Hi,

Hubby was supposed to go to the hospital for his PEG on Monday this week and when I phoned to check on the bed availability they said there was no bed available, so no PEG this week and we go back on a list and wait for another letter.

His mobility is going downhill rapidly and his breathing seems to have changed. We are in the middle of preparing a wet room and downstairs bedroom for him but that wonít be ready until next week. He is having difficulty getting up out of the chair and has trouble walking with the frame now. It exhausts him and he says his heart is pounding after just getting up let alone after a few ďstepsĒ. He is getting weaker in the arms and has lost an awful lot of weight.

The OT has ordered a profiling bed which arrives next Tuesday. She has also ordered a hoist to help with transfers from one place to another as it is getting so difficult to get up. The Macmillan nurse is visiting on Monday and we havenít see the MND nurse since the beginning of July. It seems that everyone is so busy that there isnít really time to keep all the plates spinning.

I am just basically letting out my thoughts and feelings around this as it is getting me down. Weeks and weeks of clearing out a room to get a wet room and bedroom in then the builders in for 3 1/2 weeks - hopefully finished today. Have to call the gas people out now as the boiler now leaks and not all of the radiators are working. Think I will be holding onto some of the builders money!

I am very worried about the amount of weight hubby has lost. We have an appointment for a riser recliner on 9th October and an assessment for a motorised wheelchair on 7th October - we could have done with those about a month ago!

We are literally limping along until the bedroom is ready next week, when hopefully all will be easier to cope with. I am his main and only carer, but I am not sure how long that will be for.... I am getting very tired.

I am truly grateful for this forum as I am not sure how I would have coped otherwise.

Ok, Iím done for now....

Love to all those who have sent messages and replied to my worries,

Wailywoo x