Hello everyone,
I've just discovered this website and I hope to be able to talk with others who have a parent/parents with dementia.
My dad is almost 80 and has been showing signs of dementia for around 2 years now. My mum is 75 and has suffered from mental illness all her life. They live together and my mum is my dad's prime carer. I have lived abroad for over 20 years (mainly due to the very difficult relationship with my mother), but I keep in touch and talk to them on Skype every single day for 30 minutes.
The situation with my father's health has been very difficult and gets worse. He doesn't even have an official diagnosis for the type of dementia he has. The doctors have tried, but due to my mum's lack of cooperation and habit of arguing with everyone, no one has been able to make much progress. She fights and blocks most suggestions the medics make. I organised carers to go in every day, but mum had them stopped because she didn't like it. She has always been very domineering and my dad has always obeyed her every command. His dementia means that she now has 100% control of him and treats him like a pot plant. There has always been an element of jealousy in our relationship (she has always seen me as competition for my dad's attention) and now she is limiting my communication with him more and more. This came to a head last night. I was talking to my dad on Skype and he was having a rare moment of clarity and telling me about a book he had started to try to read. She just barged straight in and broke up the conversation, talking over him or "helping him talk" as she always does. Though I was angry, I kept calm and asked her not to do that, and she immediately got angry and tried to blow it all up into a big fight, and then when I refused to rise to the bait, she resorted to insulting me with the most hurtful things she could think of, so I just switched Skype off.
That is pretty much a typical situation with my mother. We should all be focusing on my dad's illness, but what my mum focuses on is herself and how his illness affects her. She has never once said to me that she wants to find the best treatment for him. In fact she discourages any contact with doctors or care workers because it inconveniences her.
I have been in touch with the social services, my parents' GP and the local hospital by phone and email for the last year, but feel I am getting nowhere. They take weeks or even months to reply and often do not follow through with what they said they would do. One example - a nurse went round to try to talk to my dad weeks ago. My mum argued with her, so the nurse left. I mailed the carer in charge of my dad's case. She didn't reply for 3 weeks. It then took her another 2 weeks to contact the nurse to ask what happened and get back to me. She promised to send me contact details of the nurse's manager. She hasn't. She promised to contact my parents last week to arrange to go and see them. She hasn't.
My dad has had to be admitted to hospital several times for other ailments. Before Çhristmas he was in for 2 weeks. When he came home, we found he had lost 5 kilos. It turned out they hadn't been feeding him (he can't feed himself). They were also allowing him to wander off around the hospital. He lost his glasses. I phoned the hospital and the nurse said "Oh he probably threw his glasses in a bin when he was wandering around". I was disgusted.
I am ill long term myself and unable to travel over to try and sort things out, so I am online to them every day, helplessly watching this train wreck happen. It just gets worse and worse. My dad's dementia is so bad now that he needs an eye on him 24/7. He can't feed himself, go to the toilet himself, etc. Mum alternates between trying to cope and completely losing it. I can understand how frustrated and exhausted she is, but she won't let anyone help her. She cancelled the carers and points out how bad his hospital care has been and I have to agree with that. But when she snaps she is physically and verbally abusive to him. The social services opened a case against her last year because she admitted she had hit him. That was sorted out, but she still shoves him around and last week there was a scare about her having possibly broken his wrist. She had thrown something while angry and it had accidentally hit him (that was her story). I have asked him if he would like to go and stay in a care facility and get away from her bullying, but he says no, he wants to stay with mum however mean she is to him. After seeing how poor the care was when he was in hospital, I don't want him to go into care either. I think if he went in, he would pine away and be dead within a year.
So we are stuck in this awful situation. I was so stressed about it last night that I couldn't sleep. I will try to talk to them again on Skype tonight, but knowing my mother she will either refuse to talk to me to "punish" me, or else she will deliberately bully my dad about the argument she had with me in order to upset him and then she will blame me for upsetting him to make me feel guilty. This is one of her preferred methods of manipulating and controlling us now. If I try to discuss something about dad's care with her and my opinion is different to hers, she deliberately starts an argument and shouts. The loud shouting makes dad cry immediately and then she says "Look what you did. You made your father cry". Of course, I feel terrible, even though I can see what she is doing.
If you've read all this, thanks. It's all a mass of mixed up information, I know. I am just at the end of my rope - I don't know where to go from here.
LS
I've just discovered this website and I hope to be able to talk with others who have a parent/parents with dementia.
My dad is almost 80 and has been showing signs of dementia for around 2 years now. My mum is 75 and has suffered from mental illness all her life. They live together and my mum is my dad's prime carer. I have lived abroad for over 20 years (mainly due to the very difficult relationship with my mother), but I keep in touch and talk to them on Skype every single day for 30 minutes.
The situation with my father's health has been very difficult and gets worse. He doesn't even have an official diagnosis for the type of dementia he has. The doctors have tried, but due to my mum's lack of cooperation and habit of arguing with everyone, no one has been able to make much progress. She fights and blocks most suggestions the medics make. I organised carers to go in every day, but mum had them stopped because she didn't like it. She has always been very domineering and my dad has always obeyed her every command. His dementia means that she now has 100% control of him and treats him like a pot plant. There has always been an element of jealousy in our relationship (she has always seen me as competition for my dad's attention) and now she is limiting my communication with him more and more. This came to a head last night. I was talking to my dad on Skype and he was having a rare moment of clarity and telling me about a book he had started to try to read. She just barged straight in and broke up the conversation, talking over him or "helping him talk" as she always does. Though I was angry, I kept calm and asked her not to do that, and she immediately got angry and tried to blow it all up into a big fight, and then when I refused to rise to the bait, she resorted to insulting me with the most hurtful things she could think of, so I just switched Skype off.
That is pretty much a typical situation with my mother. We should all be focusing on my dad's illness, but what my mum focuses on is herself and how his illness affects her. She has never once said to me that she wants to find the best treatment for him. In fact she discourages any contact with doctors or care workers because it inconveniences her.
I have been in touch with the social services, my parents' GP and the local hospital by phone and email for the last year, but feel I am getting nowhere. They take weeks or even months to reply and often do not follow through with what they said they would do. One example - a nurse went round to try to talk to my dad weeks ago. My mum argued with her, so the nurse left. I mailed the carer in charge of my dad's case. She didn't reply for 3 weeks. It then took her another 2 weeks to contact the nurse to ask what happened and get back to me. She promised to send me contact details of the nurse's manager. She hasn't. She promised to contact my parents last week to arrange to go and see them. She hasn't.
My dad has had to be admitted to hospital several times for other ailments. Before Çhristmas he was in for 2 weeks. When he came home, we found he had lost 5 kilos. It turned out they hadn't been feeding him (he can't feed himself). They were also allowing him to wander off around the hospital. He lost his glasses. I phoned the hospital and the nurse said "Oh he probably threw his glasses in a bin when he was wandering around". I was disgusted.
I am ill long term myself and unable to travel over to try and sort things out, so I am online to them every day, helplessly watching this train wreck happen. It just gets worse and worse. My dad's dementia is so bad now that he needs an eye on him 24/7. He can't feed himself, go to the toilet himself, etc. Mum alternates between trying to cope and completely losing it. I can understand how frustrated and exhausted she is, but she won't let anyone help her. She cancelled the carers and points out how bad his hospital care has been and I have to agree with that. But when she snaps she is physically and verbally abusive to him. The social services opened a case against her last year because she admitted she had hit him. That was sorted out, but she still shoves him around and last week there was a scare about her having possibly broken his wrist. She had thrown something while angry and it had accidentally hit him (that was her story). I have asked him if he would like to go and stay in a care facility and get away from her bullying, but he says no, he wants to stay with mum however mean she is to him. After seeing how poor the care was when he was in hospital, I don't want him to go into care either. I think if he went in, he would pine away and be dead within a year.
So we are stuck in this awful situation. I was so stressed about it last night that I couldn't sleep. I will try to talk to them again on Skype tonight, but knowing my mother she will either refuse to talk to me to "punish" me, or else she will deliberately bully my dad about the argument she had with me in order to upset him and then she will blame me for upsetting him to make me feel guilty. This is one of her preferred methods of manipulating and controlling us now. If I try to discuss something about dad's care with her and my opinion is different to hers, she deliberately starts an argument and shouts. The loud shouting makes dad cry immediately and then she says "Look what you did. You made your father cry". Of course, I feel terrible, even though I can see what she is doing.
If you've read all this, thanks. It's all a mass of mixed up information, I know. I am just at the end of my rope - I don't know where to go from here.
LS