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jellybean
10th December 2011, 19:46
Hi all,

My dad has MND and it has really taken hold these past 4 months. He lives over in north Holland and has recently come out of hospital where he was admitted for pneumonia..... His doctor has visited him and has spoken to him about "end of life care", "what stage does my dad want to go to sleep and not wake up again" They want to know this while he can still talk (very weakly). So its been a difficult evening, everyone is so emotional.... I would like to ask when should i go and see him, (been twice the past couple of months) my visit was planned for the spring, but now thinking maybe new year or next week.....What do you guys think?

paul-uk
10th December 2011, 23:40
Hi jellybean and welcome to the forum.

Sorry to hear your dad has this awful disease, and that he seems to have fast progression over the past few months. You don't say how long your dad has had MND, but it does tend to progress at different speeds. You might find it slows right down now and doesn't seem to get any worse for quite a while.

Regarding when you should go over to visit him.. I think you already know the answer. If it was my dad, I'd be over sooner rather than later.

Best wishes, Paul

elle
11th December 2011, 00:35
Hi jellybean,
so sorry your going through such a difficult,emotional time it's a difficult one regards " end of life care" it is something we need to face, i have discussed this subject with my mnd nurse, my son was so upset about
it but unfortunately it needs to be discussed it's what is best for your dad and his decision pending what speed he is deteriorating, but i will repeat what paul-uk is saying this disease goes at different speeds.
I'm sure you will make your decision on visiting if it was me i would visit sooner .

Best wishes x elle x
P.S WELCOME TO THE FORUM

MikeFD
11th December 2011, 01:53
Hi jellybean and welcome to the forum.

I can only agree with Paul and elle - I think I'd be making arrangements to visit again soon, but check, if you can, the opinion of your Dad's care team on his current condition. It's normal to ask the patient what their wishes would be whilst they can still make clear responses, so you may have a little more time than you think.

The decision about when to go is obviously yours alone, but if you feel you'd like someone to talk it through with, please call MND Connect on 08457 626262 as a matter of priority. They may be able to offer help or advice if they have more detail about your current circumstances - full details are available by clicking the 'MND Connect' tab at the top of this page.

Our thoughts and very best wishes are with you,

Mike.

Mr-Tumble
11th December 2011, 08:22
Hi Jelly bean.

Its a very hard one to understand and discuss the end of life situation as i agree with the other members,

MikeFD is correct that contacting MNDA connect they will help you through it all, they are very experienced and will help you in so many ways.
It is something all of us with MND have to think about as we have no choice but to deal with it when it comes,

Please visit him much earlier and much more often as possible to comfort and reassure him that your with him all the way

my thoughts are with you all.

jellybean
11th December 2011, 11:34
Thank you for your kind replies guys, my dad has only been diagnosed for about 18 months, but i believe he has had it a lot longer, it started with tripping over about 4 years ago then slowly other signs started to show as things progressed. He used to come over and stop with us for about 4 to 5 months of the year to play golf, visit friends and other relatives, but mainly to play golf and maybe more golf, or tennis just for a change. He has always been very active, although he is now in his 70s...he has not been across for 3 years now and we go as much as we possible can...

I have been looking at the flights all night, will be going this week, luckily in my new job, work has been understanding.

Thanks for the telephone number Mike, i think i will give them a call, i feel quite selfish in a way, i should be thinking about what is best for my dad, not wallowing in my own grief when he is still with us...(wry smile)

MikeFD
11th December 2011, 15:56
Knowing MND Connect, the last thing that they will want is you wrapped up in 'grief-wallowing'! You'll find them informative, helpful, knowledgeable and above all positive in what can only be a difficult and dispiriting time for you.

The Association has many years experience in helping people like yourself, because helping carers and families is another way of helping the very people who are at the centre of the situation - the PALS and people with MND themselves.

Good luck again and keep in touch. We all wish you well.

Mike.

Bels
13th December 2011, 18:37
Hi Jellybean,

Hope that you are doing ok. It is a very tough thing to come to terms with this diagnosis but distance is tough. I live about 300 miles about from my Mum and Dad but in the same country. My Mum was diagnosed a couple of years ago and my Dad is her carer. They are doing fantastically in very tough times. You have to go with your gut instinct on what to do just. All I can say is that it has really helped me to spend time with Mum and Dad as you never know what is going to happen. Some of it has been about difficult things such as the end of life care discussions we have just done but some is also about enjoying being with each other.

You also have to look after yourself and not feel guilty.

I hope when you visit it all goes ok.
Bels.

jellybean
25th January 2012, 17:57
Just a update really.....
Dad was in the hospital 2 weeks getting used to the breathing mask for over night, but 5 weeks on, he calls it turture, he knows the consequences, but wont wear it more then a couple of hours at a time. The local care home now has him over night time, to allow Francis some rest and they are organising a bed for downstairs at home for him. He had really gone downhill quickly when we saw him before christmas, but it looks and he sounds like the slide is getting worse. Going over in 7 days time, he has signed the euthanasia papers already guys......he is very emotional, how can i help him, how do you stay strong? words of wisdom please, at a loss....

pete
25th January 2012, 19:22
Hi jellybean

I guess the truth is there are no words of wisdom ,only that your there for him ,you can do little else ,I found with my father ,who i never really got on with ,as his time came he was happy for me to be there and respect his wishes, ,i too found that all the years that had past where i had little to do with him ,i now regretted, but he had his way and over time , i had come to realise ,only he could make that choice as much as it hurts you it was his descision and i respected that ,I only hope for you, find the inner strengh we all have, when we face up to things ,we really have little choice.

Best wishes

pete

Bels
26th January 2012, 09:00
Hi jellybean. I can only reiterate what Pete said. Just be there for your dad. Help, support and love him. Sorry there isn't something more to say. I hope your visit goes as well as it can. Belsxxx

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