Meltdown

[jonboy53]

Mi bathroom is only 8 feet by 8 feet. It is upstairs so we steered away from a wetroom, wetrooms always leak. the sink is placed perfectly for a strp wash, and the Closomat Palma Vita washes my backside. We didn’t want to ever move, thats why we bought this house. Everything we have done is only temporary, nothing can stop me dying, and I try to be aware of that. I have bought myself a few extra months with a bit more dignity, but now three limbs have packed up, and breathing is getting worse. I am not afraid of dying, I just don’t want to be there when it happens.
I don’twant a peg, or a tracheostomy or eygaze
Me „what is gonna happen doc”
doc „dunno every patient is different”

What a crock - it is gonna be ghastly

[nunhead_man]

Hi Jonboy

I just wish we had the space to create a proper wet room et cetera for me to provide for the future and to make home somewhere I would want to come back to - we moved into this place a year before I started to see the 1st signs and spent more money than we will ever get back on it before we realise what I had - late diagnosis……

Just wondering if we can afford yet more money to make it better or move on to somewhere is better suited to us - which of course means moving out from the centre here to somewhere cheaper and losing our local connections all the services we value and our local friends.

We could get somewhere smaller of course, but that would seem such a backward step.

Warmly

[jonboy53]

thanks K

[Kayleigh]

Hi Jonboy,

I hope all goes well with finding a good carer.

I don't have paid carers at home yet, but have been looking into some of the options concerning local care agencies etc - some of the information on the following thread might be useful:-

http://http://forum.mndassociation.org/showthread.php?9111-Home-Care-Agencies-(online-search-facilities)-amp-funding-for-care&p=89315#post89315

Best wishes
Kayleigh x

[jonboy53]

My wife and I are going to get a carer in maybe two days a week to give her a break. She is very small and I still weigh 80kg. I havve spent £20,000 on a proper MND facility at home. I can go to the loo and wash my hair have a a]shave and strip wash in 55 minutes. Getting harder because my arms are failing.

[Sheila]

Sorry to hear you had such bad time at the hospice. Never been in one myself yet.
Hope you are comfortable at home now.
Best wishes
Sheila x

[Deb]

Sorry Jonboy for your experience at the hospice,

It's so worrying that we can be treated like this and your wife is unable to have a break or relax. I am sure she is happier with you being home because she must have been very worried.

I hope you are comfortable at home now. As Kayleigh said there is no place like it.

Love Debbie x

[jonboy53]

thanks K

[Kayleigh]

Hi Jonboy,

Sorry to hear that you were treated in such an appalling way at the hospice.

Now you are back home with your lovely wife, I hope you can relax as much as possible and enjoy your home comforts. Home is where the heart is and there's no place like home (and your home has a far superior MND facility than can be found at any hospice!!).

Love and best wishes to you and your wife,

Kayleigh x

[nunhead_man]

Hi Jonboy

No point now, very few are interested in what happens to us. I will be dead at Xmas

I'm sorry to hear that.

However your treatment as you describe falls far below what I have seen in our local hospices with elders of mine and a friend. And far below what I would want for me when my time comes.

If you do not want to say anything yourself perhaps saying it to an MNDA person (visitor, nurse, etc) might get the message over?

Warmly

Andy

[jonboy53]

No point now, very few are interested in what happens to us. I will be dead at Xmas

[Barry52]

I’m sorry that the hospice has let you down and this is not what we expect from an establishment meant to help. I hope your wife will register a complaint with the management as the care staff are clearly failing in their duty.

Best wishes,
Barry

[jonboy53]

I went into the hospice again to give my wife a break. On the first night the active mattress was set too hard, and the alternating cycle was not working. The care assistants refused to change the setting because they didn’t seem to know how active mattresses work. By 3 am I was weeping with pain, and had the beginnings of a pressure sore on my ankle. From thence onwards I was treated as though I had dementia, all my complaints were treated slowly and begrudgingly. After 4 days and only one hoist to the toilet my wife discharged me - the stress was too much for both of us. In two yesr I have not had a meltdown, bbut often feel on the edge.

[Gillette]

Hi Terry, Deb, Sheila and Shrew,

Thank you all. It really is a special sort of support on here, isn't it? Thanks, everyone.

[shrew]

sorry you had a bad time with carer