Build-UK Chat Forums

[numptyclare]

Hello all,
Sorry we're all here, but so pleased to find some support.
My aunt Jean(who I am extremely close to) was diagnosed with MND in December. Up until then her only symptoms were some loss of muscle in her hand (which after having been treated for trigger thumb we had put down to that) and a fall which led to her breaking her arm, and of course we didn't put the two symptoms together until afterwards.
My main concern is that she and my uncle Alan have just given up. Jean's actual physical symptoms are (touch wood) no worse than they were pre-diagnosis, yet she seems to have given up al her independence and dignity. She is 63 and my uncle is 70. Since being given the awful news they sit indoors, smoking, drinking coffee, having nothing to eat and just being miserable. Myself and other family members have done what we can to help, but we can't get them out of this rut.
Jean is still abe to walk, yet my uncle follows her up the stairs just in case she happens to fall again - and - this is quite embarrassing, whilst round our house at Christmas, she even had him help to pull up her underwear and trousers after using the toilet when we know , and she has told us she is able to do this by herself.
I love my aunt and uncle and cannot bear to watch them waste away their time like this. They seem so sad. But mainly I am devastated that Jean has just written off her indpendence and her dignity. Especially when I know the time will come when we all have to deal with the reality of much of this.
I would really appreciate any wise words or advise from anyone who has been there. I really don't know what to do to help.
Thanks in advance,
Clare

[Hayleywart]

Hi Clare,

I am so sorry to hear of your Aunt's diagnosis. Reading through your post just brought back so many memories of emotions and feelings I had early after my Mum's diagnosis. It really is such devastating news, it is so easy to just feel like 'giving up', and fall into depression.

It is early days yet, hopefully both your aunt and uncle will be able to come to terms with it, and lift their spirits again.

Up until my Mum's diagnosis, I hadn't realised how disabled she had become (despite the fact that she lives with us). Once I knew what was wrong, I felt I should make up for not having helped her out enough in the previous months. Like your uncle, I worried about her falling. I remember dropping her off at the hairdresser and worrying about her crossing the road, and climbing the steps, without my help. When of course just the week before she had driven herself to the hairdresser and I thought nothing of it!

It may be partly a case of your uncle feeling he needs to take care of her (obviously) as much as he can, but he may also, like I did, feel guilty for not realising how ill she was, and helping her out more prior to diagnosis. It may also be (as was the case with my Mum) that she was actually more disabled than the family had either realised, or been willing to acknowledge. Perhaps she really has already been struggling with her underwear and trousers, and is now glad that she can actually ask for help.

The only advice I can offer, is to try and get their minds off it, somehow. Although in all truth I don't think I ever think of anything else anymore, so I'm a fine one to talk . Perhaps you can get them out and about, take them somewhere nice, and talk of other things.

I'm glad you joined the forum - I am sure you will find it an enormous help and support, I know I certainly have. Take care, Hayley.
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Remember - Baaaahhhh means No!

[numptyclare]

thanks so much for taking the time to reply hayley, and so sorry to hear you are going through this with your mum.
as a family we have all tried really hard to get them both out and about, but it's been very difficult.
I suppose what I want them to realise is that although things wil get worse that they haven't yet. You are right, we probably didn't realise how much it has affected but we know she is capable of a lot more than she is doing / my uncle is allowing her to do (Although her hands are pretty bad, she can manage to roll a cigarette now and then)
I feel awful, because as I type this I know I sound tough. But it is out of love and the need to help all I can. I just don't want her to give up on what she is able to do now and give in to this awful disease. I just want her (and my uncle) to make the most of every day and to still find some joy in their lives. I have come across many inspirational people whilst researching MND, stronger I am sure than I could ever hope to be faced with the same situation. I don't know what to do to stop them from giving up all together. Is it just time?

[Hayleywart]

I guess it's so hard to say really, because MND affects everyone so differently. When my Mum was first dignosed, we were determined to get her out, doing things she always wanted to do. Whale spotting, writing a book, taking the kids to Blackpool (her childhood haunt) etc. But as it turned out her illness progressed so rapidly, that it her optimism actually slapped her back in the face. She got all excited to do things, and then was not able to after all. However, her progression has been very rapid, and there are so many people who have progressed much slower, and been able to start new hobbies, and really get on with life.

I do think my Mum gave in very early on, and whether that had anything to do with the speed of her progression, I'm not sure. Personally, I think it did, and I hope your aunt can regain her fighting spirit, and enjoy a good quality of life while she can.
_________________
Remember - Baaaahhhh means No!

[Stuart]

Hi Clare, Welcome to Build-UK. Will you please tell your Aunt and Uncle that I said for them to get off their backsides and stop being so stupid. Just because your Aunt has been diagnosed to have MND it is not the end of the world. They still have lives to live, and the sooner they realise this the better. I was diagnosed 12 years ago last September, and it is no good sitting about feeling sorry for themselves.

Now tell them to see their doctor, and ask him/her to put things in motion for your Aunt to have a wheelchair. It is more dignified to sit in one rather than fall about like a drunk. But she could try walking arm in arm with your Uncle first. You can also tell them to stop being so bloody selfish, and think about the people who love them. Now is the time they should consider alterations to their home. If they own it then there are grants to be had (Now is the time to apply for grant aid in order for it to be at the head of other claims. April is the start of the financial year, so any applications are more likely to be met), if it is a council house then the council have a duty to provide for their needs.

They need to find things they can do together but, it is very important that your Aunt finds things she can do, and enjoy doing. I wrote my life story for my grandchildren to know something of me. I still write the odd poem and article. I don't write to get them published, I write because I like writing. I learnt to paint with watercolours, and though watercolours are no longer an option, I paint using freeware art programs downloaded off the internet.

Doing things has kept me alive to see six grandchildren, and if I have my way I will live to see great grandchildren.

Clare look at the member list (First Page), I think there is an e-mail link for me. If not PM me, and I will give my e-mail address to you. I will then sent attachments of some poems (not very good) and paintings. You can then show your Aunt what she can do if she puts her mind to it.

You can also search the forum for "August Revisited" which is my life story. It took two years to complete but, the important thing is, I did not worry about MND while writing it. I was happier, and my wife Jean was happier because of it. Now we don't look back, if we want something we have it (Finance permitting).

I'm sorry if I sound bolshy but there are times when you need to be cruel to be kind, and I think laying the law down now, will save a lot of problems in the future.

Best Wishes,
Stuart.
_________________
Dont just live with MND, MAKE IT LIVE WITH YOU. Diagnosed, September, 1997.

[Karen]

Hi Clare

If your aunt was only diagnosed in December, she is probably still reeling from the shock and adjusting. Before they can move on, she and your uncle will need to accept her condition. However you are right to try to get them to make the most of what they can do now, instead of just giving up.

I think you are off track when you talk of being embarrassed by your aunt asking your uncle to pull up her trousers and knickers and saying she is losing her dignity. Just because she can roll cigarettes, does not mean she can pull things on or fasten them and even if she can on one occasion, it does not mean she can on another. It's amazing how many different muscles we have even in the hands and fingers and how when they start to go, you can do some things but not others. She probably doesn’t like to admit that she has problems pulling things up, so stop criticising her for losing her dignity. Sadly there is no room for embarrassment in MND and dignity can be a luxury one cannot afford. Try to continue to be as supportive as you have been, encouraging her to get out as much as possible and to make the most of the mobility she has.

Good luck,

Karen
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[numptyclare]

Karen - thanks for your advice - I couldn't be sorrier than I feel if what you say is true. I don't mean to be harsh at all and to be honest am trying to understand about MND myself - I have never intended to criticise my aunt - I just want her to keep her independence as long as possible for her own sake, not mine or anyone else's - something I am sure other relatives on here may understand. I certainly didn't mean for anything I said to offend her or anyone else on here.
God I feel awful now. I keep trying to do the right thing and seem to keep getting it wrong

[numptyclare]

Ps - My aunt didn't ask my uncle to help with her underwear, just accepted his help. TBH I think he is overcompensating for being too tough pre diagnosis and she doesn't know how / want to tell him he is overbearing. I don't think they are communicating too well between themselves, let alone with the rest of us.
And I didn't mean I was embarrassed by my aunt, I would never say that, just embarrassing for me at the moment to talk about such things (stiff upbringing) - something I will have to get over.
Thanks to all of you on here - all of your advice makes sense, in all honesty I am a bit clueless, which is why I am on here. Just feel helpless at the mo

[Karen]

Hi Clare

Don't feel bad; I didn't mean to come across so strongly! MND is a learning process for both sufferer and carer and I am rather sensitive about the subject of dignity as I hate having the more intimate things being done for me but am reaching the stage where I have little choice.

You may well have a point if your uncle is being over-protective as that can be incredibly damaging for someone at a time when they need to hold onto all the independence that they can. Are you close enough to be able to have a talk to both your uncle and aunt individually so you can find out exactly what help your aunt does and doesn't want, and then try to make your uncle understand?

Karen
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[theflyingpig]

Hi Clare

Without knowing what your aunt an uncle are like with each other, its hard to offer advice. If you have had the same up bringing as them, then disease and illness usually gets done behind closed doors, so even speaking to you about it can be difficult, let alone doctors, nurses and helpers.

You could always take the opposite approach and rather than pussy foot around what you think is best for them, tell them that they need to start speaking to each other, to discuss the diagnosis and what they both think it means for them. Once they have managed to talk to each other, talking to you and the rest of the family will be easier for them. Although you think they should be making the most of it, you don't really know what is going through their minds and although quantity of time can be precious, sometimes there are hurdles to overcome before you can make the most of the time you do have left.

Just be supportive of them both, it's a life changing time for everyone involved but more so for the immediates who are affected (ie your aunt and uncle).

Good luck and keep us posted.
Much love
Nx
' :@

[numptyclare]

Just a quick update. My aunt is now in hospital. She also suffers from diabetes, and after not having eaten properly, or very much at all, she almost went into a coma on Friday night. The paramedics came, got her blodd sugar levels back to normal and left her with us on the promise that she would eat, check her bloods properly and manage her insulin appropriatley. Thinking this would be the shock she needed and the relief of it not being the MND that sent her unconcious, we were all rather optimistic. However the same thing happened last night and they have admitted her to hospital.
Does anyone else out there suffer from diabetes or have any information on how this can relate to the MND?
Still struggling to get them motivated at all. Despite having tried every approach from softly softly to plain blunt, nothing can bring them out of their misery. It is breaking my heart.

[theflyingpig]

I'm sorry Clare, but it sounds like your aunt has given up. She knows what will happen if she doesn't take care of her diabetes.

I have no more advice for you. Perhaps she'll get a grip and perhaps she won't. I'm sorry, but you need to speak to her honestly about what she wants. From what you are saying she believes her life is over, you need to show her, it isn't.

Best of luck.
Much love
Normaxxx

[numptyclare]

I don't know how to do that. I have tried so hard. I never actually thought of it that way. Do you think she is trying to end it? OMG what do I do?
Do I let her go or keep trying? What if I fail?
I thought I had to keep trying to encourage her to live her life but what if that really isn't what she wants? God, what the hell do I do?

Sorry folks, all your advice is sooooooo appreciated. My heads just a mess at the mo.

[Stuart]

Hi Clare, I also have Sugar Diabetes and it can be a pain at times. Your Aunt has Type 1 diabetes
and is why she is injecting insulin. Talk to her doctor, insulin can now be had from the chemist in
set doses in throw away needles; IE Each syringe contains a measured dose of insulin. These can
be kept from her and be administered to her by your Uncle. It may not be the case of her not eating
but, it could be she is not injecting. Also injecting too much insulin can also be very bad for her.

I beleive there is another method of controlling insulin doses. this is done by inserting a device under
the skin. The device then releases insulin at a controlled rate but, it needs changing every four weeks.

Your Uncle, or her carers must ensure your Aunt only has her normal diet, and prevent her getting
anything with a high sugar content. Forgive me but, I must stress all medication must be kept out
of her reach. Failure to do this might lead to legal problems for your Uncle.

I know it's very hard for you but, try to stay strong, and remember none of this is of your doing.

Best Wishes,
Stuart.
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Dont just live with MND, MAKE IT LIVE WITH YOU. Diagnosed, September, 1997.

[numptyclare]

Stuart - thanks again for your support.
Problem is she doesn't have a normal diet - she just doesn't eat

Just got off the phone to my uncle and I am feeling a bit more optimistic. The hospital wanted to send her home and she wanted to come home but he refused and argued with her, saying she needs to get sorted. Its the first spark of my old uncle I ave seen in months. Her blood sugar levels still aren't stabilised and he is concerned about managing it at home so has insisted that she stays in hospital until their further tests are done, and he managed to persuade both my aunt and the hospital that this was the best course. It's the first thing I have seen him do activley to help keep her going.

The worrying thing he told me is that they have taken her off rilutek as they think this is causing her nausea which is why she says she doesn't want to eat. Is this wise? Is there any other medication available to her?

Anyhow, I've rung off ordering him to get some good rest while he knows he needn't have one eye open watching her and while she is in safe hands. Hopefully he might have a bit more fight in him now and this might rub off on her when she comes home.

Hopefully my next post will be a bit more positive.
Thanks again to all of you on here, you're invaluable and I gain a little bit of strength from each of you.

Clare x