Build-UK Chat Forums

mabosser · New Member Joined: 24 Jan 2010 Posts: 6

I have just discovered this forum and used it over the last few nights as a reference tool. I just wish I had found you earlier.

My dad was diagnosed with MND in Oct 08, my first feeling was that of guilt. His early complaints/symptoms seemed trivial and my family and myself dismissed them and told him it was pyscological.

Anyway to cut a long story short, he is now in hospital for the third time since Hogmany. I am just back from the hospital, and I see a decline even since last night. We have been told to prepare ourselves for the beginning of the end on each of the last 3 hospital admissions but tonight I have come home thinking tonights hug may be my last. We are hoping that we can get him into the nearby MacMillan hospice to give him some peace and dignity which is lacking in the hospital. My mum has tried to discuss his wishes but having lost his speech he seems to just defer to her. My wishes, which I feel are selfish, is for his peaceful passing.
He is still fighting, I think for us, but to see my dad trapped in a dying body is just heart breaking.

Anyway thanks for listening.

Stuart · Posted: Mon Jan 25, 2010 10:25 pm Post subject:

Hi MB, I'm sorry to say that's the nature of this beast. Some, like your dad are taken very quickly, while others like myself are able to live with it for years. If it is any comfort to you I'll say a prayer for all of you tonight. Whatever you do, don't blame yourself. What has happened is not of your doing, and you need to be strong for your mum.
Best wishes,
Stuart.
_________________
Dont just live with MND, MAKE IT LIVE WITH YOU. Diagnosed, September, 1997.

Hayleywart · Posted: Mon Jan 25, 2010 10:44 pm Post subject:

Hi mabosser, yet another Scottish member I assume?

Whatever you do, don't feel guilty. Because if you do, I have to too! We, like your family, thought my Mum's symptoms were psychological and / or stress induced. Even her GP told me she thought Mum may be 'putting it on'. It's natural to have these thoughts, especially when the symptoms can be so vague, and the disease so difficult to diagnose.

I am sure, like us, your family made every effort to care for your dad as best you could, once you did know what was causing his symptoms, and for this you should give yourself a big pat on the back. It's a horrible thing to have to deal with - caring for someone you love, and watching them wither away before your eyes. Sometimes I feel as if this is killing me just as much as it is killing Mum. Rolling Eyes

I hope you do manage to get your Dad into a MacMillan hospice. My Mum is one one at the moment. She hates it, but she doesn't like to be away from home - it's a lovely place and the people are fantastic.

If you don't mind me asking, what makes them say he is close to the end? Is it his breathing that is giving in?
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Remember - Baaaahhhh means No!

mabosser · New Member Joined: 24 Jan 2010 Posts: 6

To be honest I think they have no idea. There seems to be no knowledge at the hopsital about MND. Our family GP has been great, and out of hours met with my dad on Friday. We had been asked to consider a feeding tube and my dad was avoiding the issue. The GP talked to him about this and pallative care, but he always just defers to whoever is talking to him as it seems to be less tiring than putting his point/thoughts forward. He has no voice now and communicates with a pad and pen.

Our GP has seen a decline in the last few weeks and when asked felt we maybe had a couple of weeks. He is now dependant on his mask, sorry I do not know the technical name, and has now also had oxygen added to this. His 02 levels had sat at 92/93 and have dropped to 89/90, he is struggling with a cough and cannot clear any flem. The physio managed to suction some last night before the machine broke!

He is on fluids and antibiotics to fight infection as they are still concerned about pnemonia. It is a real emotional rollercoaster.

mabosser · New Member Joined: 24 Jan 2010 Posts: 6

Oh sorry, yes another Scot. We live in Perth.

Claire · Posted: Tue Jan 26, 2010 5:01 pm Post subject:

Hi Mabosser so sorry to hear about your dad. I am in a similar position to you. My mum was diagnosed a couple of weeks ago and has been in hospital for the last 4 wks. She has been told that she will have to stay in for a couple more weeks but I see her getting weaker every day. She has had a couple of chest infections whilst in hospital and wonder whether she will ever come out.

It is some comfort to know that there are other people going through the same emotions as you and have found this forum very helpful in this respect.

I guess we all know that we will lose our parents at some point and when the time comes we have to deal with it the best we can.

Wishing all our relatives peace when the time comes.

Claire

Claire · Posted: Tue Jan 26, 2010 5:44 pm Post subject:

Just thinking about your comments on the hospital not seeming to know much about MND. This seems strange as there seem to be a lot of experts at my mum's hospital. They hold an MND clinic at Frenchay, Bristol for patients twice a month and the neurological nurse has called me at home and given me information about the disease. I'm wondering whether there is a lack of specialist knowledge in certain parts of the country.

Claire
x

Stuart · Posted: Tue Jan 26, 2010 8:32 pm Post subject:

Hi Claire, There is a general shortage of neurologists throughout the country. This means that only
the bigger hospitals tend to have neurology departments. Even then diagnosis of MND can be
extremely difficult. In my case the major neurology department in Wales failed to diagnose MND, and
I ended up travelling to London every 6 weeks over a period of 18 months. During this period I
had two five day stays in London for tests to be carried out. It was only after the second set of tests
the neurologists could say what was wrong with me.

Since then diagnostic techniques have improved, and diagnoses become quicker but, MND is still very
difficult to diagnose. Thanks to publicity drives doctors are now more aware of the disease but there
still those who never see a patient with MND. Now, whenever I am in hospital, I make a point of asking
for trainee doctors and nurses to practice their skills on me. If I am lucky and I get trainees, I stress the need
for neurologists, and nurses to specialise in treating neurology patients.

Quite apart from that, I get to see some lovely young girls. Laughing

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

Mary Docherty · Posted: Fri Jan 29, 2010 2:02 pm Post subject:

Hi MB
So sorry to hear about your dad. My mum passed away in December 5 months after being diagnosed. I know exactly what you are going through and if you would like to talk to some one who understands I work in Perth a few days a week and would be happy to meet with you if you feel that would help. I am no expert but I do know how you are feeling. Send me a PM if you would like to do that. Take care of yourself you are doing a great job being there for your mum.
Mary x

mabosser · New Member Joined: 24 Jan 2010 Posts: 6

My dad was admitted to the McMillan hospice on Friday. The facilities and staff are 1st class. He is still unable/unwilling to eat and is drinking very little. The staff have made him very welcome and comfortable and have also been great with my mum which reassures me as she is there from 2pm till 9pm every day.

The fight goes on!

Hayleywart · Posted: Mon Feb 08, 2010 11:07 am Post subject:

That's great news - I am sure they will both find the hospice a great comfort. My Mum is coming out tomorrow after a three week stay. They have helped her a lot and despite a back week last week, she is now brighter and happier than I have seen her looking in months! My kids even really enjoyed the visits to the hospice. We went to visit Mum yesterday and I told the kids it was the last visit there, they were really disappointed Laughing

. It is a really lovely place, with a very positive atmosphere.
_________________
Remember - Baaaahhhh means No!

mabosser · New Member Joined: 24 Jan 2010 Posts: 6

My dad passed this morning. He finally gave up his fight and under sedation passed with us by his bedside. He has gone down so quickly over the last 48hrs.

The man who took that last breath was not my dad, not as I knew him. The disease had stripped him bare, and the image of his face is burnt in my mind. It is an image that I want to replace with a happier one.

Still a little raw.

RIP Jim Hitchen.

ashfieb · Posted: Sun Feb 14, 2010 10:39 am Post subject:

Rest in peace, You and your family are in our thoughts and prayers
_________________
Barry - diagnosed "Probably" MND Jul 2005

Support: http://www.everyclick.com/barryashfield . . . the search engine that helps charity!
( Barry is helping ‘Motor Neurone Disease Association’ )

Hayleywart · Posted: Sun Feb 14, 2010 10:47 am Post subject:

I'm so very sorry to hear your sad news - but at least he is now free of this horrible disease. My thoughts and prayers are with you and your family at this horrible time.
_________________
Remember - Baaaahhhh means No!

James · Posted: Sun Feb 14, 2010 11:11 am Post subject:

So sorry to here your sad news, try to take comfort that he has escaped the evil Beast that goes by the name of M.N.D. and it can no longer torment him. R.I.P.
James.
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Life is what happens while you`re busy making other plans.