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Derek_
28th February 2012, 15:07
Just out of interest, have any of you and your carers on this forum been offered any respite. My wife and i have not been offered any since i was diagnosed in 2005.

john
28th February 2012, 16:46
Derek,
Irene and I were asked by Irene's NHS case worker recently. She didn't relish the prospect of someone else looking after her. Never used to be into massachism before this illness!! LOL

John

Bels
29th February 2012, 08:30
Hi Derek,

My Mum for about 10 weeks at the end of last yer went every tuesday to the local hospice. It gave my Dad a few hours to sort other stuff and Mum actually had a really good time. A very good lunch and normally some kind of massage.therapy. The reason she was referred to this service was for the therapies to try and relieve some of her pain. They have an MND Coordinator in their area who sorted this for them. About 3 weeks ago Mum, at short notice, went in for a week. She was very worried about it but it actually worked out really well. In a funny way I think it was probably much more difficult for Dad. It did help that Mum was familiar with the place before going in for a week. Again this was organised by the MND coordinator.

The weeks respite came around as Dad was shattered, as I know a lot of carers are, this week gave him time out where he actually ended up doing loads of jobs but also getting a better nights sleep. Have you got an MND nurse/local contact who you could ask about this?

Hope that you get somewhere with this Derek.

Bels

Crazy girl
29th February 2012, 09:02
Hi Derek

We don't have hospice's in Wales and I've not been offered any respite care since my husband was dx in Oct 2010, despite having a 3 year old too....

Means I can't remember what a good nights sleep is....

Sorry no help but wanted you to know you are not alone!

Tracy

Derek_
1st March 2012, 11:43
Thank you all for your comments, as usual all good comments and helpful advice.
Thank you Derek.

Derek_
1st March 2012, 12:02
Hi, Tracy,

You and Your husband must be a young couple to have a three year old. It must be really awful for you both. I went to a MNDA meeting at LEWES a few weeks ago, and there was a young couple there who had three young children and 1 only 18 months old. It makes me feel sad when i see people that young with this rotten Desease. At least you are not alone on this forum.

All the best to you both Derek.

Irene
1st March 2012, 19:28
I have cared for my husband John for 19 years and the only nights sleep I get is if he is in hospital but then its still disturbed because I worry about him.We havent had a break respite wise in all that time.He did try the hospice daycare once a week but when the transport that picked him up turned up two hours late or they asked me to pick him up we found in the end it wasnt worth the mad rush getting him up to be ready then me rushing round to be back to either meet him off the bus or pick him up.I ended up more stressed out than on a normal day.I love the bones off my man but I like many other carers would love a full day off.Good job we are a happy couple who get through each day with a laugh xxxIrene

Derek_
3rd March 2012, 09:02
Hello Irene,

I wrote you a reply yesterday, but as i was almost done, my hands of which have a mind of their own hit a key, i know not which one, and deleted everything so i give up and closed the laptop down.

I think it is sad that you have not had any respite for your self. Like your man i went to the local hospice day care centre for a few weeks and did not like it a lot. By the time Jenny my wife got me loaded in the van and drove there and back home, a hour and half had gone. Jenny only had about 2 hours to her self then she would have to come and pick me up again. So she was spending about 3 hours a day driving. There were about 20 patients at the day care and 2 nurses 4 volunteers. I needed help with my meals and the volunteers were not allowed to help me due to ('ealth and safety). So i had to wait and by the time a nurse was able to help the meal was cold. The volunteers were not allowed to help us in the toilet and so we had to wait. I have a closo-mat-shower toilet at home and it helps me keep my dignity, they do not have one at the hospice.
I'm not having a go at them in the hospice as they do a brillant job, i think they are struggling with the cut backs like we all are, so i would rather be at home with my loved one. We love each other to bits and have a good laugh.

All the best to you and your man, Derek.

ArtysArmy
3rd March 2012, 09:43
Hi Derek, My grandparents are cared for by my aunt and uncle and as there both ill its alot for my aunt who does most of it on her own and they go into respite every Thursday, Its mainly for my grandad but my nan goes will him because they have never been apart lol :)

Crazy girl
3rd March 2012, 20:33
Hi, Tracy,

You and Your husband must be a young couple to have a three year old. It must be really awful for you both. I went to a MNDA meeting at LEWES a few weeks ago, and there was a young couple there who had three young children and 1 only 18 months old. It makes me feel sad when i see people that young with this rotten Desease. At least you are not alone on this forum.

All the best to you both Derek.


Derek,

Yes we are a fairly young couple, my husband is 37. It's a very hard hand that life has dealt us but we try and make the most of each day, that's all any of us can do I think.

Thanks for your comments though, does make me feel we are not alone.

Tracy

Kiran
3rd March 2012, 23:26
Hi Crazy girl

We too are a young family... my husband (G60dubber) is 39 now and was diagnosed in Sept 2010. We have a wonderful daughter who is nearly 5. We do what you do and live each day as best we can. It really is tiring both emotionally and physically, but we are trying to stay positive, keep busy and be out and about as much as possible.

Thinking of you all.

Kiran
x

Derek_
4th March 2012, 10:37
Hi ArtysArmy,

It sounds like you all have a very loving family, and that makes a lot of difference.

Derek

Derek_
4th March 2012, 10:49
Hello Tracey,

When i hear young people like you and your husband have this cruel disease. It puts it all in perspective, there are more young people with this disease than one thinks, words cannot discribe it. If you need a chat i am sure someone on this forum will help you.

Derek.

ArtysArmy
4th March 2012, 11:10
we are Derek and my grandad is the one who holds us all together (so does my nan) so were all trying out hardest with him as you all know its not easy to go through or witness x

Jeannie
4th March 2012, 11:44
Hi all,

You might want to contact your local council and ask to be assessed for Direct payments/Self directed support so that you can arrange your own care. Your spouse or partner can still care for you, but you will also have the means/funding to employ a friend or family member to come in and care for you for 1-2 days a week (more if you wish), so you both get a break. Like most things it is means tested, however you might only have to contribute a small amount towards your care package - you will not have to pay towards the cost if you're in receipt of benefits.

sarahezekiel
4th March 2012, 19:09
Hi Derek

I agree with Jeannie about direct payments. I've had respite at my hospice several times and it helped me to have a change of scene. Maybe you should ask your hospice if you can come in for respite? The trouble now is that you'll probably need someone there to feed you because they are usually short staffed. When I first had respite in 2002 the hospice staff did everything for me. The last time I went in 2010, my carers had to come and help me. It's a pity that they have been hit by cuts too.

I was diagnosed at the age of 34. I had a 3 year old and one on the way. My marriage collapsed but I'm still here with my lovely children! Maybe having young children gives people the will to carry on?

I hope that you'll get the help that you need soon. All the best,

Sarah

Derek_
5th March 2012, 15:40
Hello Sarah,

I know the cut backs have hit the hospices very hard, and i would not ask them for respite as there are more needy people than me. My lovely wife is happy to carry on looking after me for as long as she can. I was only trying to find out more about respite, and all the good people on this forum have been very helpful, so a big THANK YOU to you all.

I have read some very sad stories on here and it is you young people on here Sarah that have the stamina to carry on despite what is thrown in your path. I do agree children do give you encouragement to say up yours to this disease. My grandchildren do the same for me.

Thank you Jeanie for input,i have taken it all on board what you have told me. If we need to know anything we just ask and everyone rallys round and cheers us up.

Thank you Derek.

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