Update on my Mum

Firstly please forgive me I've not read ANY replies yet to my previous post

My mum is in intensive care!! She has been operated on and has had part of her bowel removed and bugger me she had a hernia too!! They operated on that at the same time, mum is ok but very tired! Dad is NOT ok and very distraught! Me well I'm f*****!!

Obviously care for Dad of some description has to be put in place but I need to think this over carefully, I am unfortunately thinking a nursing home!

Chc/CCG are wasters and can only offer me 2 more 4 hours slots a week or change agency for a live in carer....

I just feel drained, totally drained!! X

Ps I will just say this, I believe that Psp has not helped in my Mum becoming so very unwell, so please ALL carers listen up!! Don't and I mean don't make the mistakes we have!! Get all the help you can and get it now! My mum is NOT out of the woods yet and I'm scared for everything!! Don't be us!!!!!!!!!!!!!!!!!!

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  • Hi Amanda

    Hugs to you... This is dreadfully hard. You must be exhausted.

    Well you are amazing for getting anything out of CHC. You are a total fighter. Your parents would be proud of you if they only knew how effective you have been.

    Hugs again. Concerned and in your corner.



  • Ha ha Kevin only got the extra hours cos I threatened the chair and gave his name lol (thanks to you)!!

    Still I know I can't/won't cope so tomorrow or Monday the decision will be made re a nursing home πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“

    Bless you darling I'm concerned too!! X

  • πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“πŸ˜“

    We're here.

    You are amazing... If the S*** was going down for me I could not ask for a better champion.

    I know that means little given the loss you are facing on all sides.

    Liz sends special hugs as do I.


  • It means everything Kevin, knowing you are all there for us! Thank you from the very bottom of my heart x

  • Stay strong we are all thinking about you and your family and all send a big hug πŸ€—

  • I'm trying Tilly I'm trying x

  • Hang in there, Amanda.

    Its a nightmare but we are all thinking of you .

    Big, big hug from Jean xxxx

  • Thx you darling x

  • You've done so well and no doubt will carry on, your parents would be proud, you should be proud, you are their hero.


  • Bless you Helen thx you x





  • My heart aches for you and your parents.

    I know you don't want to lose your current carers. Would the live in carer be additional to them doing personal care calls or just this one live in carer doing it all alone?

    You all face some hard discussions and decisions. We are all here for you hunny to let off steam.

    Massive hugs xxx

  • Thx you Spiral I don't know about live in... would that disruption be good for mum? No, I doubt it! And I know mum will need total rest! X

  • If you do decide to go down live in carer route maybe see if you can keep one of other carers to do the double up personal care and breaks for the live in.

    You can tell the live in they have to be quiet & give space for your Mum to recover.

    You know your parents best and what you feel is best solution for you all, that includes you too.


  • Thx Spiral x

  • Amanda I know you don't want to change agency, but you could have a live in career, they would have to organise her/him 2 hour breaks and they would have to send someone in to double up with her for the calls? Does you dad have 2 careers per call? So they would have to organise that, plus you would be free to see your mum, and your dad would be in his own home. I know you don't want to get the new care company but think about it? Hope you mum is better soon, I so agree with about us careers keeping ourselves fit, this PSP is s**t takes away so much. Also sending you a big hug, I think you need it. Kevin is out saviour love you Kevin πŸ’•πŸ’•πŸ’•

  • Hi Yvonne yes we have 2 carers per call! I don't know what to do, jumping in front of a train seems most preferable right now! Sorry I know that sounds awful but I'm lost x

  • Amanda sit down take a breath and you will come up with what you need to do. How's your mum doing, hopefully your siblings are helping you make the right decision. Big hug breath and look after your self lovely lady. Yvonne xxx.

  • I don't know how mums doing today cos I doubt I'll be able to bloody go there but I know I can call, no comfort there really?! X

  • Amanda can't you get someone to come sit with your dad for a few hours? Oh I wished we could all help each other out xxxx

  • Amanda this truly is everyone's worse nightmare. I am so sorry for all of you. How long do you think your Mum will be in hospital?

    Dad poor man is another issue. Can you explain gently that you will have to take care of your Mum when she comes home and you need his help? Ask if he would go into a Nursing Home you have found which could care for him while you care for Mum? I don't know your Dad but if he thinks he's helping he might be more amenable? He would in fact be helping? He will need assurance that you will go to visit him but it's such a nightmare as under normal circumstances you would want to ensure he is cared for properly? Is there anyone who could do that or look after your Mum while you go to reassure him and make sure his care is good?

    I agree with you that PSP has caused this! I know I was almost on my knees at one point and started to get desperate about what we were going to do. I was warned by the doctor that carers often end up suffering worse than those they care for. Probably the only sensible thing she ever said!

    Your poor Mum must have kept a lot of heartache to herself? I pray that she will soon be well again and that this all works out for you. All my love to you.

    Marie x

  • Thx you Marie

    Minimum stay in hospital another week

    I like what you say about asking dad for his help

    See my next post πŸ˜“ X

  • Amanda

    How are things with you? Hope everything OK?

    Marie x

  • Hi Marie

    You want the truth?

    Bloody awful

    I crumbling bit by bit! I've found somewhere ie nursing home that looks good for respite for Dad, decision made!!!!!!

    I'm sick to the stomach with everything and coping badly, not impressed with myself at the moment, need urgent help! X

  • Hi Amanda, my simple answer to your cry for help, is scream very loudly to all. Glad you have made the desicion to take Dad to a nursing home, whilst your Mum is sick. Let everyone know, you can't cope any longer, no if's or but's.

    What would have happened if you weren't around? Your Dad would already be somewhere safe and people would be caring for your Mum. Systems are in place for this very scenario, don't let anybody tell you otherwise. I was told this, the first day I telephoned social services to say Steve had PSP and needed help.

    CHC will pay for your Dads care, they have to, they are responsible for his care. He might not get the nicest room in the home, but he will get the same care.

    Of course it seems as if you are not coping, but from what I am reading, you are doing alright. Your Mum's problems are being sorted and you have made the desicion to take your Dad to somewhere that can look after him, whilst you do the juggling act of visiting both your parents.

    You will overcome this and get them both back home, just make sure you are fit enough to be there, when they arrive back. That's means taking a break, sleeping and time out to breath. You can do it!!!

    Lots of love


  • Amanda, stay calm. It will work out alright.

    Your dad will survive. Tell him he is doing his bit for you all.

    Your mum will be better and you need sleep.

    Grab all the help you can.

    Love from Jean xxx

  • Amanda

    No way are you going to crumble! You are made of stronger stuff. Yes you will feel guilty. Anyone who has to put a loved one into a Care Home or Nursing Home feels terrible. It doesn't matter that if you don't take that decision you will all end up in hospital. Guilt follows us around even when you have done the best that you can.

    Amanda I really don't think there is any other way at the moment. I agree with what you said yesterday or the day before that PSP has caused your Mum to become ill. We don't want you to become ill too as then they will have nobody, and by the way we are very fond of you and would like to have you around for a while! So stop beating yourself up! That's an order! This can be sorted. You just need time and rest.

    Love and hugs to you.

    Marie x

  • I agree Marie

    The decision is made! I'm really starting to feel the toll myself now! I'm looking at somewhere which is a good hour away but has outstanding cqc report! And they've had a Psp patient before!!! Next problem will be space, will I like it when I see it (which won't be til Monday) cos I have no cover til then! Will chc agree? It's bloody expensive from Β£1400 a week!! The distance I suppose may be difficult but it sounds good, very good and I'd rather that than a shit place! How will they get dad out the house as currently have no hoist or wheelchair?! Who takes him there? Oh god I'm tired and that's half the bloody problem! Thx you so much Marie for all your kind words and advice! I love you all x

  • It sounds like a nightmare Amanda, you have to do what you think best for each parent as impossible to care for them both without full support. Hope you have your wonder woman outfit on! Hope you mum makes a speedy recovery.

    Love Kate xxx

  • That wonder woman cape is shredding fast Kate x

  • Hi

    I have learnt through this journey that you just have to make decisions to survive what is thrown at you, dad will be fine, us girls are strong , your mum is too ,

    Julie x

  • Thx Julie x

  • Hi, yout Dad going into a nursing home doesn't have to be permanent, just until your Mum is on her feet again. The live in Carer, does sound a good alternative though, as long as you are not expected to be the other Carer and have to cover their down time. When Steve use to go into respite, his carers were put on hold, but we always got them back again. Hope you sort this out quickly.

    Lots of love


  • Anne I am sure that if Amanda's dad has a double up during the day, the live in career will get someone to double up with her, it won't be Amanda doubling up. Yvonne xxxx

  • Let's hope not!!!

    How are you and George? You have been quiet recently.

    Lots of love Anne

  • Anne we are ok , George has had another urine infection, he was suppose to have a super pubic catheter, but he does not want to have it done, we have been trying since last year to have it done, but he keeps on saying he doesn't want it, I have spoken to the children, they are not really saying much, I think he can still make up his own mind, I should respect it, just feel under pressure from hospital, but if it was me I would want everyone to respect my wishes. Anne Zooey to ramble on but all this is stressing me out. I am away for a week in May with my sister in law, my lovely brother is coming to stay. Anne how are you? Xxxx

  • Hi Yvonne, I can't say I blame George. Don't think I would want one either. Surely the risk of infection is just the same. The hospital should be respecting his wishes, although I suppose they feel there is only so many times they can give him antibiotics. Can they not give him a regular low dose, just to keep any infection at bay? Or is that too easy????

    Where are you off to in May? I'm going to Gran Canaria for a long weekend in May, with my daughter. Trying to pluck up the courage to book a holiday on a singles only group. They are stupidly expensive, so looking for one that really appeals to me and sod the cost! My problem is, I can't look to the future yet, so don't want to commit to anything more than a couple of months in front. Had a very flat week, hopefully will pick up, as its my nieces wedding next Saturday, so will have plenty to keep me busy.

    Hope George feels better soon.

    Sending big hug and much love

    Lots of love


  • He is on antibiotics, does not make a lot of difference. We are going on a cruise to holland looking forward to it. I love Gran Canaries, hope you have a lovely time. My friend doesn't mind going on holiday by herself, we loose touch with friends thanks to PSP. Oh Anne we all look after our loved ones, we are so tired and grumpy, and think there is life after PSP, but I can imagine how hard to is after they have gone, sending you a big hug, it was a good move getting a dog. At least you have company. Big hug Yvonne xxxxx

  • I don't even know what to say to all this. Just hang in there. I know we all do what we have to do. This is all horrible stuff to deal with. Hope you find answers and all turns out well. Maybe try and get someone to give you a break so you can take a little time for yourself and clear you head and so you can think clearly and make your decisions. Take care and remember that you have all this support on here.

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