I have been struggling alone with my Mother's 'mixed dementia' diagnosis for 3 years. Her diagnosis was hindered by the fact that she suffered from Meningitis when she was pregnant with me, some 57 years ago. This left her with short-term memory problems, decreased logical ability, a tendency to be 'difficult' or even anti-social at times, yet completely almost inappropriately social at other times. Whilst she held down a number of jobs, Mum usually left due to the embarrassment caused by not remembering who had given her what work and also because she appeared to be 'odd' to some people. Her colleagues then shunned her. She has always had the kindest of hearts but was given to mood swings and I grew up mostly treading on eggshells but understanding that Mum could not help the damage that had caused her whole personality to change. My loving Father, despite the increasingly huge burden to his long-suffering patience, stayed with Mum until he passed away in 2012. Whilst I think he knew Mum was already in the very early stages of dementia, it was difficult to differentiate between the increased difficulties due to the simple fact of ageing, coupled with the previous brain-damage and the onset of dementia itself. Once the diagnosis was made I realised I had the most difficult of journeys to make and this is the first time I have sought support or information, other than the leaflets handed out by the various medical bodies.
Mum's situation is that she still lives at home alone in her bungalow but now has acute physical difficulties, does not cook (she left the gas cooker on) but hasn't cooked properly for years, lives on sandwiches or occasionally soup from the microwave, her personal hygiene is suffering, she is hoarding, cannot clean effectively if at all, she rambles at times and makes up 'memories' often linked to things she has heard on the TV. I have had social services visit a number of times but I don't think they are too shocked either by her condition and weight loss or the condition in which she lives. It took me 18 months and a very forceful conversation to get her to agree to having a 'fall alarm' fitted. Mostly she refuses to wear the pendant and lies that she has just taken it off. A very good Occupational therapist who has visited Mum once and is returning in 2 weeks. is my only contact. She completely understood the complexities of the situation. Mum, despite being chronically crippled with arthritis in her feet, refused every single offer of help from her, both with simple aids like handles or bars/ramps in the home, to home help, meals delivery and everything in-between. She actively disliked the SS personnel who tried to help and will not entertain them. Even with an open sore on her ankle it took the wisdom of Soloman to convince her to have the dressings attended to. No amount of persuasion will get her to allow me to help in any way, not with cleaning, helping with her personal hygiene, cooking etc. The only area in which I am allowed to help is by taking her shopping in my Dad's car (which we have kept) twice a week. Fortunately, she is still able to shuffle on and off the bus but she is unsteady and has already had a number of falls. As I am an only child I feel the responsibility of her life and the quality she has, resides with me. I am tormented by her illogical arguments against absolutely anything which would give her a better quality of life. She can be demonically aggressive towards me when I try to gently persuade her to agree to something for her benefit, then turn almost into a simpering child, crying and saying she is sorry she is like this and what would she do without me. This happens when I am leaving. I hate leaving her alone but when I offer to stay she says she has to "sort out the room" (this would take days...) and really meaning she doesn't want me to stay but... perhaps next time. Sometimes I dread going up to see her, especially if she has been difficult and argumentative on the phone. Sometimes she rings me 6 or 7 times an evening and I know she is lonely and also forgets things she wants to say. I have tried to persuade her to live with us but she has no interest in ever leaving her home, which I respect. We have offered to build a Granny annex - she is adamant that I am too busy to have her living with me. I find her self-contradictory rants, usually aimed at me, demoralising but I know she cannot help herself. My question is when will I know that she absolutely has to have help, if not from me then from who? How do I get her this help? I spend most of my time worrying when I cannot get hold of her on the phone, even though she often just lets it ring, dials 1471 to see who has rang her and then calls back. But occasionally she will not answer and I then drop everything and drive the 40 minutes to her home to find she 'has not heard' the phone ring. Its is the most challenging situation to experience as I never feel I ever achieve anything other than keeping her company for a few hours twice a week. There are no other family members who can help and Mum has no friends. Even gifts I have bought for her, like a new radio, a walkabout telephone, a foot spa, clothes, lightweight vacuum cleaner, have been returned. Luckily she is oblivious to the stress it causes me - how do others cope?
At the beginning Mum's GP told me I have to wait for something bad to happen - this is appalling. Her medication is in a constant muddle and she is too-ing and fro-ing every week between the pharmacy and GP. I never get to speak to the same GP twice running and I get the impression they would rather not have to deal with her or me for that matter.
When her mixed dementia diagnosis was made Mum was offered medication, on-going monitoring, social activities and every single offer was quite rudely refused As we left, the clinical psychologist wished me luck. I have POA but have no idea how or when to invoke this and feel constantly worried and frustrated. Having read so many other posts, mine sounds trivial - there are people suffering from so much more. Perhaps this is just a good chance to get 3 years worth of struggle and worry off my chest. This disease is cruel and insidious in so many ways. My OH has no idea of the toll this is taking on me.
Mum's situation is that she still lives at home alone in her bungalow but now has acute physical difficulties, does not cook (she left the gas cooker on) but hasn't cooked properly for years, lives on sandwiches or occasionally soup from the microwave, her personal hygiene is suffering, she is hoarding, cannot clean effectively if at all, she rambles at times and makes up 'memories' often linked to things she has heard on the TV. I have had social services visit a number of times but I don't think they are too shocked either by her condition and weight loss or the condition in which she lives. It took me 18 months and a very forceful conversation to get her to agree to having a 'fall alarm' fitted. Mostly she refuses to wear the pendant and lies that she has just taken it off. A very good Occupational therapist who has visited Mum once and is returning in 2 weeks. is my only contact. She completely understood the complexities of the situation. Mum, despite being chronically crippled with arthritis in her feet, refused every single offer of help from her, both with simple aids like handles or bars/ramps in the home, to home help, meals delivery and everything in-between. She actively disliked the SS personnel who tried to help and will not entertain them. Even with an open sore on her ankle it took the wisdom of Soloman to convince her to have the dressings attended to. No amount of persuasion will get her to allow me to help in any way, not with cleaning, helping with her personal hygiene, cooking etc. The only area in which I am allowed to help is by taking her shopping in my Dad's car (which we have kept) twice a week. Fortunately, she is still able to shuffle on and off the bus but she is unsteady and has already had a number of falls. As I am an only child I feel the responsibility of her life and the quality she has, resides with me. I am tormented by her illogical arguments against absolutely anything which would give her a better quality of life. She can be demonically aggressive towards me when I try to gently persuade her to agree to something for her benefit, then turn almost into a simpering child, crying and saying she is sorry she is like this and what would she do without me. This happens when I am leaving. I hate leaving her alone but when I offer to stay she says she has to "sort out the room" (this would take days...) and really meaning she doesn't want me to stay but... perhaps next time. Sometimes I dread going up to see her, especially if she has been difficult and argumentative on the phone. Sometimes she rings me 6 or 7 times an evening and I know she is lonely and also forgets things she wants to say. I have tried to persuade her to live with us but she has no interest in ever leaving her home, which I respect. We have offered to build a Granny annex - she is adamant that I am too busy to have her living with me. I find her self-contradictory rants, usually aimed at me, demoralising but I know she cannot help herself. My question is when will I know that she absolutely has to have help, if not from me then from who? How do I get her this help? I spend most of my time worrying when I cannot get hold of her on the phone, even though she often just lets it ring, dials 1471 to see who has rang her and then calls back. But occasionally she will not answer and I then drop everything and drive the 40 minutes to her home to find she 'has not heard' the phone ring. Its is the most challenging situation to experience as I never feel I ever achieve anything other than keeping her company for a few hours twice a week. There are no other family members who can help and Mum has no friends. Even gifts I have bought for her, like a new radio, a walkabout telephone, a foot spa, clothes, lightweight vacuum cleaner, have been returned. Luckily she is oblivious to the stress it causes me - how do others cope?
At the beginning Mum's GP told me I have to wait for something bad to happen - this is appalling. Her medication is in a constant muddle and she is too-ing and fro-ing every week between the pharmacy and GP. I never get to speak to the same GP twice running and I get the impression they would rather not have to deal with her or me for that matter.
When her mixed dementia diagnosis was made Mum was offered medication, on-going monitoring, social activities and every single offer was quite rudely refused As we left, the clinical psychologist wished me luck. I have POA but have no idea how or when to invoke this and feel constantly worried and frustrated. Having read so many other posts, mine sounds trivial - there are people suffering from so much more. Perhaps this is just a good chance to get 3 years worth of struggle and worry off my chest. This disease is cruel and insidious in so many ways. My OH has no idea of the toll this is taking on me.