Hi. I am looking for some help, support, or just someone else who knows how I feel. My dad will be 60 in January. He was diagnosed with copd 7 years ago, finally gave up smoking 3 and a half years ago. My mum gave up work 3 years ago to be his carer as he was not able to do simple things himself. We have gone through winters of him getting infections, spending time on the respiratory ward and not really getting back to the same level. Every infection took him down a run of the ladder so to speak.
I went on maternity leave in August just before I had my second baby. The first few weeks of mat leave it was like having a new dad, he had so much energy and wanted to get out and about in his scooter. He was the best he has been for years. Then he had a couple of weird mood swings and then a sort of seizure. Mum called 999 thinking stroke, they took him in, he had another couple but nothing was ever diagnosed and he was discharged from hospital. His discharge summary said end stage copd. We all panicked but I spent ages searching it and saw that this could still mean years for him.
He has physically been well,he is on oxygen 24 hours a day and millions of other drugs. Then he started to get difficult. He was snappy with my mum, not really himself, had funny episodes where he couldnt talk or swallow. It came to a head the end of October when he was really mean to my mum, she got marched to the doctorby another relative who got him into a local hospice for paleative care to give them both a break. The day he went in was heat breaking, he was sure he wasn't coming out (the only people we know that have been there have been cancer patients that havent come out) he was there for 3 weeks and they assessed everything he needed and the OT came out to make sure he had hospital bed, standing up chair etc to make things easier for him at home. He also has carers twice a day to help mum out, the occasional night nurse and day care as well.
Well he has started to go a bit weird in the head. He sometimes talks likes 2 year old, slurs his words, gets very emotional, won't let mum leave him alone, wants my nan, is generally hard work. Sometimes he is totally confused, rambles about the weirdest things, not really with the world as it is today.
I got to their house Wednesday morning to find my mum a wreck. She had been up with him all night and then he had flipped in the morning, shouting expletives at her, saying vile things, nothing like he is usually. She had given him lorazepam to calm him down but really was at the end of her tether. She telephoned community nurses who in turn phoned her psychologist, supplied by the hospice, who then got him back in the hospice as an emergency case. I was at home with them to help them pack, I had my 2 daughters with me, he could talk to the, rationally, know who they were but then in another breath told me my mum was a witch and told my cousin he wanted to watch fireman Sam as he liked it.
They are assessing him. His psychologist is going to speak to a neurologist to see what they suggest but is anyone else in the same situation? Could he have dementia? Is this the end? He is a proud man, he would never swear at me and loves my mum more than anything, this is not him.
He is permanently on steroids, never goes below 20mg, have the drugs addled his brain, will we ever get him back?
I just want to go to the doctors with something for them to look into. If we can't get him back then having a diagnosis might make it easier to deal with. We then need to look into whether he can come home or whether we need to look at residential care.
I worry about my mum, she can't take much more. She is watching the man she loves fall apart and I need to support her,he won't be here forever but I expect to have her for a lot longer.
Thank you for taking the time to read my waffley rant.
A very worried daughter