HI folks
Realised its been a wee while since I shared any update or reached out here. Life's been a bit of a whirl these days. I feel as if I blink on a Monday and the next minute its Friday again.
Things around here seem to be a on downward slope. Now that said, G is still little short of miraculous physically although he is slowing down and we're seeing more changes this week than last week. His routine is still to get up at 6am, pedal in the garage on his bike for 3-4 hours then to go for a walk in the afternoons. It's a simple routine and he seems ok with it. He can control it and that's key with him. He's a control freak at heart.
Mentally/cognitively things are a different story. His speech is deteriorating and he struggles more each day to find the words he's looking for. He tends to get fixated on a particular word and keeps putting it into everything he says whether its relevant or not. Last week it was Manchester that was being mentioned repeatedly. . Today its been our daughter's name. Every sentence has lots of "thing" s in it. That can make trying to decipher what he is trying to say or ask quite a challenge but we're coping as best we can. He claims to still be able to fully understand everything and know what he's meaning to say. Judging by some of the hurtful and inappropriate things he has said of late I have my doubts.
Our local hospice are still coming out to see us weekly although we have been out of sync for the past few weeks due to annual leave and sickness. The nurse was out yesterday for the first time in 3 weeks and saw quite a difference in him. He'd had a fall in the kitchen on Tuesday night. He was ok and had no idea how or why he fell. I joked it was karma as he was pinching some chocolate out of the fridge at the time. When we were talking to the nurse we spotted his mouth was droopy at one side. She checked him over but he failed the smile test so the suspicion is that he has had a small stroke and that may have been the cause of the fall. Who knows...
She reduced his steroids back down to 2mg a day as the consensus is that as the symptoms they were helping are continuing to get worse then perhaps the Dex has served its purpose. I get it. Today is the first day on the lower dose. He's not been great today (very confused and seems to be in slow motion) but the decline is too soon to be attributable to the change in dose so we just need to watch and wait. Part of me feels we've just lit the touch paper here.
I shared a community blog recently about music.
Music speaks – how music can help us get through difficult days - Macmillan Online Community
Today has been one of those days where I have turned to quite a few of those songs listed.
Hope everyone is holding up ok or as best you can. This is a gruelling rollercoaster ride but the love and support from this community is a great support along the way.
Love n hugs to you all
Wee Me xx
It's like walking a tightrope, My stock answer to the how are you question is "I am. He is. We are," As you say every day is something new to face.
Hang in there.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
New faces are a challenge here too as G does not take too well to some people. I had an agreement with the hospice that for continuity's sake we would limit it to 2 named nurses plus the Dr. Last week a different nurse called to rearrange the weekly visit. It was no one I had spoken to before and to be honest her overall manner got my back up. I refused to let her come out as it would have been a waste of everyone's time. She had no prior knowledge of G to be in a position to gauge if there had been any changes so it would have added no value and just stressed him out. I felt a bit guilty for days for being so blunt with her on the phone. She came out this week with our named nurse and to be honest was just as unpleasant in the flesh as she had been on the phone and made no attempt to engage with G at all. If they try to send her again, I'll be saying no. It disappointed me as up until now the hospice staff have all been lovely.
I'm quite glad its the Dr who is due out next week. He likes her ...whew!
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Keep going everyone - it’s just terrible and you never quite know what each day might bring. My brother phoned last night full of beans - a bit slurry but fully with it. Today he’s had a bad night a
I can’t get him to pick up the phone. Thankfully my sister is with him - his wife died many years ago
