No announcement yet.

Not Coping Well

  • Filter
  • Time
  • Show
Clear All
new posts

    Not Coping Well

    Hi Everyone,

    I am posting here because I am hoping someone can give me some advice.
    My Gran (80 this year) was diagnosed with ALS last month, after showing symptoms for a year. She has drop foot on her left side and has recently lost most of the strength in her left leg. Her speech is deteriorating also (she's slurry and mixes up words quite a lot). I also think that her decision-making and general ability to deal with 'life's issues' are also impaired, but this is just an observation that I have noted over the last month or so.
    I work full-time, but I go to see my Gran for, on average, 2 hours per day after work and usually longer for at least one day over the weekend to do the 'bigger' household tasks and the like. I would do anything for my Gran- she is the only family member I have left that I feel close to, so of course I am trying my best for her. However, I am absolutely mentally exhausted. I am managing all of the appointments, arranging delivery and receipt of these deliveries for aids/equipment, doing all the housework tasks, doing her food shopping a couple of times a week, helping her get herself ready for bed every day and also still trying to maintain a grand-daughter/grandmother relationship. I am failing at this latter part.
    I am really trying my best and I'm offering suggestions of things that can help or ways to work around things she struggles with and even trying to get other family members on board to try and share some of the caring duties (or even just taking her out because, presently, she's not going anywhere), but all of this is being slapped down as soon as the words are out of my mouth- either by Gran herself or by relatives not being available to help. When this is happening, my Gran tries to make conversation with me, but I am so frustrated with the situation/her attitude towards me and everything else/others' unwillingness to help, I am not doing very well at hiding how I feel and I know my foul mood is making her feel worse, but I can't stop myself.
    By the time I get home, it is too late for me to see anyone else or do anything else and I am so wound up that I just unleash my frustration in a flurry of words on my fiance for at least an hour when I get home. Thankfully, the hospital set up a morning carer to get my Gran out of bed/dressed/washed/breakfast etc. (although, she rarely lets them get her out of bed or wash her, as she'd rather struggle than lose that dignity). What I really think would help would be to have an evening carer that does the exact same as the morning one, in reverse. I tried to get this across, as nicely as I could so as not to upset my Gran, and she said 'I expect I'll need it eventually', but she seems to only accept professional help like this when she's told to have it by professionals, so I don't know how long I'll be waiting for this to be put in place.
    We have not yet been assigned an MND nurse and our first meeting with the multi-disciplinary team at the local Myton Hospice isn't until 1st May.
    I am terrified that my Gran is going to explode at me if I keep trying to get her to accept help from people other than me (funnily enough, it was a similar explosion that eventually caused her to admit she needed to go to hospital to find out what was wrong with her). She's nearly 80, but the woman can shout when she wants to!
    I am also acutely aware that I am pushing everyone else away because this situation is causing me so much stress and upset. I obviously know what's coming, which is upsetting enough, but having to watch my Gran die just a little bit more every day, whilst seemingly doing nothing to help herself live/cope is too much to bear. I actually felt suicidal over the last 2 weeks.
    I wonder if anyone can give me some tips or just share some similar experiences so I can try and do the right thing. I really don't want to feel the guilt that is sure to come upon my Gran's passing, by thinking I could have done more, but, equally, I can't carry on like this because it's killing me that I've got no life outside of her and work.
    Thank you all
    "This, too, shall pass"

    Hello Broostine93 and welcome to the forum.

    I’m sorry to hear about your gran and from what you have said you appear to be doing a wonderful job of caring for her.

    MND can affect cognitive functions and there is one type called frontotemporal which behaves like dementia. I’m not suggesting your gran has this but the clinicians should be able to identify it.

    I suggest you contact MNDA connect who may be able to expedite the nursing process. They may also point you to counselling which is often offered by the hospice. Of course your welfare is important as the main family carer and I am concerned that you mentioned suicidal thoughts.

    Can you pressure gran’s GP to speed up the care planning? She may qualify for continuing health care (CHC) which will take a lot of pressure off you. From a practical point do the shopping online as many retailers will pack the food away in a fridge.

    You need someone to vent to but try to be gentle with your fiancé and remember if your gran is giving you a hard time it is often the frustration of coping with the disease that is to blame.

    I hope you get the support needed and I wish you well.

    I’m going to do this even if it kills me!


      welcome Broostine93, I agree with Barry you need some support, you cant do it alone


        Hi Broostine93. Barry has given you very good advice. You have obviously been burned out by your work day, caring for Gran and having very little time for yourself. Something needs to change. I hope that your fiance understands how you are feeling, but if not he needs to hear it. Talking is very important. He'll be there when your Gran no longer is. So it's important to nurture one another. Maybe promise yourself and your fiance a night or two away to re-charge your batteries and heal any tension between you. Obviously this won't be possible unless a couple of days respite care for your Grandma can be organised. If there's an MNDA Support Worker in your area that would potentially lift some worry from you and they could help you navigate the care minefield. Take care, Lynne
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.


          I wonder if there is an organization that supports carers where you are? (There are several here that are brilliant). Because the first thing is to look after yourself in order that you can help your gran more effectively. Although they may not have much MND experience, many of the issues you face are common. Try googling.
          Then can you self-refer to an OT on gran's behalf? I've found in terms of the practical stuff these are invaluable. Tell them it's an emergency, because it is if she and you aren't coping. Or social work? MND can progess fast and May 1 must seem a long way off.
          I am sorry and can only hope things improve as you get more support.


            Hi All,

            Thank you all so much for your kind words and supportive comments.
            The GP said that Gran can come to him for her prescriptions and any other 'normal' issues, but said she must liaise with her specialist team for anything MND-related, so I don't believe he has any influence over her care package.
            My fiance is probably the most tolerant of men in the world- he knows and understands why I'm so upset all the time and he does try and take my mind off it all when he can. I do believe, in spite of all that is happening, it's making our relationship stronger, if nothing else.
            I did contemplate the online shopping, but for the amount she's asking me to go and get on a weekly basis lately, it's not worth it- I am just trying to add it in with my own shopping now and it seems to be working okay for the time-being.
            We do have an OT in place and they have been great at providing equipment/aids- I can't fault them for the way they're now observing and putting practical things in place for my Gran.
            I really would just like to have a professional come in and 'head-up' the overall healthcare for my Gran (as of yet, I've had 0 professionals even tell me personally what the condition is- they've only liaised with my Gran directly, which I find a bit ridiculous, considering I'm the one who's having to deal with all the admin and the practical things on a day-to-day basis). My Gran seems to listen to the things her doctors/nurses/medical staff say, but she does not listen to the family's advice (especially regarding getting further carers in place). I do believe she is waiting for the professional body to tell her when it's time to get more professional help in and, as kd1 says, May 1st is a long time to wait for the next appointment to see these professionals. Until this happens, as Lynne K says, I cannot have any respite myself because there is not yet anyone available to take my place when I am gone (and, honestly, I do think my Gran would feel I've abandoned her if I take this respite for a few days).
            "This, too, shall pass"


              one thing get an account with tesco as they give you a choice to substitute if they dont have the first thing you want none of the others do this ,the others just give you there choice which is a lottery ,with Sainsbury's


                part 2 Sainsburys let you tick in the substitutes box (which is on the checkout page )which you dont want substituting morrisons dont let you tell them beforehand but you can send unwanted items back and get a refund i dont know about ocado ,iceland dont give you a choice but!!!they let you spend £35 and you get free delivery with the others its £40 and you pay delivery on top ,but you can pick aone hour slot with the others from 7am until 10 for sainsburys and i think morrisons and tesco,iceland is just a two hour slot


                  Hi Guys,

                  Big updates regarding my Gran's situation. We had a terrible time with the care company that were doing 4 visits per day. Gran, understandably, didn't want to have to explain to a new care company all over again on how to perform the daily tasks/struggles (potentially only to find that they were just as clueless as the majority of the carers from the last company). Together, we made the horrible decision for her to move into a nearby Nursing Home. The move happened on Saturday via a fast-track application from NHS Continuing Healthcare.
                  First impressions weren't great- it seems the weekend staff weren't really informed of much, but I suspect this was due to the fast-tracking (info simply can't pass down the grapevine over the course of a couple of days).
                  Aside from an ear infection and an eye infection, my Gran was getting to grips with the new reality/routine (although, doesn't particularly like her room, nor some of the Nursing Home staff due to some of them being a bit abrupt- nothing major to worry about, as it's very early days).
                  Tuesday night, her ability to exhale almost completely vanished- I believe that a nebuliser has been ordered and will be delivered today.
                  Thing is, Gran was due to have a PEG fitted in a few weeks' time- surely this now means the op can't go ahead if her breathing has started to fail her? Can anyone shed any light on this?
                  She's said from the beginning that she didn't want to have the more invasive/constant breathing assistance apparatus- sorry to ask, but does this then mean that this is now the 'beginning of the end' for her? (an almost impossible question, I know, but I am panicking).
                  S&L from the Nursing Home came out today and have done some voice banking (though her speech is extremely poor, so not sure how much good it will be?)
                  Just looking for any of you lovely people who have been through this part of the progression before or seen someone who has- as always, it's just reassuring to know what to expect next.

                  Thanks all!
                  "This, too, shall pass"


                    Hi Chrissie.

                    Sorry to hear your Gran has been moved to a nursing home but glad it's nearby. I mean this in a nice way, but I'm glad too that it relieves you of providing care for the times her carers weren 't there.

                    I agree when you say it'll take a while for the nursing home staff to get to know your gran, and vice-versa, so hopefully things will improve there.

                    So as your gran doesn't have to keep explaining things to the staff, maybe you and she can do up some "instruction pages" and put them on the bathroom and bedroom walls until staff get used to how she likes being washed, dressed, settled in bed etc.? I'm sure they've a Care Plan for her in a folder somewhere but tbh, am sure the daily carers don't have the time to flick through it, but if there were bullet points on the wall for them to see, they might be looked at.

                    Re breathing: It's a good idea to be checked for a chest infection but if her breathing has deteriorated, yes, it *may* impacted on having a feeding tube fitted by PEG procedure, but maybe she could have it fitted by a RIG procedure. She would need to be assessed.
                    However, she may have been unusally tired or stressed on Tuesday for her to lose puff, or it may be an infection.

                    Re voice banking: Poor recordings generally give poor final results but maybe there is enough of gran's voice to mix with the synthesised voice as to make it recognisable.

                    It's really hard to know what the next few months holds for your beloved Gran, Chrissie. If she has her breathing assessed, then you'd know if a feeding tube is possible, and that could give you a bit more clarification.

                    Big hug to you.

                    Love Ellie.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


                      Hi Ellie,

                      Thank you for everything you said above. I know what you mean RE giving me a breather from worrying about caring for her.

                      RE breathing- she has a sleep test done last night and it's bad news. Seems that she has a minor chest infection, but also she has apparently gone into the beginnings of respiratory failure. Unfortunately, that does mean she won't be suitable for the PEG procedure according to the specialists.

                      From the start, she said she didn't want the NIV so I don't really know what that means for us- I'm fearing that we only have a short time left.

                      Can't concentrate at work now- far too upset
                      "This, too, shall pass"


                        Hi Broostine

                        Originally posted by Broostine93 View Post
                        but also she has apparently gone into the beginnings of respiratory failure(
                        I quite understand why you are upset - a diagnosis of motor neurone disease always upsetting both to the person living through it and the person supporting them.

                        Do you happen to know what the check on her respiratory system said?

                        In case you do not know this is usually measured by the comparison between the person standing up and the person lying down because as when you are lying down the muscles that assist your breathing when you are standing up, do not act so it isolates the function of the diaphragm, and tells you how much damage there is.

                        Stay strong if you can



                        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

                        "Things turn out the best for people who make the best of the way things turn out"


                          Hi Nunhead,

                          Unfortunately not- I was at work when the respiratory specialist was there to give results- it's the kind of thing my Gran wouldn't think to remember to tell me about afterwards. Regardless, they wouldn't be able to do any test of her standing up as she can only stand for about 2 seconds (just long enough to transfer from wheelchair/commode to bed and vice versa before her legs give way. Just very worried about how long we have left with her now
                          "This, too, shall pass"


                            Hi Chrissie,

                            I was sorry to read on another thread that your poor Gran is confined to bed due to pain in her peroneal nerve

                            Has the care home not got any riser-recliner armchairs in the lounge where she can put up her legs and at least have the company of the other residents?

                            Is she taking Gabapentin, or similar, for the nerve pain? At this stage, her quality of life is paramount so even if taking Diazepam eases her pain, she should think about taking small doses of it if her muscles are in spasm. (Benzos can depress breathing)

                            Take care.

                            Love Ellie.
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


                              Hi Chrissie. I agree with Ellie. Your grans quality of life is paramount and being in the same room every moment of every day, is more than cruel. If she can get onto a commode, surely she could get into a decent wheelchair. That's one with whole body support and tilting to make her comfy. Then as Ellie says she could go in to the lounge for company and maybe some tv watching, or other entertainment. She could also go outside in their garden (hopefully they have one) for some fresh air on a warm dry day. Maybe speak to the manager of the care home about getting her out of her room and her mnd team about medication that would ease peroneal nerve and other pains. Good luck. Ring MNDA if you need help. Lynne
                              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                              I'm staying positive and taking each day as it comes.