I am feeling rather peaceful at present (perhaps because appointment has come and gone) and nowlooking forward to our grandson's company later in the week.  Children are a great leveller in the scheme of things.

    Take care of yourself and Mrs B and hope your Dad doing okay too.  Regards    Jules x. 

    P S Finally stopped raining here but a bit late to do anything outside

  • Offline in reply to jules54

    Hi Jules,

    Hope you have recovered your energy from when you took your young grandson to the park. Young people seem to have so much energy and never seem to get tired. When I see my three grandchildren, it makes me feel tired just watching them running about. I spent a big part of Friday on my laptop as I have found about ten places where I can advertise our wood club show for free and on some can even include a photo. It's our 29th show so want to get as many people there as possible. My cancer meeting was very interesting and I leant a lot from it. Today I want to turn a set of owl salt and pepper pots for Mrs B and if they turn out okay will also do some for our show as I have bought five pairs of plastic bungs.

    Hope you are having a relaxing day today. Have you got anything planned to do for your few days off?

    Dad is still okay but is still very weak and tires very easily. Brother in law has at last seen an oncologist and has been told they can treat his cancer but cannot cure it. He is due to start chemo in about four weeks time.  Mrs B doesn't say much but I know from that alone she is very worried but doing my best to support her and my brother and sister in law as well.

    Have a pleasant time during your short break from work. Sending best wishes to you, hubby and family, Brian


  • Offline in reply to woodworm

    Hi Brian

    Hope you enjoy your 'turning' for Mrs B - bet she is quite excited at the thought of getting two new owls which wil be useful too - look forward to seeing a picture when you are able. Your Da must have a very strong spirit and constitution - he has been through so much recently.  I know you will be the greatest supporter for Mrs B and her brother and sister in law during his cancer treatment and hope this will give him some good quality of life for some time to come.  With constant medical changes/innovations/research no one can really tell what lies ahead but anything they can do to control it will, I know be worthwhile. Will keep you all in my thoughts.

    My days off have no definite plans apart from one day out with  my friend (we are hoping to spend the day around the Oxford area as we can get the coach locally and they run every 10/15 minutes.  We have both been there before but not together and going on a weekday (and once the children are back at school) should make it a little less busy.  Our Anniversary is on Wednesday but no specific plans.  Hubby cannot walk very far now and so far has refused the help of a stick/chair and really does not want to 'be seen' I feel.  He is very aware of his physical deterioration and despite suggestions from his team to 'get out and about (with assistance) this is not something he seems to want.  I would push him anyway at any time but even offering my arm has caused a problem so have to accept defeat for now.  He is spending much of the time sleeping - this cancer causes extreme fatigue and added to the medication he is sometimes asleep more than he is awake  He seems relieved when I go out and about so expect I will take myself to the shops/garden centre etc and will be visiting Mum as usual.  I am also taking the grandchildren to the park on one of the days as my daughter has an appointment and it will be easier not having the children in tow and we can do lunch afterwards which will be lovely.  The eldest goes back to school on Wednesday (amazing to think the school holidays are nearly over - its seems only days ago that we were wondering how to keep them occupied for six weeks!!).  Of course, weather permitting I will spend time in the garden.  Have mowed the lawn this morning and started cutting back roses/shrubs (ready for pick up by the council early in the week which will free up the 'green bags' so I can start again). To be honest it will be nice just to take it as it comes and not have to factor work into the week.  When I return it will be to work 'alone' on the department which will be interesting to say the least as we build towards the busiest time of the year  - still its only three mornings and I still only have one pair of hands so its not as though I can do two people's work - I feel sad for the customers but have noticed a lot of local shops are already cutting staff to make ends meet so its no surprise we have to do the same - there is  no doubt that online business is taking feet out of the shops (but then we all have to save money somewhere and there are certainly good bargains to be had through interenet companies). Sign of the times.

    Am sure advertising for free will help bring people into your next 'Wood Club Event' - 29 years is wonderful and if I lived closer I would put in an appearance as I love attending these kinds of shows with so much talent and beautiful crafts on show.  Talking of wood, when I was in the park with our grandson, we wondered around naming as many of the trees as we could - he loves to know what he is looking at and I even took photos of some of them.  He has a few bits to make a nature table interesting (all found already on the ground I might add).

    Well have had a restorative cuppa and as hubby is sleeping again (he finally had his breakfast about an hour ago) so lunch will be more 'afternoon tea' (I try to have my meals at the same time but it does not always work that way).

    Enjoy the rest of your day.  Kind thoughts to you and Mrs B.  Look after yourselves.  Jules x

  • Offline in reply to woodworm

    Hi forum buddies

    I wonder if you would mind giving me your thoughts on the following predicament?

    I am on a week's leave from work and hubby (having of course been asked) does not want to do anything or go anywhere (apart from his GPs on Thursday) as he cannot walk  far due to breathlessness/fatigue  and will not let me arrange walking aids/chair.  I have a day out with a friend which he is okay with.  However today I have seen that the Tall Ships Regatta  is coming to Greenwich later in the week (something we would both normally love to see) but having mentioned it to him, he has shown no interest even when I said I had thought about going.  I would love to go but feel bad about going without him as this would mean another full day out and wonder if I should just forget it?  Jules x

  • Offline in reply to jules54

    Hi Jules,

    What a quandary. I've read your post through a few times and it's really hard to know what to say!

    Would it be worth 'researching' all the logistics of the trip and then suggesting it to your hubby again, emphasising all the 'positives.'

    Not sure when you first mentioned the trip to him, but it may even be that after a few days mulling the idea over, your hubby might have warmed to it.

    I'm sure your hubby would want you to go along, even if he doesn't wish to, and if he says as much, you should go and not feel guilty.

    Sorry I'm rambling and ineloquent tonight - dog having mad half hour, plus mind is numb from staff training all day!

    Hopefully, some of your other buddies will be more helpful!

    Big hug, Jo xx

  • Offline in reply to jules54

    Oh Jules ,I wonder if you asked hubby to have a think about the trip and say how much you would like him to go with you being as you are on holiday and  that it would mean a lot to you if he went with you ...If hubby still dosnt want to go  you could still go and take your camera take some shots to show him  later ..This is a difficult one  ...Take care Jules and make the most of you week off   .....Susananne x

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