Update on my Dad

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    Hello Gavin,
    The specialist will be able to answer many of your questions. I am wishing for a good visit. Gavin, regarding the bloating: Our JeffG was a strong proponent of keeping the bowels clean. Although, your Dad appears to be eating less, does he have regular bowel movements especially, since he is taking pain pills?
    Good luck tomorrow.


    Dear Gavin,

    I’m so so sorry to hear about your dad. I know my mum has good patches and bad patches, some days when she is more sleepy than others – in fact she came to stay with us for a few days and slept for most of the time and ate enough to feed a bird, which really worried me – but she has since picked up again and been less sleepy on some days since, had great appetite on other days, and even managed to drive and go out with a friend for coffee!

    She was told that high level of calcium in her blood could cause her confusion – and it was something she should look out for, as this can be monitored and controlled with a short stay in hospital and IVs. For my mum, this is NOT an option- she’s had enough of hospitals! And she would rather be confused. So, I don’t know if the calcium levels in your dad’s blood has ever been an issue, but it might be worth investigating? High calcium can cause fatigue too. The other thing that can cause confusion and fatigue is low iron – causing anemia so maybe that is another thing to ask about. I’m sure like my mum, your dad gets regular blood checks and they would pick something like that up quickly?

    I’m glad your dad enjoyed his horseriding at RDA…and how lovely that you have such nice photos and video footage. It’s great to hear that he and your mum are being looked after so well by the Macmillan group.

    Perhaps as your mum and dad enjoyed going out together so much, you can persuade them to plan something else nice to look forward to?
    My thoughts are with you all right now Gavin. I guess you have to hold onto the fact that your dad’s bilirubin (jaundice) is not causing him any problem, and I guess that is a good sign. I really hope the CT scan turns out to be nothing. I really hope too Gavin that he picks up again as well..

    Best wishes, take care you are all in my thoughts


    Hi all,

    Thought I would do an update on my dad as I havent done one for a for some time. Overall I would say that over the last 6 weeks or so he has gone downhill a bit, and his bad days now far outweigh the good ones. He is really tired pretty much every day and is spending about 18 hours a day in bed and some days it can be more like 20 hours. He gets up in the morning to go out for a paper, then has his breakfast, then back to bed. Up again for something to eat, then back to bed then up again for his tea at night. Usually after that it’s back to bed then up again for a bit before going to bed for the night. Not good, and it cant be good for someone to spend that much time each day in bed. It feels like he has just got into this routine that when he gets tired, he just wants to be in bed. He manages to go out on Tuesday and Friday when I take him to his day care group, but as soon as he’s home he goes straight to bed. In a way I think he’s given up a bit and has accepted that this is how things are now. On the plus side, he took up a new hobby, horse riding. I would take him on Wednesday for an hour as part of the local riding for the disabled program and he loved that as he had never been on a horse before.

    His jaundice has not re-appeared but he is getting more bouts of pain, in his right hand side, his lower back and sometimes in his stomach which his pain killers seem to do the trick just now. Occasionally he gets a very sudden sharp jolt of pain in his lower back which he rates at about 9 out of 10 on his pain scale. It is a very sudden jolt which goes just as quickly as it comes on. Lately he has been talking about feeling bloated a lot and his GP examined his stomach for signs of this but found none, however I still think he looks slightly bloated around his stomach. His appetite has dropped off quite a bit, but he still eats etc but not anywhere near as much as he used to.

    He is also getting very forgetfull and has been checked for early signs of dementia but the GP found none and he has been referred to a memory specialist for further tests but we have no date for that yet. On 2 occasions recently he has woken up in the evening and thought it was early morning so took all the tablets he has to in the morning, then got dressed and ready to go out for his paper. Then he comes through and has seen me there and realised that it is evening and not the morning. He has laughed this off but I know it is worrying him as his dad suffered from dementia.

    He wasn’t scheduled for a CT scan again this year, but we pushed for one and his GP agreed so contacted the specialist to discuss it and he had it last week. We see the specialist tomorrow at the hospital to see what the outcome is etc. As far as dads mood goes, it seems to vary quite a bit. When he is at his day care group he seems good and quite positive. But other times he seems quite down and I’m not sure how he will handle any bad news if we get it tomorrow. I’m trying to stay positive but am concerned, especially with regard to the pain and whats causing it. The horse riding did wonders for his mood, but that has finished now as it was a 12 week course and he had his last session last week. At least we managed to get a load of pictures and some video footage and they all had a great laugh and banter about it all at his day care group, it was his Macmillan group that organised it for him so big thanks to them for that! What a great organisation they are. They had their big coffee morning events throughout the UK the other week and dads group had one. I took mum and dad up to it and had a great time. It was also the first time in a long time that mum and dad had been anywhere together and I know they enjoyed getting out together. Dad got a load of sweets and some cakes, and it helped raise money for the cause. All in all a great day really!

    Thanks for listening and I will update again tomorrow.

    Best wishes


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