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Freesia30
29th April 2015, 00:57
Well Mum is back in hospital again! She was taken in by ambulance last night. If the MND was not bad enough they now think she has gall stones and may have to have key hole surgery.
I really don't know how everyone copes! You lot here are truly amazing!
I was just about managing dealing with Mums MND symptoms without this spanner in the works.
Mum was supposed to be going away on hol on Saturday, now we aren't sure if this will be possible. I just keep wishing Mums health would cut her some slack, give us a rest. Everything we plan is ruined!
I feel like I'm crumbling. I'm sorry for moaning. Just can't sleep again and just fed up! Today's just been a poo day :-( x

Candle
29th April 2015, 09:10
Sorry to read this and hope you and your mum get some respite. It's difficult enough coping with MND without the additional difficulties.

Terry
29th April 2015, 12:54
you have to plan things too do anything. quite often they work out and it's a shame this one might not. you are so right, in that anything else on top of mnd is a nightmare.

best wishes and i hope that she soon recovers from her opp, love terry

willsandco
29th April 2015, 13:01
To have an acute illness on top of her other problems must be simply unbearable for you. I wish it hadn't come to that, but if she has gallstones, she will be in a huge amount of pain and it has to be done, hasn't it? I have put on my end of life care form that hospital is ONLY an option with a reversible and/or treatable illness and Mums problems certainly come into this category. Hopefully, it will be done and dusted soon and she can come home again. Let us know how she is going on, wont you? Much love Joycie xx

Freesia30
29th April 2015, 23:05
Thank you everyone. Today hasn't really been any easier and I'm exhausted. Mum insists I carry on working but she's rang me several times today at work in floods of tears, I just feel so helpless. Dad and I have visited her in hospital tonight. She's looks awful, so pale. Shes in a far amount of pain. The doctor came round to talk to us, he was lovely and really gave mum time to ask questions etc which was nice as her speech was more slow and slurred than normal. They have done a scan its not gall stones. She has a enlarged liver. They are doing some blood tests tomorrow morning to test for blood infections that could be attacking her liver. He says we are looking at something more unusual, I said to him that sounds about right for mum she can't do 'normal'! He he! They have also found she has a heart murmur but that shouldnt cause any problems.
He is pretty sure its not MND related. It appears the bits of her body that are unaffected by MND are now going to be attacked by whatever this problem is. Bless her, it seems like her whole body is giving up!
The doctor has said to not cancel her holiday yet so we are keeping everything crossed its still a possibility for her.
I'm really hoping I get some sleep tonight as I'm really not firing on full barrels and I want to be able to help my parents as much as possible plus I have a full on day at work tomorrow which I can't do without some shut-eye :-( x

Candle
30th April 2015, 08:37
I worked throughout mum's illness but when things got too much I had to take the odd day off to recharge my batteries. Your mum means well as she doesn't want to affect your life but realistically a loved one's illness does. You don't want to be in a state of collapse from exhaustion so consider asking your employer for some time when you need it. I hope your mum gets over this problem that's put her in hospital soon.

Terry
30th April 2015, 10:56
Hi Freesia;

I'm sure mum's not taking riluzole at the moment as I think it can be harmful to a poor liver. Hope they find something soon and mum's pain lessens.

Love Terry

Freesia30
1st May 2015, 17:11
Hi,
Its funny you should say that Terry, as I was driving home from the hospital on Wednesday night, I had this thought pop into my head about my Mum's Riluzole use. I told Mum to ask the hospital to see if this could be aggravating her liver. The hospital have spoken to our MND Nurse this morning and between them they have confirmed that Mum's liver problems are caused by her Riluzole use. Typical! She therefore has to stop taking it immediately.

My Dad is on his way to pick her up from hospital and I am staying overnight at their home again to check everything is okay overnight.

Mum had a 'bad' night last night in hospital but she wont tell me exactly what happened. I dont know whether not knowing is worse than knowing!

I am so glad it's bank holiday and I have a day off work on Monday. I nearly fell asleep at my desk earlier on and with over an hour commute everyday I have stick matchsticks in my eyes so I dont fall asleep driving. I am getting fatter than ever with all the sugar I keep eating!!! Thanks everyone for your support. x

Terry
1st May 2015, 17:42
It's a bit disappointing that they didn't look at the drugs she was taking and looked up the unusual ones. She should have been on regular blood tests when starting the drug to check Liver and Kidney function.

If you do hear what happened that upset your mum in hospital, please report it to Mnda connect.

Love Terry

Freesia30
1st May 2015, 18:02
Thanks Terry. I asked Mum to ask the doctor if it could be her Riluzole and he replied that he wasnt sure as he didnt know enough about the subject. It comes to something when you have to self diagnose yourself! She did have regular blood tests when she first started the drug but these ceased after a couple of weeks when no problems were noted. She has been taking it for about 2-3 months. Luckily our MND nurse called the hospital ward this morning and looked into it with the docs.

I have a feeling that it maybe linked to low mood that made her have a bad night Terry. She is really struggling at the moment with her emotions and is very tearful at times. Which is very un-usual for my Mum. I have hardly ever seen my Mum cry and it's very upsetting to see. Obviously we console her but in hospital on her own I think this low mood has been exacerbated. I'll get to the bottom of it and see if she will speak to someone about the way she is understandably feeling.

Freesia x

Terry
1st May 2015, 18:16
Hi Freesia;

Your mum might just be very unhappy and depressed but she may have her emotions altered by Mnd. It is not so common but take a look at this thread:-

http://forum.mndassociation.org/showthread.php?1698-Emotional-Lability&highlight=Emotional+liability

I find it very hard coping with people saying something nice or being kind now.

Love Terry

willsandco
1st May 2015, 18:24
When I was taking Riluzole, I was under strict instructions to have blood tests every month for three months. I cant really comprehend why the medics stopped them. Liver problems are a prominent side effect. Hospital isn't the best place for anyone, leave alone anyone with speech problems. I had two nights in hospital in January, got wound up by the noise of alarms going off and being ignored and people in adjacent beds screaming and moaning all night. The best thing you can do is get her home. Then perhaps you can get a care regime in place, if you haven't already. If she is tearful and upset, it might be worth discussing this with a medical professional, if you haven't already. It is such a worry for you! Love Joycie x

miranda
2nd May 2015, 11:19
I'm like Terry with emotional lability. It so hard to explain that, for me, it's not depression or low mood, "normal" people might have a fleeting thought that something they see, hear or read is a little bit sad or a really happy event. For me, it will have me sobbing uncontrollably . My friends and family accept it now but it drives me mad and is so embarrassing. You sound as is you are having a really rough time and hope you get some support soon to make life easier.

Freesia30
6th May 2015, 18:13
Yeah my Mum has definitely gone through a stage of this and probably still is.
She continues to cry if someone says something nice to her. My Partner generally seems to set her off. He often says nice things to her and she just sobs! Someone bought her a lovely bunch of flowers once and she was crying that much she couldnt even speak to say thankyou.
She rang me from hospital last week sobbing uncontrollably, it was so heart wrenching to hear especially as I could do little to help.
My Mum explains how embarrassing it is for her and also often apologises afterwards but seriously we are all not bothered. It's just sad to see her so upset.
Mum is on holiday this week and is having a pretty awful week actually. She is having very disturbed nights sleep with terrible stomach pains still which is causing her to be completely drained in the day-time. She doesnt think that it is the Riluzole now and is determined to tackle it with the G.p. when she returns. Mum doesnt think it is MND related. I'll keep you updated, it helps to share! :-)

Terry
6th May 2015, 19:39
You could try being nasty (Jokingly). Watching, hearing and seeing anything nice will probably set her off. She could carry a laminated bright coloured card saying that she has Mnd and it affects her emotions and that she is not hurt and is best left alone as it is embarrassing for me and I will sort myself out. Please don't cuddle me or say anything nice like I am sorry.

If the close family are with her when it happens just stand in front so that not everyone can see her. You can try distracting her by saying things, nothing kind or sympathetic. Just talking about anything interesting between a couple of you and ignoring her unless she joins in.

The drug I took was very effective but I felt it was not so good for my movement.

Mnda are looking into this topic at the moment and I think that they will bring an information sheet on the subject.

All the best with it, love Terry

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