A Devastating Diagnosis

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My Dad's brother, Uncle G, has been struggling for a little while.

He has been finding it increasingly hard to walk unaided and finding it difficult to use his hands properly, with his fingers constantly stuck in a claw like shape.

Then his speech became slurred.

It was obvious that something wasn't right but we couldn't pin point what it was.
The first thought was that he may have had a stroke.

Being the independent and strong willed man that he is he kept on putting off doctors appointments and hospital visits, not wanting to bother anyone, but a couple of weeks before Christmas the pain in his legs became too much to bear and he took himself to our local Accident & Emergency department.

By this point he was finding it impossible to walk, and his legs kept on collapsing from underneath him every time he tried to stand.

He was admitted in to hospital so that the doctors could carry out tests and try to diagnose the problem and after countless blood tests, a lumbar puncture and an MRI scan, Uncle G was diagnosed with Motor Neurone Disease.

2 days before Christmas.

My Dad and I went to visit him on Christmas day with a big plate of Christmas dinner and a Christmas pudding to enjoy.

There were a few emotional moments, especially when Uncle G commented on how this would probably be his last Christmas, but we still managed to have a laugh and a joke.

I am completely amazed at how well he is coping with everything.

Me and Uncle G on Christmas day.

Unfortunately the disease is progressing very quickly.

He can not walk at all now and in the past week or so has lost his ability to write and his speech becoming more and more slurred.

Eating has also become an issue, with swallowing becoming difficult and the food sticking in his throat, causing him to choke.
Because of this he has now had a PEG tube fitted so that he can be tube fed once swallowing becomes completely impossible.

The doctors have said the outlook isn't good.

Sadly, Uncle G only has around 6 months left to live.

It has come as a big shock to all of us but especially to my Dad and my Aunt, knowing that they only have a few months left with their little brother who only turned 60 a few months ago.

Knowing that he has to suffer such a horrible illness.

One that is going to completely trap him in his own body.

Unable to move.

Unable to communicate.

I can't think of anything worse.

My Aunt, Uncle G and my Dad celebrating Uncle G's 60th Birthday

Now it is a waiting game.

Waiting for the NHS funding department to sort things out so that he can be moved in to a care home instead of having to spend whatever time he has left with only a curtain between him and the rest of the world.
Surrounded by dementia patients who, through no fault of their own, are noisy and confused.

Watching other people die.

Unfortunately sorting out the funding seems to be a lot more complicated than we originally hoped.
Initially we were told that the funding had been arranged and that Uncle G would be moved to his new home within a week.
Then a few days later we were told that the funding had been rejected and that the staff were trying to appeal the decision, and sort it out for us.

A few days after that Uncle G was again told that everything had been sorted and that he would be moved that very same day.
But, only a few hours later, he was informed that he wasn't moving as he isn't eligible for the funding.

It is an infuriating situation for us as a family and even worse for Uncle G to have his hopes raised, and then dashed again.
I can't even imagine how frustrating it must be for him.

My Dad and my Aunt visit Uncle G a few times a week, keeping his spirits up and making sure he has everything he needs, and I visit whenever I can as well.

The past few weeks have been difficult to say the least, and all we can hope for now is that the funding department manage to get things sorted a.s.a.p and then Uncle G can enjoy the time he has left.

However long that may be.

Missy x

*Update*

Since writing this post Uncle G has finally been moved to his new home. We are really grateful to the staff who have fought tooth and nail to make that possible. Thank you.

About Missy B

Missy

Marissa Bird is a busy mum of six, blogging the realities of parenting, whilst trying to keep her sanity by reading books and taking photographs in her spare time... if she can ever find any!