Friday October 1st - A day for making decisions!

2 minute read time.

Mum phoned me early this morning, informed me she had had her breakfast and said 'so much for you coming in to give it me!'.  I didn't say that of course and she then said 'oh yeah, I remember it was lunch.'  That dealt with she informed me that she was feeling brighter and that she had had her blood pressure taken.  She asked when I would be in and I told her around 11am.  I then text Christine and asked her what the possibility would be of bringing mum home if there was still no bed in the hospice.  She and Dr Mehta had discouraged this and my uncle was adamant that I couldn't cope but I made up my mind last night that if it was possible it was going to happen.

The reason I made this decision is because it is what mum wants.  She wants to be at home where she can see the kids every day and where she has everything, and everyone, that she knows and loves around her.  She has told me she understands why she can't come home as she knows I couldn't cope and then I thought why can't I?  I am spending about 10 hours a day at the hospital and about 2 hours travelling back and forward so that I can keep the washing down and keep a good supply of nighties at the hospital (they lost a brand new one, first time on yesterday, today!).  During my time at the hospital I do everything for mum and the nurses do nothing.  I know it's going to be tougher because she will be with me 24/7 abut it's tough now especially when I have to leave her there knowing that it will be hit or miss whether she gets the care she deserves or not!

Christine came to see me and mum this morning in the ward and we set things in motion to make it possible for mum to come home.  Mums district nurse rung me this afternoon and has ordered a hospital bed to be delivered Monday.  She will also sort out a Marie Curie Nurse and Hospice at home.  On Monday we have to meet with the social worker at the hospital to put the care package in place and then mum can come home.  I don't have a lot of faith in social workers as the one mum has had since diagnosis has been awful but Christine says it will be a different one.  I hope she gets her finger out on Monday and that if mum is not home on Monday she will be by Tuesday.

It was interesting that mums district nurse did not take to the nurse from the ward that had rung her.  This is a nurse mum also has no time for as she says she's nice when I'm there and nasty when I'm not!  Tne District nurse has also said there will probably be no need for mum to go into the hospice at all.  She asked what mum wanted and I said we haven't discussed where she wants to die as she doesn't acknowledge it's going to happen, her way of dealing with it, it's not happening.  However, I believe mum would be much happier at home, maybe at some point we'll discuss it maybe not,  it's got to be about what mum wants and if she doesn't say then I'll do what I think is right.

So today has been a day for making decisions!

Anonymous
  • FormerMember
    FormerMember

    Hello Caroline,

    Glad you've started the ball rolling and I hope it goes as quickly as they seem to have led you to believe! At least the district nurses and Marie Curie and Hospice at home can be quickly put in place - it's the "other care package" that they dragged their heels over with my Mum (Social Services funded), but, if you have all the others in place, I am SURE you will cope until the funding is in place for the carers to come in.

    All the very best and still praying that you will have your Mum home VERY soon! As others have said, you still need to take care of yourself too, so that you are fit to take care of your Mum, but you will find that the Marie Curie nurses and the Hospice at home will allow you to take a little time - confident that they are more than competent to look after your Mum -  while you rest for a little while. You know where I am if you need me for anything. God Bless.

    Love and hugs to you and your Mum, Rose x x x x x x x

  • FormerMember
    FormerMember

    Hi Caroline,

    I am glad that are you going to be able to bring your Mum home.  I hope that this happens as soon as possible and that things go smoothly.

    Lots of love to both your and your Mum. xx

  • FormerMember
    FormerMember

    hi caroline,

      Glad you have reached a decision which i really believe is the right one for you and your mum. You will get the strength to look after her. You and your mum are so lucky to have such a special relationship and share the love you have for each other.

    love to you both

    koo x

  • FormerMember
    FormerMember

    It is what I would want - especially with a daughter like  you. Make sure you  remind the NHS or PCT that whatever they provide you with will still  work out a great deal cheaper than the sub standard treatment they are currently providing!

    Hospice at home care can be brilliant - they should be able to advise you on all the options and are the best port of call for medication advice. Your doctor should be grateful to have the onus taken off them.

    It may be necesarry to have a little money put by for  paying for some help later - depending on how much support is available. You will need a bit of time for shopping, sleeping etc. Even professionals don't work 24 hours.

    I think you are brilliant. Just try and stay healthy yourself - you need to get sleep and help in  order to stay focussed. So easy to ignore! So important when it comes to making the right decisions and holding everything together.

    Sure you are more than aware of all this anyway - may be able to help re moving and handling, but guess you will get advice from others. If not please pm me.

    Thinking of you both so much and feel so inadequate when it comes to support, but if caring counts then it is there in spades. XXX

  • FormerMember
    FormerMember

    hi caroline i hope that everything works out for you in getting your mum home so that you can spend precious time together .will be thinking of you both .your mum is blessed to have a daughter who cares for her so muchlove valxxxx