Tam and Karl came back from holiday so I have some extra help, though I have been coping OK with the hoist and Chris, it's just a bit tiring.
After being told on Monday that a care package couldn't be found, my daughter-in-law, who is a carer had put a post on Face Book about how disgusted she was, this inadvertently got the ball rolling. Her boss read the post and contacted Tracey and said she would see what she could do. Next thing Tracey told me that the company she works for have won the contract and will start the next day (today). I then had a call from Chris's palliative care nurse to say that company had won the bid for Chris's care package and I also had a phone call from the care company itself. We were a bit shell shocked and had no idea things would happen so fast.
Chris' s sister Lucille came down too yesterday with his niece, her husband and family. They live up north, so it was lovely for Chris to catch up with them.
Chris was very nervous this morning, he had two male carers assigned to him which helped. They couldn't come till 10.20am though. Ironically Chris's Convene sheath off when it shouldn't have at about 7am, so I had to get Chris up to wash and change him and he also wanted the loo. After changing the bed I put him back to bed. The carers were great and Chris was fine with them.
Later in the day though Chris's second Convene sheath came off too which meant me having to change him again. These episodes do upset him, he is a proud man and it is really annoying that this keeps happening. The company sent some special wipes down a couple of weeks ago that are really sticky and I follow the instructions to the letter, but we still have problems with them. One of the carers suggested contacting the company that supply them and getting a different type which are better.
I had left a message with the district nurse earlier asking some questions, one got back to me later in the day. She gave me the number to ring about the Convene problems. I asked about disposable bed mats, I had some Huggies ones given to me, and wondered if they provided something similar and was told no, I also asked for advice because Chris was waking me in the night as he had pain in his coccyx area. He sleeps sitting upright and it is quite hard to push him slightly over to one side. We still had a Memaflex cushion here that went in his manual wheelchair and I asked if that would help. The nurse said give it a try, other than that she wasn't very helpful, just said they would try and think of something else, if that didn't work.
Chris watched his brother taking some of the machinery up to the sale field, seeing the cattle crush and feeders going really hit home to him. I told him that it was OK to cry, but he said he couldn't because if he did his own tears would literally make him choke. That really upset me, to think he is holding all that emotion in because it would make him choke, it broke my heart in fact.
The carers came at 7pm and got Chris ready for bed. So far so good. Chloe and I snuggled up with him in bed after to watch 'The Great British Bake off.' That was nice.
Chris slipped off the Memaflex cushion, then I remembered I still had a large piece of memory foam so I hoisted him up and sat him on that. He didn't get any pain so I guess it did the trick.
Chloe's visit truly has been a flying one as she is flying back to Gatwick tomorrow (Thursday) where Tom will meet her. She spent a lot of lovey time with her dad though which is the main thing
I sometimes think I must seem quite hard to some people, I rarely allow myself to cry, I learnt to protect myself from that kind of emotional pain a long time ago. I do sometimes of course, but I try hard not to. People say I am brave, I am not, we are not, we just live each day with this disease, one day at a time. We have no choice other than to get on with it. It is called survival, not bravery.
I hate and despise MND with a vengeance. Why is it so greedy, so gluttonous? It is always wanting more. I truly believe though that a cure will be found, not soon enough for the likes of Chris, but one day, please Dear God, yes one day.
