I have been writing this for week and since I started writing this Grumpy has been in hospital for 13 days. He has just been discharged today after yet another up and down stay within Scunthorpe General Hospital. “Frustrating’ is the main word possibly to use.
Some of you will know that my mum is the main carer for Grumpy (my dad) she is a an incredible woman and has had a life that has been full of ups and downs. She has always aimed to survive and she without a doubt continues to show this.
My mum has been married to my dad (grumpy) for over 53 years (I think). She met my dad as a young woman and they eloped to get married. Times were different then and she made choices that were of the time. Mum and Dad have had a tricky at times marriage but in later life they found their peace together after tragedy.
They went away every month for 5 days and loved every moment. However, in the last 2 years this has not happened due to Dad’s decline both physically and mentally. Now mum’s life is back to having to survive and not break. Not speaking for mum but I am sharing what she has shared with me as I am sure others may be going through similar and sometimes just knowing your not the only one can help.
Mum is Grumpy’s main carer she has some support in the morning for 30 mins from a care company (the trails of that have added stress also). Mum manages all Grumpy’s medication, she ensures he eats, drinks, that he still goes out (only to supermarket now), she manages finances and she manages his appointments with so called professionals (so called as some have let mum down enormously).
So her journey is full of frustration, anger, sadness, bereavement, bewilderment, paranoia, jealousy and noise so much more. I will explain each of the words and what it means in the journey for mum:
Not getting support from professionals, not been listened to and no follow up from appointments. In fact her time is taken yo chasing constant answers. She has no one to support from the professional side. Not seen a consultant and having a GP surgery that do not follow things up. This is one of the biggest frustrations.
Poor care and lack of dignity given to grumpy which is unacceptable on every level. Mum shows her anger very clearly and has now show how empowered she has become. She has had to raise her anger very clearly and we thought the last stay was the last time we would be annoyed but actually the stay this time caused issues of people not doing their job. Placing Grumpy at risk. It’s just a waste of energy that mother can not afford to lose.
I think sadness would be the loss of the trips and expeditions she used to go on. She seems sad most when she has been stuck in and not had access to the outside world.
Losing the man she married. It’s bereaving a loss before it has actually happened. Knowing this is only going to get worse.
Being just shocked at the fluctuation of good days and bad days. Not knowing what the day will be until it gets here.
This is Grumpy having delusional and paranoid thoughts that he voices and this has caused enormous upset to mum. She has been told she has someone in the back bedroom, she has been told she has left him in the house alone, she has been told she has waved to men and it goes on and on. With Grumpy and his Dementia it his hard to know if this is an old personality trait coming out or being more apparent of if its him seeing things or hearing things or interpreting things in the wrong way. Either way it broke mum for a few days she had no sleep hardly, she had to be blunt and firm. She actually changed her approach which worked for a while or is working. What it showed me that in mums journey she is in control more not controlling but able to stand up for herself and she must.
Repetitive counting, 1, 2, 3……. then ‘Oh dear Oh dear’ then months of the year and so on and so forth. Its when ever dad is awake and mum has now had to purchase herself some cordless headphones. Just to drown it out.
IT is a journey for mum that is exhausting, sad and damn right SHIT.