Muddled Update - My head's all over the place!

2 minute read time.

First of all, thank you so much if you have sent me a PM.  It really means a lot and I do read them all, even if I don't reply.

John went into MacMillan again on Saturday morning after a terrible night of pain and having to wait for an hour for any relief from the twilight shift.  He asked to go in because he was so frightened of it happening again. 

He seemed to settle in OK but the next morning he was pleading to be allowed home again after trying to get out of bed and falling over.  I managed to calm him and persuade him to stay because we needed to get his symptoms under control. 

Then, the next day (Monday), I found him in a hell of a state because the man in the next bed had been trying to get into John's bed all night.  Not only that, the bay he was in was very noisy and in his agitated state, that was the last thing John needed. 

He was moved to another quieter bay and put onto diazepam to calm him which seemed to do the trick except that now, although much calmer and more painfree, he's terribly confused for most of the time. 

My daughter Nikki has offered to have us move in with her when he is discharged because she knows how difficult things are in the flat.  She has a big four bedroom house with a large dining room and a bathroom downstairs.  She says we can have the dining room and that John's visitors can still come and go.  As far as I'm concerned, it's an ideal solution and John is keen to go too.  I think it will do us both good to have people around us, especially in the evening when things really get on top of me and I feel so lonely with nobody to talk to.

The problem is that his daughter Jo is dead against it and I can't really understand why.  She's back at work now and things were better when she was around to help us but I'm virtually on my own now and everything is getting on top of me.  She has given some strange reasons for not wanting us to move, i.e. when he passes away she won't be able to drive past Nikki's house and remember her dad.  She also thinks it will be difficult to walk in and out like she does here although Nikki has assured her that it will be 'open house'.

Jo walked out of the MacMillan Unit today in tears and didn't come back but she texted to say she wasn't happy. 

What do you all think?  Am I doing the right thing?

Hope this all makes sense.

 

Anonymous
  • FormerMember
    FormerMember

    Definitely.  It's what John wants, it's what you (as John's main carer) wants.  More importantly, it's what you both need.  A bit of support and, in an environment that's easier for you both to manage.

    I really don't understand why John's daughter has a problem with it.  The reasons you've mentioned are all about what she wants and she should be thinking about what John wants and needs.  Even if she did feel a bit uncomfortable dropping in, she should just bite her tongue and get on with it because she should be putting her Father first.

    To me, it just sounds like she's trying to exercise a bit of control, without any responsibility, and that's not on.  I can understand she might feel that she has a right to a say, as it is her Father.  However, she's not offering you any alternative, and it's not fair that you should have to struggle on alone, when you need support as much as John does.

    Go with your gut, because we don't want you getting ill too.  Let us know how yopu get on.

    Take care, lots of love, Ann x

  • FormerMember
    FormerMember

    Madge, I am sending you the biggest biggest hug ever. I think you are doing exactly the right thing- it sounds ideal and lovely for you to have the company. I think Jo is probably annoyed that she isn't being seen to be the one helping...and that her nose will be put a little out of joint as she is his daugher and should be the one to be helping if you see what i mean.  I would suggest that you ask Nikki to speak to Jo and tell her she is welcome to come and go as she pleases and also to ask her if she could help in some way..(invent something if necessary) I think that would help a bit?

    But you must go to Nikki's for your and John's sake.

    Take your computer with you so we can keep in touch with you!! He may even be able to sit in the garden too???

    The biggest biggest hug to you

    Little My ((((((XXXXXMadgeXXXXX))))))))

  • FormerMember
    FormerMember

    My thoughts have been with you Madge although i haven`t been able to be on line very much.

    Staying at Nikki`s house sounds like a lifeline to me, I really think you need this, its been hard for you coping and worrying about John falling down those stairs. If you and John are happy with staying there then i think you should go as soon as you can.

    It will be lovely for you to have the support from your daughter and the space to be together and share time with visitors too..besides you could do with a bit of TLC :)

    Jo is probably feeling helpless because she can`t offer this kind of support for you both and shes feeling a bit out of control with things...this is not your fault Madge and I know shes been an angel to you, and Im sure she will come round to the idea when she sees its good for you and her Dad...she just needs a bit of time.

    I`d say Do it Madge (((((hugs)))))

    Love scarlet xxxxxx

  • FormerMember
    FormerMember

    Thank you so much.  I feel better already.

    Nikki is very easy going and has already invited Jo round for a chat to put her mind at rest.  I'm not sure why Jo is being like this after being so supportive for all these weeks.  She doesn't seem to realise how hard it is for me when she's not here.  She can walk away from it all but I have to face what's going on 24/7.  

    It will be wonderful to have access to a garden without having to trail up and down stairs with Gemma or to put out washing, rubbish, etc.  Wonderful too to have somebody there, for both of us.  And, as you say, John can go into the garden in his wheelchair when the weather is fine.  

    Nikki and her husband and my two grandchildren have always loved John and treat him as family.  The two grandchildren have known him all their lives (they are 13 and 11)  so he's like a grandfather to them.  

    Thank you for reassuring me.

    MacMillan are putting everything in place because we are moving into another area.  It is actually closer to where John's family live, including Jo, but the care package has to be changed and new equipment issued.

    Hopefully it won't be too long before John is discharged and hopefully his symptoms will be under control this time.  He is very poorly and finding it increasingly difficult to eat anything.  I love him so much and my heart is breaking to see him as he is now.  

    I just want him to be comfortable and to be able to give him all my attention and reassurance without feeling stressed out all the time.  

    Thank you again.  x x x x x

  • You and John are the most important people in this situation right now. Sorry if it offends, but his daughter has to learn it isn't all about her, it's about her dad and she needs to 'button it'.

    It never ceases to amaze me how selfish family members can be in these situations. We should all learn from your experiences.

    Cyber hugs,

    KateG