This is not a typical day necessarily for someone with MND as everyone is different, it is just a typical day for us.
Around 6.30am the PEG alarm goes off. I get up and get a glass of water, I disconnect Chris's feeding tube and then flush the PEG tube with the water. Sometimes I'll get another hour of sleep, other times I will get up. If I sleep in I will get up around 7.30am, I then detach Chris`s night wee bag from his convene sheath, empty and then dispose of it. I give him his alarm bell buzzer so that he can contact me. It is just a wireless doorbell, he sleeps a bit longer while I go and have my breakfast.
When Chris is ready he buzzes me. I help him transfer him to his shower chair and take him to the bathroom. I push the chair over the loo and leave him. When he is done there he buzzes me again. I push him to the basin where he washes and shaves. He still wishes to do all these things alone, so while is still able he does, even though it can be a very slow process which can take him an hour to complete. When he has washed and shaved he buzzes me again. I then help him to get dressed and attach the day wee bag to his convene sheath. When he is dressed I help him transfer to his wheelchair. I then give him his medication via his PEG and flush through with water and set up the day feed in his back pack, transferring the pump over from his night stand to the bag. This will pump in 750 mls of fibre feed during the day for about 6 hours.
During the day Chris will get mucous build ups between one and three times a day. I then use cough assist and suction to help clear it for him. This can take up to 30 minutes at a time.
I give any additional medication needed during the day via the PEG such as anti nausea medication, plus extra water if needed.
Around 4.30pm the PEG alarm will sound to say it has given the correct amount. I then switch it off and put two more glasses of water down, the first one includes any medication he needs. He is then free and is no longer attached to a feed so often chooses to sit in the armchair.
Bedtime is usually around 11.30pm to fit in with the feed timings. I give him his medication via his PEG and flush through with water. He transfers again to the shower chair. I remove the convene sheath from him, clean and dry him and attach the new one. Chris then does his teeth etc. I then get him into his jammies and wheel him to the bed. I help him transfer to the bed and lift his legs in. I make sure the feet are positioned properly on the lilo wedge and against the pillow support at the end. His dropped feet cause a lot of pain if they aren`t supported. I then attach the night wee bag to the convene sheath, I clean my hands and then attach his night feed via the stand pump. The night feed is a smaller amount, 500mls, but goes in at a slower rate so as not to upset his digestion. This takes around 7 hours to go through. We have an adjustable bed as Chris has to sleep in an upright position in order to breath properly. We have yet to introduce the NIV at night, but that is the plan.
During the day Chris will read, do a bit of office work, nap, watch TV and go out for a bit around the farm yard while he can. We get out when we can, welcome visitors and of course have various appointments now and then, some at home and some away.
During the day Chris will get mucous build ups between one and three times a day. I then use cough assist and suction to help clear it for him. This can take up to 30 minutes at a time.
I give any additional medication needed during the day via the PEG such as anti nausea medication, plus extra water if needed.
Around 4.30pm the PEG alarm will sound to say it has given the correct amount. I then switch it off and put two more glasses of water down, the first one includes any medication he needs. He is then free and is no longer attached to a feed so often chooses to sit in the armchair.
Bedtime is usually around 11.30pm to fit in with the feed timings. I give him his medication via his PEG and flush through with water. He transfers again to the shower chair. I remove the convene sheath from him, clean and dry him and attach the new one. Chris then does his teeth etc. I then get him into his jammies and wheel him to the bed. I help him transfer to the bed and lift his legs in. I make sure the feet are positioned properly on the lilo wedge and against the pillow support at the end. His dropped feet cause a lot of pain if they aren`t supported. I then attach the night wee bag to the convene sheath, I clean my hands and then attach his night feed via the stand pump. The night feed is a smaller amount, 500mls, but goes in at a slower rate so as not to upset his digestion. This takes around 7 hours to go through. We have an adjustable bed as Chris has to sleep in an upright position in order to breath properly. We have yet to introduce the NIV at night, but that is the plan.
During the day Chris will read, do a bit of office work, nap, watch TV and go out for a bit around the farm yard while he can. We get out when we can, welcome visitors and of course have various appointments now and then, some at home and some away.
Because of his choking issues I am afraid to leave him alone, so I wait until my daughter is around if I have to go out for any reason on my own.
This is our life at the moment..everyday.
This is our life at the moment..everyday.
