Hello everyone, new to the forum but looking for some support/ answers!
Mum ,now 77, had a massive Brain Haemorrhage with associated stroke two years ago. At first not expected to survive but after surgery and three months intensive care made an amazing recovery! Her speech was pretty clear, she had physiotherapy and was walking fairly well and was able to return home independently. However recently we have noticed this has deteriorated , speech is becoming more slurred and she now walks with a very pronounced limp....although she denies any problem. I I also recently discovered she has some urinary incontinence and when I asked if she had been aware of passing water she said 'no just got up and it's wet'...I have got a doctor's appointment to discuss this!
Firstly I wonder can the symptoms initially improve but overtime then damage more pronounced?
The big thing we noticed was the change in her cognitive function. Although she is deemed as having capacity under MCA she often lacks insight into the consequence of her choices something readily acknowledged by her Neurosurgeon and the staff at the local day hospital she attends. It's a problem because mum appears so plausible and it's only when you with her 24/7 you realise the extent of the loss of function in this area. This has effected things like her social skills, spacial awareness and the way she spends money like it's going out of fashion and offering to help out on anything or everything , eg when on a bus trip to find folks who had got lost (which is hilarious because she gets lost herself in unfamiliar places) . She also spends more time napping all day then sits up until gone midnight!
This has lead to some really difficult discussions/ arguments between mum ,myself and my sister.For example she has become fixated on the idea that she must take a holidays abroad because everyone goes on a them! Fair enough and I have taken her to France and on an ocean cruise ( and it was VERY hardwork !!) and this year she booked herself a river cruise with a friend who was happy to accompany her.But the constant thought process is she a must book the next holiday and that's it's high time she went abroad alone yet cannot understand why this is problematical as she is 'no more likely to have problems than anyone else'. Our family are keen for her to maintain as much independence as possible but it's so hard at times because my sister and I are then accused of treating her like a child when we try to point out the certain safety measures, even simple things like checking neither of us are away because IF she did have a problem then who would be contacted?? When we ask this she says if she fell over someone would pick her up and is she had an issue she can speak.for herself!! I did ask if she could do that In an other language but that is dismissed by what we call the mum shrug and her stat phrase 'ok, I get it' ....when she obviously doesn't!
Sorry if this is going on but as mum has capacity it's a big worry because , like last year, she has just gone off a booked herself a holiday . At her last neurosurgical appointment the doctor referred her for neuropsychological support, I know I have a copy of the letter which states she has significant cognitive impairment, and I know sister from day hospital also referred but it's almost a year and we have heard nothing. I am begining to wonder if this is mum too. She has on more than one occasion said to me she is going to speak to doctor because she doesn't think she needs that referral now because we are getting on better ( in mums mind that's the issue ) and I wonder if she has told her GP that the appointment is not needed.
Love mum dearly but it's getting really tough to know what to do and her sister has recently been diagnosed with early dementia and mum is on about having her down to stay so she can look after her!!!! (Which basically means me looking after them both and I feel awful because I have had to say not on your life I just cannot do it).
Any advice and support be appreciated but just being able to vent on here helps believe me .