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Thread: Tired of caring

  1. #1

    Tired of caring

    Hi as the thread states Iím so tired & exhausted from caring for mam I know she canít help it but I just canít keep going I have 3 kids with the youngest being 2 & hardwork having a toddler & I work 1 11 night shift a week trying to run & keep the house clean is hard Iím thinking Iím on the verge to crack up
    Mams carers comes 3 times a day 10.40 in morning to wash her but mam wonít stay in bed until they come so I get her up on my & struggling lately as she is stiff & cant sit or help to put sling on
    Then they come at 2 ish to toilet her & then 9.45 to put her to bed , Iím great full for the little help but they donít make bed , hot drinks or nothing
    So Iím constantly crushing tablets to put in peg , pushing e sure drinks through peg
    Putting up her feet up / down
    Getting up & down to wipe nose move hand , take blanket on / off all the time move her foot forward back
    Cleaning her peg daily cause Distrect nurses donít touch it they only visit once a fortnight
    Taking phone calls all the time for her chasing up her prescription drinks from chemist & drs renewing pain patch & salvia patch Iím just knackered the list goes on
    So what point does people with mnd get chc ? Is it a postcode thing
    Or even respite who decides that ? Or is it at a certain stage people get it
    I donít think she would like it but I canít cope no more I canít leave the house only to go to work on a Saturday night & itís not fair on my kids
    I just donít know where to turn & want to cry

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Nightowl and sorry for not replying early;

    I can totally, well nearly, what you are going through. Turn to Mnda connect and ask them for advise and if they can sort it out. Because if you phone people they ask you so many questions and you spend an hour on the phone just to find they can't do anything.

    Don't know if Mum has a Neuro Nurse or if she has contacts with the hospice. Hospices used to offer respite but many now don't but they might sort out more care for her and CHC. It sounds like she would probably qualify for that now.

    Also a Mnda visitor could be of some help but that very much depends on who you get.

    Hugs, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Hi thanks for replying no Nero nurse , the physio has put in touch with an macillian nurse but she cancelled twice , we had a end of life care plan started other week where mam said she didn’t want to go into hospital at the end but I think she would have to cause of my kids ,
    It’s been hard 2 weeks with kids holidays
    I just hope I can try & talk mam around for respite for the 6 weeks holidays if it was only a week
    I know it’s not mams fault but it’s too much for me to try & do everything,
    I would like to know how other people manage it
    She is having her blood gases done next week with an overnight study , can they tell from the results if she’s going down hill & how long she got left she was diagnosed in aug 2016 with 3-4 years I just hate her suffering from this horrible disease

  4. #4
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Nightowl,

    I would try to express how stressed/overworked you are to the macillian nurse.

    Try mnda connect as I think that they would chase them up for you and have a bit more clout.

    Good luck, Terry

  5. #5
    Quote Originally Posted by Terry View Post
    Hi Nightowl,

    I would try to express how stressed/overworked you are to the macillian nurse.

    Try mnda connect as I think that they would chase them up for you and have a bit more clout.

    Good luck, Terry
    Do you have a contact number for the Macmillan service? Even if your specific nurse is not available I found there was always another member of the team who would listen and advise. You also need to speak to your GP. It might seem a cliche but it is imperative that you take care of your own health, both emotional and physical, first otherwise the whole system crashes. It is useful to involve your mother in the discussion so that she feels she can contribute possibly by staying in bed longer but this may be better with a third party so that clear guidelines can be established without her being made to feel responsible. The issue is the dreadful illness.

    if your carers are not satisfactory it might be possible to change them. We did this and the whole of ethos of the new agency was geared to my husband's needs and making life easier for me. It made a world of difference. We also had someone from the Carer's Trust for 3 hours a week. Their role is to release the carer allowing you to look after yourself in whatever way is best.

    Use the forum to rant. Everyone here understands and can often offer practical help as well as general support.
    Good luck.

  6. #6
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    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.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #7
    Forum Member
    Join Date
    Jan 2018
    get assessed again, district nurse in for med and carers to do meals. I have carers four times a day and my wife works and we have a 1 year old. yes I get an itch but I have also learnt to have patience. you deserve a life as well.

  8. #8
    Forum Member
    Join Date
    Dec 2016
    Norwich, UK
    We were moved to CHC when my mate got her RIG. It then became more medical than social support.

    It took some arguing, but she has 24/7 awake care, plus an agency sends a carer in 4 times a day as double-up to help with the things that the need 2 people. Our 24/7 care is made up of 2 carers hired directly by us, and a few carers provided by a top notch agency. Although we will eventually move to 100% direct hire carers (funded by the CHC of course).

    Like I say, it took some arguing back and forth to get this, but it was possible.

    Granted, my mate is bed bound, 100% loss of use of limbs, no speech, very little head movement, and nearly always on the NIV.

    Before this, I was in a similar situation, where I was doing a bulk of the caring on my own, or sometimes with a 2nd carer. I've lost my company, my job, my career and have sold about 90% of my possessions just to pay bills. I'm eyebrow deep in debt. I've largely lost everything in exchange for caring for my housemate and best friend.

    But, it is getting better, and I hope to have a job soon.

    A year ago I was describing my life as 'overwhelmed', then it progressed to 'devastated'. This year I've started using the phrase 'totally decimated' to describe how this has impacted me. From what I understand though, that's pretty normal for the people caring for someone with MND. It's horrific, but apparently normal.

    Hanging in there, one day at a time.

  9. #9
    Forum Member
    Join Date
    Aug 2017
    Hi Nightowl2016, everyone has been so amazing, giving advice. I don’t think there is anything more I can say. I have been there, and know exactly how you must be feeling. I don’t come on the forum much. My heart went out to you when I read your message. I reached breaking point and I remember sitting on my step, almost in tears, too afraid to cry. Then i picked the phone up. And called social services and said I couldn’t cope. It was all too much for me, I needed to rest.
    You have small children who need you.
    You need to ask for mum’s package of care to be reviewed and it’s now impacting on you. Your mum and Family.
    Your Gp, MND Nurse, Physio and OT can all help sort this out
    Call social services, I didn’t wait for anyone, I needed help now!
    You need more care support
    The MND connect are also a good place to start. They maybe able to organise an associate visitor someone to talk too, will sit with you for a few hours a week, and a contact on the phone.
    I hope you are able to get the extra help you need.
    Your mum can also request financial support to have massages which is very therapeutic my husband enjoys this.
    All of this the MND team can sort out for you, call them and request a home visit.
    Good luck

  10. #10
    Wow thank you all for your advice it is greatly appreciated & I am starting to sort things out slowly spoke to a family meme we how I felt ,
    On Tuesday Mam had pain all down her side when distrect nurse called to check her bum , I had already given 2 lots of cocodomal & she said give u some nuerfon tablets , I said I will now but it 11.25 & I had to leave to pick my toddler up from playgroup she goes twice a week , so I asked the nurse if she could give tablets & she said I’m not allowed !!
    Anyway I called dr out who done a letter for Mam to go into hospital to find what was causing pain she had a ct scan which showed she was retraining water & peg was infected
    So today hospital rang to say she could come home , I rang the care provider to say can I have the carers back & she said no chance 48 hours notice & demanded to know what ward Mam was on .
    Next thing hospital rang said she will have to stay in till Monday now , it’s really not fair some1 else could have that bed
    I spoke to the nurse tonight as mam got catheter in & mam was trying to say something which I couldn’t understand is that she got to have long term catheter in
    I’m wondering how often the nurses check on catheter?
    It also bothers me if the carers will try & skip putting her on commode now cause of the catheter even though mams bowel movements are only once a week
    Thank you all for letting me vent on & here & ask questions all the time I don’t know how I would manage without this forum
    Thanks Tania

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