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Thread: Tired of caring

  1. #11
    Forum Member Newbie17's Avatar
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    I'm so sorry to hear of your troubles Nightowl.
    Always good advice on this forum.
    I hope you get all the help you need and soon.
    Big hug for you x

  2. #12
    Forum Member Ellie's Avatar
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    Hi Tania,

    Sorry your mother is having such a hard time at the moment.

    It's not unusual that a care company need notice of a client's discharge from hospital to allow them to rejig their staff rosters.

    Good to hear that your mum will soon be home. Co-codamol causes constipation, so she needs to take laxatives to keep her bowels moving. She must be uncomfortable going just once a week.

    Catheters are usually changed monthly but some need to be changed less often. Sometimes there is a higher risk of UTIs in people with catheters than those without one.

    Did you manage to get your mum into Day Hospice to give you one free day a week?

    Hope Monday goes smoothly.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  3. #13
    Forum Member Streetwise's Avatar
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    let's say I got to know one neighbour very well!!!! as I never thought she (my mam)would get to the point where we needed help !!!in 1997 I had no idea what M.N.D did to the physical body!!!! there was no information in the first couple of months !until we went to the library! and looked at the Oxford medical dictionary !from which my mam diagnosed herself !!!!! our local hospital was and still is useless !!!!!.

  4. #14
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    Hi there It's every 12 week they change the catheter. I only know this as my husband has one and I just rang up to see when they were coming . The nurses just ordered the leg and overnight bags . Hope things work out for you x

  5. #15
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    Quote Originally Posted by Ellie View Post
    I'm so sorry you've got so much on your shoulders Night Owl - it's no wonder you're at breaking point. As Susan said, you will be no use to anyone if you get ill and all concerned, including your mum, must be told how fragile you are.

    To add to Terry and Susan's wise advice:
    Get in contact with your local hospice - most offer day hospice, so your mum could go once a week and get input from nurses, counselling (for you too) physio, OT and complementary therapies. They may offer 1-2 weeks of respite too.

    On a practical level, overnight continuous feeding with a pump (programmed to give a set amount of feed over whatever number of hours suit you) would mean no need for you feeding her during the day.
    Do any of her meds come in liquid form or patches?

    Do ring MND Connect.

    Sending you a big hug,
    Love Ellie.
    Hi mam wonít go to day centre Iím trying to work on her for restbite in the school holidays
    No liquid form all tablets to be crushed & painkillers , the pain patch is the lowest one
    Iím hoping to see dietician soon to get her on feeding overnight instead of the drinks through the peg
    Thank you for the advice

  6. #16
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    Quote Originally Posted by Ellie View Post
    Hi Tania,

    Sorry your mother is having such a hard time at the moment.

    It's not unusual that a care company need notice of a client's discharge from hospital to allow them to rejig their staff rosters.

    Good to hear that your mum will soon be home. Co-codamol causes constipation, so she needs to take laxatives to keep her bowels moving. She must be uncomfortable going just once a week.

    Catheters are usually changed monthly but some need to be changed less often. Sometimes there is a higher risk of UTIs in people with catheters than those without one.

    Did you manage to get your mum into Day Hospice to give you one free day a week?

    Hope Monday goes smoothly.

    Love Ellie.
    Hi she is on senacot every night
    Mam won’t go into the day hospice
    Mams cathertar got to be changed every 28 days plus I got to change the leg bag every week & re order bags supply’s so that’s something else for me to do as the distrect nurses who come only want to check mams bottom for pressure areas
    She has already had her Cather changed cause she was bypassing but when I rang the distrect nurses up she said just keep pushing fluids with mam , it really annoyed me when I said she’s bypassing & tube blocked she tried to palm me off
    Distrect nurses in my area don’t seem to do a lot

  7. #17
    Forum Member Ellie's Avatar
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    Honestly Tania, you should NOT have to carry all of this on your own - you've young kids on top of trying to single handedly care for the complex needs of your mother. Sorry the District Nurse is useless Also, Senokot isn't enough for fighting codeine (and immobility) induced constipation - at the very least a stool softener needs to be added or just use Movicol. Of course, the District Nurse should be on top of this but...

    You need support, and fast. Medical/Nursing support - is there Macmillan in your area or maybe her hospice has a homecare service? I know your mum says no to Day Hospice, but sometimes we all have to do things we don't want to for the betterment of a situation. She needs to know you're struggling and that by going she'll get nursing care and you'll get essential down time. (If she doesn't go she's being selfish, I know that sounds harsh - sorry)

    You need to think of your own health & well being too. If you find yourself unable to care for her, your mum will have no option but to go into a care home or hospital.

    Please ring the MND Helpline Tania, they're there to give you advice and comfort.

    0808 802 6262 Monday to Friday between 9am to 5pm and 7pm to 10:30pm

    I wish I could do more to help you!

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  8. #18
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    Hi Tania
    Sorry to hear mum has been in hospital. I hope things have settled.
    Regarding carers giving medication, you really need to ask for a review on mumís package of care.
    Mum needs a complex care package, domicillary care providers isnít sufficient.
    They will take care of all mums clinical needs..

    Iím trying to get use to the forum email, I donít know if this is a old message.

    Itís good you contacted the District Nurse.

    I pray you get all the help you need

    You need a referral to the speech therapist
    The MND Nurse can refer your mum or I think your Gp or district Nurse can also.

    This is my email address if you wish to use it

    dena_m4gk@yahoo.co.uk

    Speak soon

  9. #19
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    Hi Nightowl, in this country people assume that if you are terminally ill help will be given, it's only when you find yourself in this position you find help is means tested. My wife has MND and we have a young son. I don't have thousands of pounds in the bank but I have a good job and small holding to produce food as part of my retirement plan. So unless I lose my job and sell my land no help will be given. I'm nearly 50 I've worked and paid taxes all my life, how am I then supposed to provide for my son and myself, it's so short sighted of the state. Help now would make such a long term difference but none will be given. So I struggle on, trying to keep my job, care for my wife and be a father for my son. I hope I can continue to the point where CHC steps in, but I've injured by back lifting so it keeps getting harder and harder. I feel continuously torn between caring for my wife and doing something with my son, I can save my wife and I can't be the Dad I always wanted to be. My wife is suffering and my son's childhood is passing by and there is nothing I can do.

  10. #20
    Forum Member Terry's Avatar
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    Hi Andy and welcome to the forum;

    Just to continue your sort of moan, if you are above their fresh hold, you and your wife will probably not get the same quality of life. I can't get into any clubs/daycenters without paying nearly £60 a day where others get it free and sometimes can go a few times every week.

    To get a weeks rest for her costs around £900 where some others get it free.

    This means that my wife does not get the amount of free time (well that's a joke) that is needed unless she spends her pension monies.

    So I don't do as much interesting things and wife does not get time for herself.

    I guess on the plus side is that I can get a better wheelchair.

    I guess life is just not fair.

    Best wishes, Terry

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