Mish Mash of information and most likely not in chronological order. Please bare with me while I try to remember the sequence of events that came once we had diagnosis.
Bloody this diary malarkey (great word) is rather hard I can now see why I never had one, you really have to keep up with it or you end up like me wanting to tell you the journey but getting lost in the events. I have deleted this post a few times.
Recap: doctors visit with mum, first lot of tests completed, referred to ‘Memory team’ (quite apt) went to memory team and had more tests and the wait for the diagnosis commenced.
During this year waiting I was planning my wedding, dad was ill so many times, major infections, mini strokes, terribly bout of D&V which meant he collapsed in a hotel room only with mum to raise the alarm. Each time he had a hospital stay we would explain that he was waiting for a diagnosis. He had some stays in hospital that caused massive distress and upset to all (sometimes due to poor care). He would beg to go home, he would blame mum it was very distressing. There were calls that he may not recover and he just rallied round. We did not know if he would be able to walk me down the aisle (well walk is not the ideal term as dad is in a wheelchair). Levels of confusion fluctuated as the infections had an impact but as always, family and mainly mum just carried on and got on with what had to be done. Just before the wedding Grumpy was diagnosed with Alzheimer’s the memory team nurse came out and gave them both the news and commenced Grumpy on medication (not a cure). Grumpy made it to the wedding and managed to stay for a little but he was not well.
On the journey home mum said she was so scared has he kept on slumping and all she wanted to do was get him home. He had many more stays in hospital (in and out every few weeks) and it was exhausting for mum. I have to say I am in awe of my mother she is incredible.
Dad was assessed for 3 months by the memory team who came out with the medication each month after the first month they changed the medication and on the third month stopped all medication. They felt the medication side effects outweighed the benefits. By this time dad had really taken to his bed he had stopped really watching TV. He used to love all sport and watch films with mum but he no longer watched (there will be logs of moments of watching TV). He had become obsessed with hankies and a towel that he needed with him at all times, he slept a lot and if he got up he would never stay up long.
After a particular visit to hospital after a major bleed the decision mum came to was to ask for some help from carers just in the morning. We had to make our voices heard each time he stayed in we had compiled a medication list we had written ‘this is me’ we had explained fully all about grumpy and at times some wards were not good in fact there was only one stay which was when he had the bleed that we felt all his need were cared for and mum could have a break.
Its a bit late that I am writing this after 4 days away training. The journey has a long way to go but we know it’s going to have sadness and loss at the end. We have a group that helps and that group that my mum set up is called Grumpy’s groupies which is not for people of a sensitive nature. It is all women who love grumpy and who have a warped sense of humour but it keeps ups going.
So I will continue and tell you some of our joys that we have had and triumphs but also some difficulties and issues along the way that should not have happened.
Oh an a snippet from Grumpy’s Groupies as you can see it’s really helpful stuff but it keeps us smiling even when things are overbearingly awful.