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Trevorhb
4th April 2015, 11:32
Getting very weak, sleeping downstairs now. Continuous Health Care has been agreed and we have a carer in the morning and one sitting with me overnight. Have stopped most medication, what is the point. Hope to get into the hospice next week for respite. Annette doing a tremendous job.

Terry
4th April 2015, 11:40
Thanks for that Trevor;

I never realized how bad you are. I know we have not heard as much from you recently. I hope you are reasonably comfortable and it would be nice to see you and Annette in Norwich later in the month if you can possibly make it.

Kind Regards Terry

Candle
4th April 2015, 11:43
I'm sad to read your post, Trevor, for you and Annette. Thinking of you both.

willsandco
4th April 2015, 11:51
You are both in my thoughts and prayers Much love, as always. Joycie. Xx

Springtime
4th April 2015, 13:50
Trevor you are in my thoughts. I will message Nettie again later. Sending you hugs as always. Jane xx

GrannieAnnie
4th April 2015, 14:32
Sending my best wishes Trevor, I'm so sorry things are as they are, but hope you will be comfortable. I've followed your posts and the two of you have been amazing. With love x AnnE

Sueb
4th April 2015, 14:45
Thinking of you Trevor. Hope you are comfortable . Hugs Sue x

Barry52
4th April 2015, 14:51
Thinking of you and Annette. Pleased you have CHC sorted.
Barry

Nettie B
4th April 2015, 15:49
Thank you all for your kind wishes to Trevor and myself. He is comfortable but finds it hard to stay awake yet strangely he finds it hard to stay asleep too.
His breathing is not so good and he is having tiny 10 minute top up of very low concentration of O2 when he struggles to breath.
The hospice is coming up trumps this Bank Holiday weekend.
Lovely Irene has organised a couple of hours of carers morning and evening and on Saturday and Sunday from the Care at Home team from Norwich.
She is trying for Marie Curie for the nights but apparently that's difficult in Thetford. I'll cope with the two nights if I can have those day time breaks. Monday night I will have two carers, an experienced one and a young lass who is learning the ropes.
I think that's all pretty good for a holiday weekend and I'm more than grateful.
I've been taught how to do a bed bath so that's a bonus and lots of stuff like mouthcare etc. It's such a relief to know how to do things properly ... so much stressful than making it up as you go along!
I've never done anything like this before.
Thanks to the professionals and to lovely supportive carers on this forum I know a little of what to expect and so far not panicking and know there are folks out there who care.
Thank you all! XXXX

Rainey
4th April 2015, 18:03
Hi Nettie and Trevor
I hope all goes well this holiday weekend - holiday?!! I'm not far behind Trevor in most things except, so far, my breathing is still not too bad although I have to sleep well propped up. The trouble with that is I've got a bed sore which gives me hell, and a frozen shoulder which also gives me hell when I'm trying to sleep. I'd give anything to sleep for more than an hour at a time. Sleep an hour, lay awake for 2 hours, snorting, choking and biting the hell out of my tongue and lower lip! What a complicated disease this is, we are all having different e experiences but none of them are pleasant. My husband managed to get me in the power chair this afternoon and we went for a glorious walk along a country lane, it's a dead end lane with a farm at the bottom. Trust us, loads of cars came along (they must have a do on at the farm) so it was stop and go all the way! But wonderful to be outside all the same. Love to Trevor, thinking of you both. Rainey.

Terry
4th April 2015, 18:23
I'm a bit worried about your bed sore Rainey, Have you seen the district nurse about it and perhaps got an moving air mattress.

Love Terry

DaiTheDragon
4th April 2015, 18:37
Trevor your condition and mine are very much alike and my wife like Annette has learned a lot about caring for someone with MND
Thinking of you both and saying a prayer fo you.
David

Pam S
4th April 2015, 18:45
Dear Trevor and Nettie, what a courageous loving couple you are, my thoughts and hugs are with you both. Pam S

Jan
4th April 2015, 19:07
I think you meant Trevor and Nettie Pam! You will be getting Terry into bother lol

Trevor I hope you and Nettie can find some comfort, we are all routing for you both xx

Graham
4th April 2015, 19:27
Hello Trevor,

I am saddened that you are struggling so much, but it is the nature of the beast. You gave me kind words when I was struggling in hospital and again I thank you for that.

You have a lovely wife and when it comes down to it, that is all we need in life. I wish you all the best and please know that you are highly respected on this forum and beyond. Take care my friend. Graham.

Artmart
4th April 2015, 19:43
Trevor & Nettie

Thoughts are with you. It's pleasing to hear that good supportive care is in place even though it's a holiday weekend.

Arthur

BlueEyesOhio
4th April 2015, 19:49
Trevor and Nettie,
I'm SO sorry to hear of your condition worsening! We are thinking of you and will pray for strength for both of you!

Love to you both, Lynne

Jangobie
4th April 2015, 20:27
Dear Trevor and Nettie, thinking of you both at this very difficult time. Much love Diane

Springtime
4th April 2015, 21:00
Have p messaged you Nettie xx

Rainey
4th April 2015, 21:24
Terry, regarding bed sore, nurse comes in and dresses it, it has a come and go theme, seems to be getting better then, wham, leaking like mad again. Very uncomfortable. I've have got a hospital bed with moving mattress but got my husband to take it off and put the other one back on. I couldn't do any manoeuvre in bed, couldn't help him get me into bed, it was stressful for us both. Luckily my heels are o k, we rub cream into them each night. Thanks for concern. Rainey.

Lycanthrope
4th April 2015, 21:25
Best wishes to you both. tc Becky x

Davetherave
4th April 2015, 22:08
Sorry to hear you're not so good Trevor, thinking of you and Annette.

Best wishes

Dave..

Breadnjam
5th April 2015, 00:57
Thinking of you both from across the seas, sending you both hugs.
Love Jam

Nettie B
5th April 2015, 03:20
Thank you everyone. Trevor sleeping peacefully at the moment.X

Jock
5th April 2015, 07:19
Trevor and Nettie: Thinking of you both.

Kind regards Jock.

Tikitiboo?
5th April 2015, 09:25
Warmest wishes to you both..... thinking of you

Hugs
Anna

crackers
5th April 2015, 09:30
Nettie
Good to see Trevor was sleeping peacefully but I guess it is difficult for you to get a good sleep. You are a tremendous support to Trevor and your love comforts him.


Please look after yourself.

Kelvin

Night walker
5th April 2015, 09:51
Hello Trevor and Nettie
I hope you both had a good nights sleep and just wanted to say Thank you both for being part of this forum and for all your posts.
I am glad you are getting support from your local services and do call the MND Association for anything you need quicker.
My best wishes and huge hugs to you both.
I am not too far away from Norfolk, I have this coming week as holiday so if I can do anything for you the. do let me know as I am good at the doing rather than having any words of wisdom to help you through this.
Take good care of each other.
Best of regards
Sylvia xx

Freesia30
5th April 2015, 10:13
My thoughts are with you both. X

Ellie
5th April 2015, 12:16
Trevor,
Really sorry to hear that you feel quite weak.
You have a very special lady looking after you.
Your forum friends are here with love and support for you both.
Ellie xx

john
5th April 2015, 12:25
You appear to have had little sleep last night Nettie looking at the times on your posts. Easy to say and hard to do I know only too well but try and get your head down for an hour or two during the day if you can.
Best wishes to you both.

John

Nettie B
5th April 2015, 12:56
Thank you John. Yes, it was a bit patchy but once Trevor has his Medazolin to relax him a little I didn't do too badly.
I'm on night shift again tonight but after that things get better.
I used to be a radiographer so I got used to working the day and then over night too ...but that was a LONG time ago!
I will try to sleep when Trevor does this afternoon which Im sure he will as he is very tired again.
Thanks for your empathy. We are hanging in there so far and hoping for some respite at the local hospice next week.
Sincerely, Nettie and Trevor.

Nettie B
6th April 2015, 06:11
Just to keep all you kind people in the loop
Trevor has had a reasonable night and I think he may drop off again shortly. He is in no pain but is weak. I'll show him all your messages of support later. I know he'll be overwhelmed by them all. Thank you everyone ...
and for the support for me too. What would we do without this forum?! XXX

willsandco
6th April 2015, 08:01
Updates are great, Nettie. Keep posting them! Much love to you both. Xx

Candle
6th April 2015, 09:50
I hope you're getting some sleep too. I know that's easier said than done.

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