Now he's out cutting the lawn

[Lilylou]

Last night my husband Robert choked quite badly on a glass of wine. We have talked about the future and are getting things in place for when he can no longer use the stairs. But watching him last night choking and having difficulty breathing with this glass of wine I suddenly thought that I'm not really prepared. Where do I go when suddenly he starts to choke on a regular basis. His speech has become a lot worse over the last few days . Where do I go next. I thought that perhaps the local hospice would be the place to call in and have a chat. But who do you contact when these things start to happen.

And now he's outside cutting the lawn, very slowly and the lines are not straight anymore lets hope it does not rain while he's out there!

Thought I was in control of the situation seems I'm not and now and then have a bit of a panic. I'll be ok tomorrow


Love to all

Lilylou x

[Terry]

Hi Lilylou, send Robert around here when his finished. I want straight lines though, so he best stay off the juice the night before.
I had more trouble chocking two years ago than I do now but maybe I'm fortunate and a lot more careful.
You generally get refereed to the hospice but you could just try popping in if close. It is well worth getting things sorted as soon as possible, as there is a lot to sort out. Whilst I had a wheelchair sorted two years before I used it to travel it did come in handy when I hurt my back.
Love Terry

[phred bear]

Hello Lilylou,
Blow, Terry got his lawn request in before me, guess it's a queue job...

If it helps, it was the OT who referred me to our local hospice, am on the list for the day centre and have been visited by a hospice nurse who went though my meds and made recommendations to our gp. Overall, she was far more understanding of difficulties/problems and able to suggest ways round which worked in our real world.

I too do things I'm not supposed to, the 'safety elf' is often marking my ticket .. but oh the satisfaction in managing to do something we once took for granted, maybe your Robert feels the same.. so long as you're there to pull the plug if it rains..

freda

[Lilylou]

Hi pared bear

Yer join the queue.

Because Robert has had pls for nearly 8years we have come to terms with MND gradually. (As his consultant said 'Robert is quietly deteriorating). So now when there are other symptoms choking a bit of dribbling and his voice has nearly gone I have started to realise that there will be more to worry about other than getting a wet room sorted for him. His driving may have to stop soon as well. He went Into the back of someone in sainsburys car park last week. He's much safer with a mower,!

Haylu if you are reading this I've hit one of those hurdles I was talking about and at the moment feel like crawling under it.

Anyway will get him up early tomorrow he forgot to do the edges of the lawn!!!

Night all


Lilylou xxx

[Robert]

Hi Lilylou I would suggest Robert stops driving immediately as he might hurt somebody else,it's hard to admit it too yourself that your driving is
dangerous but it has to be done, he would never forgive hiself should the unthinkable happen.

Warmest regards,
Bob

[roy]

Hi Lililou,

Sorry to hear of the worry you are now facing,I was advised by my consultant to advise of my condition to DVLA as to fail to comply
could invalidate both my licence and insurance,my condition is advancing at a faster pace,had no choice as legs and hands
No longer work.Bobs advice is as always very wise,I gave up driving 6 months from diagnosis.

Best wishes to Robert and yourself.

Roy.

[pete]

Hi Big Bob,

good to hear from you, Yes the driving is getting awkward for me now ,Luckily ,they that know things are sending me for assessment as to what mods are needed ,although my beloved Kia is not suitable for the mods in mind ,not being automatic . So that's going to be a real upset saying goodbye to that and seems the move to a WAV is most likely way to keep driving and beyond rather than mess about with changes as they will no doubt come along in time , you know already this ,so won't go on . Hope the view is as good as ever and St Pat is coping with your demands,you take care mate hope to speak soon, appreciate how difficult it is for you now.

Pete

[haylu]

Dear Lilylou.
Just read your last message. I m sorry to hear about Robert choking etc but I had to smile when you said he was mowing the lawn. I too panic, sometimes I think it can be harder for us to watch especially when we don't know what to do and can't really help. I know exactly how your feeling. I have a lot of days where I want to run away and hide!!!! (I haven't yet though. Ha ha) At least you haven't lost your sense of humour.
Yesterday I was in the kitchen and Ross was in the lounge. My daughter came in(she is home from uni for summer) and I heard her say quite casually "have you got down there yourself or have you fallen?" I rushed in, we all looked at each other and burst out laughing. For some reason he had just decided to watch tv lying on the floor!
Take care. Keep laughing!
Lots of love
Haylu. Xxx

[haylu]

P.s I hope he's done the lawn edges now! Xxxxx

[Lilylou]

Hi Haylu

Great your having a laugh brilliant news. Having your daughter home is sure to help. My youngest was here yesterday for a BBQ with her partner. Robert asked her to help him down the steps onto the lawn he went backwards and ended sitting on the steps and they were both in hysterics. My oldest daughter has a little girl ,lily, who has just done a fun run dot Grandads wobbly legs and raised 400.00 she is very proud .

The edges of the lawn are almost done but it does take for ever and the lawn will need cutting again soon. He has bought me a light weight mower!! Great.

Now I typed this thread and then lost it so you may have had it twice (but then you know by now that I tend to repeat myself)

Lots of love to the 3of you

Lilylou