Hello,
I've just signed up here hoping for some advice about the current situation with my mother. I apologise in advance for the length of this post
My mother is in her mid 60's and has Parkinsons' Disease as well as arthritis. My father (also mid-60's) is her carer. Over the past year or two her memory has been getting slowly but surely worse and she has lost interest in all of her hobbies and won't try anything else that's suggested to her (she's always been as stubborn as a mule and will find a reason why she won't do this or that). She became unable to concentrate on balancing her books (which she has always kept) and has struggled with money management, to the point where she is barely interested in the financial goings on of the house which is very unlike her. She started to have difficulty processing complex sentences during conversations, would say sentences and forget what she was saying mid-sentence then blaming whoever she was talking to for it. She became unable to follow the plots in her beloved soaps on TV. She would find excuses for all this (blaming her meds, her PD or other people) and blow off the suggestion that anything was wrong.
Then in May last year (2015) things took a dramatic turn for the worse when an infected leg ulcer landed her in hospital. First she lost the ability to walk and then stand (she had been walking albeit poorly with a zimmer frame prior to this), I don't imagine her weight helped with this (she is rather large).
She had hallucinations at times before this happened, and would always know that they were not real, but after being moved to a rehab ward, they got worse and she was convinced they were real. She also started to forget conversations she'd had minutes earlier, forget we had visited, forget she had eaten, forget where she was, forget she'd had physio. The delusions started to creep in slowly around that time too, becoming convinced her and my father were divorced and we (myself, my father and my brother) had all abandoned her, despite the fact my father and I were visiting multiple times a week and my parents are very much not divorced. She has also become doubly incontinent. They changed my mothers meds to try and take away those which could be causing the hallucinations but nothing worked. Around this time a consultant, who had a lot of experience with PD, suggested she was showing strong signs of developing Parkinsons' Disease Dementia.
Since our house (I live with my parents) had to be completely reorganised downstairs to allow for her new hospital bed and hoist, she had to temporarily stay in a care home after showing no real progress with physio, since she would scream and cry when they tried to get her to stand or take a step. She seemed to feel safe in the care home but her hallucinations remained.
In November she finally came home. Except the woman who returned is not the mother who left. She is no longer the same person. She has never settled since she has returned, and claims she has never lived in this house before now (we moved here 7 years ago). Carers come in to change her pads/nightdress etc. 4 times a day. She refuses to get into hoists, claiming she had an accident in one but we have no way of knowing if that's true or a hallucination, rendering her bedbound. She thinks she has been away from home for 2 years and that my brother has 2 children with his girlfriend, neither of which is true. She struggles to recognise me at times, and has spoken about me as if there were two of me (and has also hallucinated me in the room with her, seemingly at various ages - once I overheard her talking as if I were a badly behaved child, and the second time she was talking to my father and saying I had short hair and was in the room with them and I've only ever had short hair when I was 15). She thought there was 2 of my father yesterday. She still had lucid periods on and off, sometimes a few hours or even a whole morning but then she's off again.
3/4 weeks ago her hallucinations worsened so badly a UTI was suspected (which would have made it her 4th in a year) but testing proved that assumption false. Unfortunately, the memory clinic was coming to do an assessment around that time and decided to reschedule due to the suspected UTI and we haven't had another appointment. The hallucinations have started to frighten her so badly she's inconsolable (convinced dead people have come to get her or that she's falling out of bed or standing on the edge of the bed). Also my mother seems to be able to seem incredibly lucid whenever medical professionals turn up that she's mostly able to cover up how bad she is. But she always has these little tells that they don't pick up on (like staring at the corner of the room where this man she hallucinates almost constantly stands). She now hallucinates 80% of the time at least.
Unfortunately professional opinions are split. Some think she has a form of dementia, some think its just the hallucinations (and attention seeking) and if put on anti psychotics, they'll go away and everything will be fine and dandy. My gut instinct is something else is going on beyond the hallucinations. The medical professionals who have known her longer are noticing the problem much more that the new ones are.
The other problem is that my father is finding it increasingly difficult to cope. He has a health problem whereby he can go into anaphylactic shock at any time and one of the triggers for it is stress, so the stress of all this could literally kill him. Multiple people have suggested my mother go into respite but when she was asked about it by one of the professionals, she point blank refused to go and as she's considered to have mental capacity, there's nothing else to be done about it. She also said she won't go into a home, and won't go to hospital for any treatment for anything. I believe this is partly due to her absolutely hating being moved at all. After the professionals who mentioned care homes left, my mother became furious with my father for trying to "get rid of her" and my father pointed out that she didn't recognise this house, she then said that "it wasn't her home but it was the only place she's got".
It's very distressing to see my mother like this, and also the knock on effect its having on my father. I'm unclear on what happens next, or what we do now.
I've just signed up here hoping for some advice about the current situation with my mother. I apologise in advance for the length of this post
My mother is in her mid 60's and has Parkinsons' Disease as well as arthritis. My father (also mid-60's) is her carer. Over the past year or two her memory has been getting slowly but surely worse and she has lost interest in all of her hobbies and won't try anything else that's suggested to her (she's always been as stubborn as a mule and will find a reason why she won't do this or that). She became unable to concentrate on balancing her books (which she has always kept) and has struggled with money management, to the point where she is barely interested in the financial goings on of the house which is very unlike her. She started to have difficulty processing complex sentences during conversations, would say sentences and forget what she was saying mid-sentence then blaming whoever she was talking to for it. She became unable to follow the plots in her beloved soaps on TV. She would find excuses for all this (blaming her meds, her PD or other people) and blow off the suggestion that anything was wrong.
Then in May last year (2015) things took a dramatic turn for the worse when an infected leg ulcer landed her in hospital. First she lost the ability to walk and then stand (she had been walking albeit poorly with a zimmer frame prior to this), I don't imagine her weight helped with this (she is rather large).
She had hallucinations at times before this happened, and would always know that they were not real, but after being moved to a rehab ward, they got worse and she was convinced they were real. She also started to forget conversations she'd had minutes earlier, forget we had visited, forget she had eaten, forget where she was, forget she'd had physio. The delusions started to creep in slowly around that time too, becoming convinced her and my father were divorced and we (myself, my father and my brother) had all abandoned her, despite the fact my father and I were visiting multiple times a week and my parents are very much not divorced. She has also become doubly incontinent. They changed my mothers meds to try and take away those which could be causing the hallucinations but nothing worked. Around this time a consultant, who had a lot of experience with PD, suggested she was showing strong signs of developing Parkinsons' Disease Dementia.
Since our house (I live with my parents) had to be completely reorganised downstairs to allow for her new hospital bed and hoist, she had to temporarily stay in a care home after showing no real progress with physio, since she would scream and cry when they tried to get her to stand or take a step. She seemed to feel safe in the care home but her hallucinations remained.
In November she finally came home. Except the woman who returned is not the mother who left. She is no longer the same person. She has never settled since she has returned, and claims she has never lived in this house before now (we moved here 7 years ago). Carers come in to change her pads/nightdress etc. 4 times a day. She refuses to get into hoists, claiming she had an accident in one but we have no way of knowing if that's true or a hallucination, rendering her bedbound. She thinks she has been away from home for 2 years and that my brother has 2 children with his girlfriend, neither of which is true. She struggles to recognise me at times, and has spoken about me as if there were two of me (and has also hallucinated me in the room with her, seemingly at various ages - once I overheard her talking as if I were a badly behaved child, and the second time she was talking to my father and saying I had short hair and was in the room with them and I've only ever had short hair when I was 15). She thought there was 2 of my father yesterday. She still had lucid periods on and off, sometimes a few hours or even a whole morning but then she's off again.
3/4 weeks ago her hallucinations worsened so badly a UTI was suspected (which would have made it her 4th in a year) but testing proved that assumption false. Unfortunately, the memory clinic was coming to do an assessment around that time and decided to reschedule due to the suspected UTI and we haven't had another appointment. The hallucinations have started to frighten her so badly she's inconsolable (convinced dead people have come to get her or that she's falling out of bed or standing on the edge of the bed). Also my mother seems to be able to seem incredibly lucid whenever medical professionals turn up that she's mostly able to cover up how bad she is. But she always has these little tells that they don't pick up on (like staring at the corner of the room where this man she hallucinates almost constantly stands). She now hallucinates 80% of the time at least.
Unfortunately professional opinions are split. Some think she has a form of dementia, some think its just the hallucinations (and attention seeking) and if put on anti psychotics, they'll go away and everything will be fine and dandy. My gut instinct is something else is going on beyond the hallucinations. The medical professionals who have known her longer are noticing the problem much more that the new ones are.
The other problem is that my father is finding it increasingly difficult to cope. He has a health problem whereby he can go into anaphylactic shock at any time and one of the triggers for it is stress, so the stress of all this could literally kill him. Multiple people have suggested my mother go into respite but when she was asked about it by one of the professionals, she point blank refused to go and as she's considered to have mental capacity, there's nothing else to be done about it. She also said she won't go into a home, and won't go to hospital for any treatment for anything. I believe this is partly due to her absolutely hating being moved at all. After the professionals who mentioned care homes left, my mother became furious with my father for trying to "get rid of her" and my father pointed out that she didn't recognise this house, she then said that "it wasn't her home but it was the only place she's got".
It's very distressing to see my mother like this, and also the knock on effect its having on my father. I'm unclear on what happens next, or what we do now.