My Mum

[Luminol]

I'm going to start a thread here because I think I may need it, not sure what to put down yet, a few of you know the history with my Mum, but the majority of you don't...

So, in brief a couple of years ago Mum was slurring her words..I thought she was secretly drinking because my grandmother had recently passed away, but after some gradual deterioration she was admitted to hospital with a suspected stroke.

She did seem to improve but her speech never really got going again, last year her younger brother died, he was only 50 and this set her back again. Finally her speech therapist referred her to a neurologist and 2 days ago we were told that he was 99.9% sure she has Multi Neuron Disease, i'll finsh this later....

[Luminol]

Re: My Mum

The world is working against me! downstairs neighbour was just knocking on door saying we were flooding her house! dear me, plumber here sorting out bath seal! So were was I...

And apart from some electro test that she must have to confirm it, that well she probably has it. I was shocked, cried like a baby that night, but decided that I have nothing to cry about, how the hell must my mum feel!, its is by all accounts a miserable, cruel disease and I'm not actually sure she know exactly what it is.

I went to see Mum and Dad yesterday...I maintained a happy aura, had a laugh with my mum best I could because you cant really tell what she says now, and went top Sainsbury's and bought as much food, that is of a sloppy consistency as I could, because swallowing is becoming very difficult.

I gave my Dad the MND society phone number, he called and then cried, I gave him some comfort and then reminded him that whilst he should cry, we should try and focus on Mum.

I don't think any of them really truly grasp whats ahead and neither do I really....

[Luminol]

Re: My Mum

I've just got off the phone to my Dad, who was moaning about mum keeping him awake in the night saying she couldn't get her breath, I have to say I lost it, I've apologised now but I get the feeling no one is grasping the situation.

I've told Dad to call her GP to see if oxygen might help, it seem after being told the news we've been sent home to cope and I don't think we are, I'm even starting to question my Dads ability to 'care' or maybe he's just in shock?? I'm just rambling I think or trying to out pour so I can keep sane..

[enaid]

Re: My Mum

Ok you need to get some help before this goes any further and do not take no for an answer when requesting it.

You said you gave your dad the MND society number and he rang and then cried, while it is good for himself he is crying I do think you need to let it out. I think he maybe just feeling a little sorry for himself too, sounds selfish I know but it's human nature.
There is all the info about MND and what to expect and what help you can get on here, apologies if it;s the same number you gave your dad.MND Association - Life With MND

On there it gives a list of all the services that you may be referred to, I suggest you get on to your local social services yourself and get the ball rolling, also pester your GP if need be and tell them your dad is not coping.

Also in there is a section for carers have a read of that and don't be afraid to ring any of the numbers on there for help they are all brilliant.

I feel for you and I know it's so easy to lose your temper in these situations with your nearest and dearest. If you don't feel you can cope with all the info then ask another family member because someone is going to have to hold things together and know just what the future holds for all of you.
Take care Di xx

[Luminol]

Re: My Mum

Thanks Di,

Got a grip and got the hubby to help and...

GP is visiting tomorrow, My OH rang Social Services who said that at some point in the near future my Mum will be allocated a 'Neurological Nurse' who will visit and put together a action plan with my Mum and Dad to decide what help they will all need/want.

Rang Dad and said I'm not visiting tomorrow because I think he needs to cope and not depend to much at the moment, I also said that I have a suspicion I'll be needed more at a later date and that I don't want to burn out too soon.

My sister is going all day Saturday.

Mum can currently wash, dress and manage a lot of tasks albeit 'not in the same way' and not with any vigour or strength, she is very hard to understand so I told Dad to get her a pen and pad, she needs to be watched whilst eating and drinking in case she chokes.

My OH rang him with the helpline numbers, so I'm stepping back slightly, not sure if its the right thing to do...but we shall see. I'm waiting for this wedding to be over, then everyone can drop the pretence, essentially my Mum is no different from the day before we knew what they thought she has, I think she is probably quiet annoyed at all this fuss.

[Luminol]

Re: My Mum

Hi all, just updating,

Mum has her tests tomorrow at the hospital, so we will all know where we stand then, Dad has had all sorts of peeps helping him Social Services, Community Mental health etc, I haven't been down to mums since the last post (long story), but Mum comes here on Thursdays for dinner.

Will check back here, when I know more..

[enaid]

Re: My Mum

In your own time, you know we are here if you need us.
Enaid xx

[Luminol]

Re: My Mum

Bad day today, Mum arrived and mouthed the words 'its terminal' then just collapsed in a heap sobbing, think its only just sunk in..........dear me, I was crying, Dan had to come home from work, my sister came round, they think she probably has 6months left at the worst and she'll need her feeding tube very soon.

The MND support team have kicked in, loads of support.

I've been attending a meditation class on Saturday Morning at the local Buddhist Centre, and its helped me a lot, my mum wants to come this week, going for the whole live in the moment Buddhist attitude maybe.

I just don't know what to say.

[Mrs James]

Re: My Mum

I'm so sorry to hear this, there's not much I can do but to offer to be here if you ever need to talk or a shoulder to cry on.

Thoughts are with you all xx

[enaid]

Re: My Mum

Hi chuck,
I hope the Buddhist Centre works for you and your mum, I think we all need a little extra something at times like this.
Keep well on top of any support you are entitled to or need, do not be afraid to ask, or tell if needs be.
I can only wish you and your family strength and unity over the next few months and the best care and plenty of love for your mum.
So Sorry
Enaid xx

[TUTTSI]

Re: My Mum

Hi Lumi
I am very sorry to hear about your mum and I know how close you all are.

The mediation at the Buddhist centre sounds like a great idea.

As you know we are all here to offer our support to you hun, just let us know how you are.

<<<< HUGS>>>>>> xx

[Sapphire]

Re: My Mum

Oh Lumi, life at times can be a real bugger hun, I really wish I could give you a cuddle and make it all go away, but unfortunately I can't. Please remember that we are all here when you want a rant, this place and the Breast Cancer site has saved me from going to pieces many times since my diagnosis.

Big ((((Hugs)))).

[Caspar]

Re: My Mum

Hi Lumi,

I too am so sorry to hear how much things have deteriorated since your first post. I cannot imagine how hard this must be for you.

On a practical note, and reinforcing what Enaid said, you must ensure you get all the help that is going. This can be a real fight. I'm going through it at the moment with my parents and the powers that be seem to think you have no entitlement.

Keep strong, demand what is your right, or more your Mum and Dad's right, so that what ever lies ahead, which is undoubtedly going to get harder, everything is put into place now in order that family efforts can be put into being with your Mum and supporting your Dad through what you all have to face together.

Social Services etc... can be so stubborn - be determined.

Take care and my thoughts are with you.

[Luminol]

Re: My Mum

Hi All,

Just an update as Mum will be here shortly, Spent last 2 weeks sorting out Mum's will, in secret, so Dad didn't know, she hasn't wrote him out or anything she just said it was none of his business. She made me and hubby executor even though I would've preferred a solicitor to do it, but I know you guys will help when the time comes.

She's decided she doesn't want a feeding tube, think she may want things to take their course naturally or not, I can't really get to the bottom of her reasoning and its even more difficult as her speech is unintelligibly without real effort for all concerned, I bought her a pad but she can't be bothered.

Her choking fits are really concerning I was bad enough when weaning Daisy, always stressed whenever she looked like she was going to choke. I'm exactly the same with mum, flying across the table to slap her on the back.

The mndassociation have been helpful.

Thats it really except Dads closed off, keeps falling out with people, he complains he needs help, we help and he complains he doesn't need help?!?

Lumi x

[Sapphire]

Re: My Mum

Hi Lumi, getting the will sorted is your mums way of being positive, let her do things in her own way, she'll guide you.
Dad closing off is his way of dealing with it also, I think as hard as it may be at the moment hun, just being there for them both is really all you can do.
I'm sending you big, big ((((Hugs)))) and am sending positive thoughts too.