Hi,
I'm new here and not really sure where to begin, however finding a forum is in itself a bit of a support mechanism. My mum has dementia and hydrocephalus which have been progressing over the past three years. It has been a horrendous passage of time, as my dad was caring for her well beyond the point of being able to cope with heightening aggression and mum was steadily getting worse over this time period.
There was initial personality changes and organisation and memory loss in year 1, to incontinence, to falls breaking several parts of her body with several visits/stays in hospital with her being sectioned which led to the CT / MRIs which discovered the hydrocephalus. At this stage we weren't aware of there being standalone dementia alongside this - however in year 2 there were further progression of personality changes, verbal abuse, suicidal ideation remarks in year 2. Last year it got worse, with her deciding getting behind the wheel of a car when unfit to drive, and eventually culminated with a physical attack towards my dad after months of aggression, another fall and her being virtually unable to walk one evening when my dad and I had to take her into A&E last year in September. She didn't want to go but I think we knew she needed medical care we couldn't provide at that point and we didn't know how to move her. She tried to push against the wheel of the car on the way to the hospital while she was in the passenger seat and I had to block her hand from the back seat of the car and ask her to stop.
She has been kept in hospital ever since, initially being moved to an elderly ward, then subsequently sectioned again - this time long term. Prior to Christmas she got an infection and was moved hospital, spent a few days on oxygen and was rushed into emergency surgery one night with the doctor saying afterwards he didn't think she would make it through the night. Remarkably, probably due to her stubborn and determined character, she made it through this - avoided what was looking like sepsis and avoided an amputation. We had my brother fly back from overseas with my SIL as things looked so dire. I was relieved she had got through this.
Following the infection she was moved back to the ward she is held on under the section and although the burden of dad not being able to cope has lifted with her having the right level of support and care she needs it feels tougher than ever now for some strange reason. I have two toddlers and have recently had to stop them from visiting her any more, at least for now, due to the aggression as she tried to attack me in front of my children on mothers day. She has a lot of resentment and anger at me and my dad for 'putting her there' after taking her to hospital that night last year as she didn't want to go. I see her most weeks as we live 40 mins away and have two young kids, but I'm finding visits harder and harder. I've just moved. home with no support network around me in our new location. I've been struggling and my work told me to see the doctor to get signed off as I'm not coping very well with everything which I have - the doctor has given me antidepressants and signed me off work for a month. I feel guilty I just keep wishing this whole experience would be over. Sorry for the long post, it just felt cathartic to start to write a short download of events. I'm not sure where to go from here... I need to find a way through this period of what feels like grief and traumatic visits every week, and find some energy and joy again in life so I can support my family and get back to work. I guess I just wondered if anyone had been through a similar experience, or had any advice, pointers, resources for working through it all and getting back on your feet again?
Thank you
I'm new here and not really sure where to begin, however finding a forum is in itself a bit of a support mechanism. My mum has dementia and hydrocephalus which have been progressing over the past three years. It has been a horrendous passage of time, as my dad was caring for her well beyond the point of being able to cope with heightening aggression and mum was steadily getting worse over this time period.
There was initial personality changes and organisation and memory loss in year 1, to incontinence, to falls breaking several parts of her body with several visits/stays in hospital with her being sectioned which led to the CT / MRIs which discovered the hydrocephalus. At this stage we weren't aware of there being standalone dementia alongside this - however in year 2 there were further progression of personality changes, verbal abuse, suicidal ideation remarks in year 2. Last year it got worse, with her deciding getting behind the wheel of a car when unfit to drive, and eventually culminated with a physical attack towards my dad after months of aggression, another fall and her being virtually unable to walk one evening when my dad and I had to take her into A&E last year in September. She didn't want to go but I think we knew she needed medical care we couldn't provide at that point and we didn't know how to move her. She tried to push against the wheel of the car on the way to the hospital while she was in the passenger seat and I had to block her hand from the back seat of the car and ask her to stop.
She has been kept in hospital ever since, initially being moved to an elderly ward, then subsequently sectioned again - this time long term. Prior to Christmas she got an infection and was moved hospital, spent a few days on oxygen and was rushed into emergency surgery one night with the doctor saying afterwards he didn't think she would make it through the night. Remarkably, probably due to her stubborn and determined character, she made it through this - avoided what was looking like sepsis and avoided an amputation. We had my brother fly back from overseas with my SIL as things looked so dire. I was relieved she had got through this.
Following the infection she was moved back to the ward she is held on under the section and although the burden of dad not being able to cope has lifted with her having the right level of support and care she needs it feels tougher than ever now for some strange reason. I have two toddlers and have recently had to stop them from visiting her any more, at least for now, due to the aggression as she tried to attack me in front of my children on mothers day. She has a lot of resentment and anger at me and my dad for 'putting her there' after taking her to hospital that night last year as she didn't want to go. I see her most weeks as we live 40 mins away and have two young kids, but I'm finding visits harder and harder. I've just moved. home with no support network around me in our new location. I've been struggling and my work told me to see the doctor to get signed off as I'm not coping very well with everything which I have - the doctor has given me antidepressants and signed me off work for a month. I feel guilty I just keep wishing this whole experience would be over. Sorry for the long post, it just felt cathartic to start to write a short download of events. I'm not sure where to go from here... I need to find a way through this period of what feels like grief and traumatic visits every week, and find some energy and joy again in life so I can support my family and get back to work. I guess I just wondered if anyone had been through a similar experience, or had any advice, pointers, resources for working through it all and getting back on your feet again?
Thank you
