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Thread: Not Coping Well

  1. #1

    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

  2. #2
    Forum Member Barry52's Avatar
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    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.

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

  3. #3
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    welcome Broostine93, I agree with Barry you need some support, you cant do it alone

  4. #4
    Forum Member Lynne K's Avatar
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    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 ballance.
    I'm staying positive and taking each day as it comes.

  5. #5
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    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.

  6. #6
    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).

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