Re: What I've been up to

Thank you Twink55 for your kind words. I am constantly aware of not taking over Cate's thread, although we are able to hold each others cyber hand through this disease. Until the Ice Bucket Challenge very few people had heard of MND this, followed by the film about Stephen Hawkings, brought it to the public notice. On the the other hand you try explaining to a call centre in Mumbai why you must have a phone working in your house. I was asked *How did he get this disease* *How long do you expect him to have it* *when will he be well* I suppose we will have to wait until SH's film reaches the masses of Asia!

Carer stories. HUndreds. There was the night i had to call an ambulance for the carer. THe paramedics came rushing upstairs and saw this man lying in a bed on a ventilator and humidification system and immediately went into CPR mode. "No! No! I cried that is't the patient. That's her" pointing to a health looking 25 year old, who was duly carted off in the ambulance. We have had two faint at the sight of tubes being changed. Then there was the time that my house was turned into the Jeremy Kyle show. One carer accused another, from a different company, of denting her £64,000 Range Rover (don't know why she was working as a carer with that much money, that was odd in itself) I was holding the two apart in my dining room. I took one into the sitting room to cool off, and then outside to look at the car, followed by the other. The war carried on there and the police were called by one! Oh the fun of it. More stories I could relate but not printable on an open forum

It does help when people, like yourself, have been through the mill and understand some of the difficulties we face.I do sincerely hope you are well and truly cured. So many here are facing difficulties in heath matters. On the other hand the grandchildren have grown up with this, some are very young, and have fed Michael. Love riding up and down in the through floor lift. Grandad turns into a Dragon, when on his nebuliser, which facinates them.

Cate what are you having demolished? Didn't I read somewhere that you have a new dog now? One of mine is a real oldie and is causing concerns, every day is a bonus. These things are upsetting at the best of times but when there is so much going on it's very hard to deal with.

When does your PA start? Will she be daytime?

Off to do my daily ordering of *consumables and medications*

Oh, I was recommended a book to read some time ago. It's called The Selfish Pig's Guide to Caring by Hugh Marriot. How to cope with the emotional and practical aspects of caring for someone.

Celyn

Re: What I've been up to

Thank you for the hug Twinks. Your hugs are appreciated. In our own way, we are all good at coping with life and the things hurled at us by the very living of it.

We are totally remodelling our new house. Walls are coming down, to make room for two wet rooms and two largish bedrooms opening up onto the garden. We felt it was important for Keith, when he is bedbound to have the garden to look at.
I didn't get a new dog. We didn't think it was right to get one when there is all the upheaval of new house, new vehicle and lots of different people around. My lovely Ruud would have loved all the people but nurses and doctors don't always like to be covered in dog hair.

Our PA starts on Monday 30th November. She will work from 10am to 5.30pm however, she is happy to stay over night if she is needed during the week.

I am so glad that you have talked about your difficulties and carer issues. I can see that I need to toughen up and grow up a bit. Life is not kind.

I still think we should get our heads together and write a book. We could then go on to make a film. It would be a light hearted look at a very sinister subject and that is watching a loved one get further away and the odd bods coming to 'care' for him.

I believe that the film The Meaning of Life actually did people with MND a dis-service. Professor Hawkin has lived much longer than any other person with the disease. People don't realize when they leave the film that some people have less than 2 years after diagnosis.

I am going to look for the book by Hugh Marriot. I like the title. Although I cannot imagine being a selfish pig, I often feel that I as a person, when tested come up wanting, that I am not quite good enough. Most people would not be tested so much and never realise that they are not 100% perfection.

Re: What I've been up to

Poignant post Cate .... none of us is 100% perfect but in my opinion you (and Celyn too) are dealing with the problems you face in a fantastc way (although I'm sure that many tears are shed when no-one's looking !) ... and I can't agree that you are "left wanting" ....

Your lovely post on FB proves how kind, caring and considerate you are

Hugs to you both x

Re: What I've been up to

I have not watched, and cannot watch, the Stephen Hawkings film. I think most people are aware now, as MNDA have put it in the public eye, what the prognosis is. I read some years ago there was a question mark over his diagnosis as it doesn't fit the normal route of the disease. There are many different variations of MND but his length of life is remarkable.

What i found that upset me about the film was how wonderful everyone said the film was. Am I being oversensitive? IMHO what is marvellous about the subject matter? It's OK saying it's wonderful, as long as you are not experiencing the disease. Stephen Hawkings has been sponsored right, left and centre, with equipment. Being a celebrity he has had access to the best equipment and care. If only it was available to all. Not only MND suffers.

You see, I couldn't even remember the name of the film?

Re: What I've been up to

Just to add. We have three dogs and two cats. It has proved issues with carers, especially of African origin. They are terrified, for many understandable reasons (even the cats) We just lost a Bulgarian because she was terribly allergic and also was terrified of my sloppy three. I bred them until a few years ago, obviously that's off the cards now.

Michael wanted to stay upstairs, although I think he may regret it now. So en suite turned into a wet room and through floor lift. I think your idea sounds really sensible. It is what I wanted but Michael was insistent and I was overuled. I did have my way where the through floor lift would go. So I won on one count. OT's can be a bit bombastic on ocassion!

Draught of book after Christmas LOL I have warned the care companies. I have told them they will be in it, lightly disguised, but in it.

Re: What I've been up to

What an awful time you have been having, so sorry and then for you to take a tumble.
I know of a few people who have had hip. also knee replacements and have done really well, the one thing I would say if you have been given exercises to do, do your best to keep up with them.

Re: What I've been up to

Myrtle I thoroughly agree and much as both these ladies can find fault with themselves, I think they are wonderful. Both still show great love and respect to their sick husbands and take on a lot of responsibility in caring for them.
What I would like to say is, if either of the ladies ever want to have a moan, or just somebody to talk to, I would be happy to help... so feel free to Pm me and I can provide e mail, Skype addresses or even my phone number, because even the best carers need somebody to think about them, sometimes.

Re: What I've been up to

Thank you Twinks might take you up on that.

Re: What I've been up to

Please do!

Re: What I've been up to

Thanks Twink. YOu may not know what you have let yourself in for.