Grandma Just Diagnosed

[Broostine93]

Hi Everyone,

I'm Chrissie, 25 years old and very concerned about my Grandma, who has just been diagnosed with MND (we're yet to be told which version, as she is currently still in hospital, being monitored).
We first noticed symptoms in May of last year in the form of drop foot (which we put down to a fall that my Grandma had in the February before, as she slipped on some black ice). Over the last couple of months, she had been complaining that her bones hurt all over and she had the added symptom of emotional liability (I initially put the crying down to grief, as we lost my Mum, my Grandma's brother and sister-in-law within the space of 18 months).
However, things came to a head on Monday of last week and we finally concluded that she needed to go to A&E, as she did not feel safe on her own at home (dizziness, falling etc.)
We had the diagnoses (90% chance, so they say) of MND on Friday of last week.
Up until this point, I had been doing my Grandma's shopping, some housework and trying (with quite a lot of difficulty) to get her out of the house.
As the symptoms are only going to get worse (i.e. she's now having trouble swallowing and her voice is quite raspy at times and I've noticed her handwriting is starting to suffer a little), I am now terrified about the future in the fact that I don't feel capable of providing proper care.
The hospital asked her if she wants me to help her get out of bed each morning or if she wants a carer in to do it. She leaned towards asking me because I think she's worried about strangers coming into her home/having a key to her home, which I understand. However, I work full-time and, though my workplace has been extremely understanding, I don't want to give it up. Thinking about the way this disease progresses in the most logical manner I can, I don't want to make my whole 'purpose' in life about MND care because, when the inevitable happens, I will be a complete wreck and won't be able to pick myself back up- I feel I need my work to stay sane, if that makes sense.
Has anyone else had any relatives with MND that are opposed to getting the care they need from a 'proper carer'?
I'd appreciate any information anyone has to give- knowledge is power, as they say.

[Terry]

Hi Chrissie and welcome to the forum;

Sorry to hear about your grandma's diagnoses, it must be a total shock.

I would be tempted to push for carers, (especially if she can get them free), because it leaves able to see her at other times and help out, being a friend. Also as her needs grow the bases is already in place and it will save both of you further emotional torment.

I guess she's been prescribed a drug to help with emotional troubles. You can also get talking apps for tablets and I Pads.

She also needs a OT to get walking aids and grab handles etc sorted.

Best wishes, Terry

[Broostine93]

Hi Terry,

I think I was the only one who wasn't shocked by the diagnosis- I'd been trying to read up on her symptoms since she started having them and I came across MND only a month ago- everything fit, but I wished that it was something (anything!) else. I didn't say anything to my Grandma at the time, as I didn't want to scare her.
I don't know what the hospital are giving her at the moment- only one member of the medical team at the hospital has spoken to me the whole time she's been in there and that was only to ask me about the getting out of bed thing.
I do believe that there is going to be a meeting with the whole team + me before they let my Grandma go home, but even that I had to hear from my Grandma, not a medical professional.
It's not setting a very good precedent for future care, if I'm honest.
I had the delivery today of the toilet raisers and we already had a different OT out a month or so ago for a walking frame, grabber etc. Just waiting on the correct chair raisers, as the incorrect ones were delivered today.

[Ellie]

Welcome to the Forum Chrissie.

I'm sorry for what you and your Grandma have been through in the last 18-24 months, it must be taking its toll.

You're very young Chrissie and although I'm sure you're very close to your Grandma, I too would urge you to use outside carers to look after your Grandma. That's not to say you're not up to the job nor don't want to do it, you can still be involved in your free time - caring for a person with MND often turns into a full-time job.

Maybe ask to see the hospital Social Worker before the meeting - there *ought to be* some form of care plan discussed before your Grandma is discharged. Does she live alone?

Look after yourself.

Love Ellie.

[Broostine93]

Hi Ellie,

Thank you- it's nice to be able to talk to others in the same boat about all of this.

I want to use outside carers, but, as my Grandma doesn't seem to want to use them, I'm really trying to do 'the right thing'- I don't want to force her to do anything she doesn't want to do, but, at the same time (and as you say) it does turn into a full-time job and I really don't think I have the strength (physically or emotionally) to do it by myself.

I wasn't aware that there was such a thing as a hospital social worker so thank you for letting me know!

She does live alone, but, fortunately, I live only a couple of streets away.

Thanks, Ellie!

[Kayleigh]

Hello Chissie and welcome to the forum,

I'm sorry to hear of your Grandma's diagnosis, and that your mum and other close members of your family have passed away recently.

This must be a particularly difficult time for you - I think that you are being wonderfully brave and strong for being able to help and support your Grandma so much.

Don't feel guilty about needing and wanting to work full-time, rather than dedicating all your time to your Grandma. I was diagnosed last year, and both me and my husband are at least more than a decade younger than normal retirement age. I am too unwell to work, but my husband continues to work full time, out of financial necessity but also for his own well-being - and probably his sanity!

Although this diagnosis is devastating, I try to make the most of every day and I try to spend as much quality time as possible with my loved ones. It would be unrealistic and unfair of me to expect my family to devote all their time and energy to me - they still need to go to work and school etc and socialise with their friends.

It is interesting that the hospital asked your Grandma if she would like you or carers to help her get out of bed in the morning. It's sounds like the hospital has already presumed you have voluntered yourself 'officially' as an unpaid carer, who is able to look after your Grandma for a certain amount of time every morning. It's wonderful that you like visiting your Grandma and helping her with things, but be careful that the hospital doesn't factor in your time when they are devising a care plan for her - unless you want them to.

I agree with Terry and Ellie, that from a practical and realistic point of view, your Grandma's care should, ideally, be provided by carers. If you volunteer yourself to get your Grandma out of bed on a regular basis, then I don't know what would happen if you were unable to do this unexpectedidly eg. if you had a bad cold. If your Grandma had carers, then there should be peace of mind that if her regular carers weren't available, the care agency would provide other carers to cover their duties.

You are a wonderful granddaughter for caring about your Grandma so much, and for wanting to make sure she gets all the care she needs, so that she is as comfortable and as safe as possible in her home.

There is nothing wrong with wanting to spend quality time with your Grandma as her granddaughter, rather than as her carer. If she has carers meeting her care needs, then you will still be able to visit her, whenever you wish to, and hopefully you will both be able to enjoy lots of quality time together.

If you haven't done so already, you may wish to contact your local Mnd Regional Care Development Adviser, to get advice about the provision of carers and equipment etc. The Advisers are very friendly and extremely supportive of MND patients and their families. A link to further information about them is provided below:-

http://https://www.mndassociation.org/getting-support/mnd-regional-care-development-advisers/

Love and best wishes to you and your lovely Grandma,
Kayleigh x

[Deb]

Hi Chrissie and welcome to the forum. I am so very sorry for your Grandma's diagnosis.

Your family has had such an awful time recently... you must feel overwhelmed with everything. I really hope you have love and support around you and that you are not trying to make really difficult decisions alone. I know it must be hard but you are very young and you need to work and if your Grandma has carers you can be round to visit and bring her cheer and treats.

There should be a care package in place before your Grandma comes home so it does not become an emergency. My mum was very poorly a few years ago ( not MND related ) and they wouldn't let her home without it.

Your Grandma is lucky to have such a caring granddaughter .
Take care of yourself too.
Love Debbie x

[shrew]

Hi Chrissie Welcome, so sorry to learn of your Grandmas diagnosis. I think the hospital will want a care plan in place for her. like others said although you can call and help a little you cant do it all and work

[Music man's wife]

So sorry to hear about your Grandmother's diagnosis. It's a shock that takes some coming to terms with.
My husband started getting care a year ago. He had no choice as I had been admitted to hospital so an emergency care package was put in place. If I had suggested having a carer he would have fought against it!

Now he and the carer get along famously they laugh and talk the whole time she is here.
I think if you explain that to do your best you'll need help hopefully your Grandmother will understand.

Best wishes to you both.

[Broostine93]

Thank you all so much for your extremely kind and supportive words- what lovely people you are!

Kayleigh- I've just dropped an email to the local Regional Care Development Adviser after reading your advice, so thank you!

I will certainly try my best to convince my Grandma that she will need a carer to come in- one of her sisters and brother has already told her, quite frankly, that she will need help if I do get ill or can't get to her for whatever reason, so at least the 'seed is planted' in that respect. I think this might actually be one of the harder 'battles' to start with.

I am due to go and see the doctor at the hospital today so I will ask about a care plan. I do find it very strange that my Grandma has been in hospital since 25th Feb and not one doctor/nurse/anyone professional has spoken to me about anything at all. All the information I've had so far has been from my Grandma (as much as I love her, I can't say she's the best at remembering absolutely everything the doctors will have been telling her about what's going on). As soon as I know what's going on, I'll be much calmer in working to an actual plan

Thank you all again!