Hello Everyone - Issues with Trying to Care for my Dad

Discussion in 'I care for a person with dementia' started by Long-Suffering, Jul 6, 2015.

  1. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    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
     
  2. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    Update

    Well, as expected, my mother didn't log into Skype today. This is my "punishment" for daring to speak my opinion to her yesterday. Knowing her, she could easily now block communication for days, weeks or months. It'll also give her satisfaction to stop my dad from talking to me. She tells me that all he talks about is when he'll next be able to talk to me. By blocking communication she can make us both suffer and that will give her immense satisfaction.

    LS
     
  3. dora

    dora Registered User

    Aug 1, 2007
    144
    England
    Hi LS and welcome to TP, I hope you will find help and support here.

    There is no doubt that your father is a victim of abuse, and he won't be able to express his true wishes while he fears your mother's retaliation.

    I would suggest you make a list of instances of abuse (whether physical or emotional) and visit www.elderabuse.org.uk and contact their helpline and also find the contact details for the adult protection team for your parents' local authority. Hopefully they will take action - use the terms "vulnerable adult" and "at serious risk of harm".

    Good Luck, dora
     
  4. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,838
    Suffolk
    To add to what Dora has said, and I do agree with her, treatment in hospital is very different to treatment in a decent care home.

    In hospital, nurses are usually extremely busy, have quite a lot of patients to look after and are not necessarily dementia -trained.

    In a care home, the staff, all trained, will have more time with each patient and can do things like feed him.

    Do not disregard a care home because of a bad experience in a hospital.

    However, I can see you are going to have problems either getting him there if, indeed he wants to go ( unless he has lost capacity). Even then, I bet your mother has POA.
     
  5. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    Hi Dora

    Thanks for your answer and your advice. I know about the vulnerable adult/abuse situation already. I've discussed it with several people including care staff. The issue is that both myself and my father have been victims of my mother's abuse our whole lives. Him for 60 years and me for 47 years. We discussed all the options and my dad's wishes, and the social services agreed that him staying at home would make him the happiest. It was the best of 2 bad choices.

    What is hard for other people to understand is that for my father, abuse is what he is used to and is what he chose to accept for his whole life with my mum. That has always been the dynamic of their relationship and that has been his choice. Before he got dementia, I asked him why he had stayed with my mum when she had always been so abusive, and he replied that he loved her and would rather be with her however badly she treated him than without her. This is still the way he thinks now. If I talk to him about going away from her, he gets very upset. While he was in hospital for 2 weeks, all he talked about was going back to her.

    Believe me, if he was willing to go into care and we could find a nice facility for him, that would be the answer to my prayers. It's his unwillingness that is one of the problems.
     
  6. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    Hi Spamar,

    Thanks for the reply. I admit I have been negatively influenced by not only the hospital experience, but also the experiences of friends who also have parents with dementia. Both of them told me horror stories and ended up giving up their jobs to look after their parents themselves.

    What i haven't mentioned is that mum seems keen to get him into at least partial daycare to give her a rest. At one point, she was even calling ambulances about once a week claiming he was having a heart attack or suchlike to get him out of the house and give her some peace. She can be inconsistent - one minute wanting total control and the next wanting him out of her sight.

    I am pretty confused about it all. I think I just need a break from thinking about it. I had a nervous breakdown a couple of months ago, mostly due to this situation, so I am mentally not up to dealing with it.
     
  7. Caroleca

    Caroleca Registered User

    Jan 11, 2014
    332
    Ontario canada
    Hi LS and welcome to TP. I don't think this is an unusual situation, whether it be a man or a woman. It is however very sad and living abroad makes it even worse for you. I think it's time for you to stop skyping every night, for your own mental state. Your parents will not change and you need to think about yourself. Take a break...you sound like you need one.
    Carole
     
  8. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    Hi Caroleca,

    Thanks for the reply. What you said is what my best friend from school and my husband have said. My friend knows all that has happened with my parents through my life and she said she was amazed I still kept in touch with them at all. In her opinion my father deserves this current treatment because when I was a child and she was constantly physically and verbally abusing me, he did absolutely nothing to stop it. He pretended nothing was happening. He only reacted once when she was abusing me - he suddenly exploded with rage and rushed over to us with a clenched fist. I thought he was going to hit her, but instead he punched me. My friend said this is karma biting him on the ass now, and I should leave him to what he deserves, but I just can't stop thinking about it. When you have been abused, it messes with your head and your priorities are different from those who haven't. It makes your behaviour difficult for others to understand.
     
  9. Caroleca

    Caroleca Registered User

    Jan 11, 2014
    332
    Ontario canada
    Yes it does, you are absolutely right. My older sister has been fighting that battle for most of her life! She lives far away and always feeling guilty about this. When she does come to visit, it's a disaster, because she is not welcomed by the parents the way she should be! Long story....but she always comes back for more. It is awful....she does not deserve...none of us do...but it is part of the package...you r right...disfunctional...but it is what it is. Take a long break! You need it! It will NOT get any better...the drama just continues....believe me....I live it also...look after number one for a change...you deserve it!!

    Carole
     
  10. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    Thanks, Carole. I can see you really understand. There is always that hopeless dream that when you go back "this time it'll be different". Never is. Always the same. Yes, time to look after number one. Even the social worker said to just leave it to them and take a rest for my health. I just feel such a terrible sense of responsibility, but again that is typical of abused kids.

    LS
     
  11. Isabella41

    Isabella41 Registered User

    Feb 20, 2012
    901
    Northern Ireland
    Hi Longsuffering and welcome to TP. I think the time may have come to cut back on all the skyping. Its not doing your own mental or emotional help any good and is also probably causing your long suffering dad to be more upset when your mum flies off the handle during the call. Sadly I can say with hand on heart your story resonates with me all to well. My mother has been a very selfish and self-centered individual all her life. Her favourite saying was and is "the only person xxxx pleases is xxxx". My poor dad went along with whatever she wanted for an easy life. Its always had to be about her. Very often victims of abuse (your dad) are become so used to their lot that they normalise it and get scared at the thought of an alternative life being offered. Yes your dad was wrong and failed you when he didn't protect you when you were small and he certainly should not have punched you. There is really nothing you can do due to the distance and your own ill health. I imagine each call follows a similar pattern of starting off ok and the descending into a heated exchange. This is just not healthy. I think you should cut the phone calls down and each time your mother starts to go off on a rant very calmly say "mum you're beginning to get angry. If you continue to talk to me like this I will end the call". Carry through on the threat. She won't like it as she will see this as you taking control - which you are. Continue on doing this for a while and believe me you will see results. I'm speaking from experience with my own mum and this is the path I followed - it did work.
     
  12. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    Hi Isabella. Thanks for the reply. With my last call, I regret that I didn't give her the chance to behave herself before I switched off Skype. I just switched it straight off with no warning. I should have done what you said and warned her first so that the responsibility was hers. I used to have no problem fighting back, but I really don't want to upset dad. She knows that I walk on eggshells to protect him and I think this is what she thrives on.

    I really want to take a break from Skype, but I know that my dad's daily conversations with me or even just seeing my face is what he lives for now. He has a photo of me by his chair that he talks to constantly and says he'll be talking to me on Skype soon. My mum tells me this. I think she is very jealous, and she has made numerous comments about it recently. She hates the fact that she does everything for him, but I'm the one he wants to talk to. He does fight back quite a lot now. He gets bouts of aggression and tells her to F-off - something he would never have dared to do before. He also tells her to shut up. This makes her crazy with rage and I think it is also a factor in her wanting to control his interactions with me. It's all about control.
     
  13. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    I've been reading a lot of the other threads and what really strikes me is how cooperative most of the families of people with dementia are when dealing with social services and medics compared with my mum. She thinks everyone is the enemy and tries to keep them as far from my dad as possible.

    Also, a lot of the comments on here about the aggressiveness of dementia patients and how they are hateful to people are more true of my mum than my dad. One of the carers actually said they thought my mum also had dementia, but I said no because she has always been like that, it's her personality. But now I wonder.

    LS
     
  14. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,838
    Suffolk
    I'll swear my father had dementia from about the age of 45 ( knowing what I know now). He was late 70s, I think, before he was diagnosed, but known as a 'difficult' man. I didn't get the full force as I'd been thrown out years before! Lucky me! I swear if I'd had to care for him after mother died either he would have killed me or vice versa!
     
  15. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    The more I read on here, the more I think my mum has some kind of dementia too, and in that case she would also have started with it at about the age of 45. She too has always been known as "difficult". But on the other hand, there are no problems with her memory or any type of confused behaviour. She just exhibits the rage, aggression and abusive behaviour.

    LS
     
  16. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    Well, mum was on Skype tonight. She was very well-behaved too. Turns out she got up in the middle of the night to find dad fully dressed with his wallet in his hand and he told her he was leaving her to get on a plane and come and live with me! LOL! I think this shocked her into some kind of reality. Go dad!

    The care worker who should have called last week phoned today too, only mum was upstairs. Dad managed to remember she had called and told mum, but he seems to have told the woman that mum had gone out for the day and left him alone, so now she's terrified she's going to be prosecuted for neglect. I managed to calm her down on that one. I then had a 20 minute step by step detailed account of his latest bowel movements plus techniques for removing impacted stools. An average Skype call, really. Thank god.

    So anyway. The crisis is over until the next crisis. 24 hours of no stress until tomorrow's Skype call. Luxury.

    LS
     
  17. Emmy_83

    Emmy_83 Registered User

    Mar 8, 2014
    72
    Yorkshire
    I know exactly where you are coming from. My mum has refused all support at home for my dad saying it's just the two of them and that she promised to look after him at home until the end.

    She makes out he is a lot less capable than he actually is and smothers him. It frustrates me so much.

    It all came to a head on Sunday when I arrived and my mum was hearing voices and being verbally very threatening. I was so angry and upset for her to have put my lovely dad through this who has looked after her all his life.

    She has now being sectioned into hospital for 28 days. As I don't live locally I'm now having to put carers in place for my dad. I don't know how he will react to them. I dear having to leave him alone to go back to work where I live. Can't imagine him rolling around on his own at home at 88. They've spent v little time apart in more than 30 years they've been together.

    It also makes me sad that if she's accepted help from carers last year we wouldn't have got to this point but she turned that, support groups everything down. They have no family or friends as my mum trusts no one and has pushed all away. It's been a struggle to remain on the scene but I love my dad dearly. My mum has always been v domineering and manipulative since I can remember.

    I'm worried about the carers and how he will react. What experience has people had with them?

    It also makes me worry for the future. If he runs out of money will the council continue to fund carers coming into his home? When/if my mum comes home I want them to remain in place.
     
  18. Demonica66

    Demonica66 Registered User

    Oct 23, 2014
    55
    Hi Long-suffering, it sounds like your Mum has a narcissistic personality disorder, which is so miserable and stressful for all concerned. I really think you need to take a step back and give yourself some room. If you need to explain this to your parents then do so; your mother probably thrives on the stress she gives others; it will give her power to continue the drama. Ultimately, she is probably a very sad, unsatisfied individual. Your father however, has enabled her to continue her behaviour and is now reaping the rewards. As hard as it sounds, you must think of yourself in this. Things will very quickly come to a head when your mother can no longer cope and needs assistance. This would surely be in everyone's best interest? Hope this makes sense. D x


    Sent from my iPhone using Talking Point
     
  19. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    Wow, Emmy. Your story could pretty much be my story. So similar. They've had this really unhealthy co-dependent, relationship for 60 years. For most of that time my dad physically looked after my mum as she has suffered from long-term mental illness (supposedly schizophrenia, but that is now in dispute). She has had complete control of my dad mentally all these years, or until he got dementia. Now that his brain is harder to control, she has to put in a lot more effort to keep him under control and that includes limiting his access to other people and medics. This is against my wishes but not against his. He has no desire to leave her. It is and always has been torture to watch. I also suspect that as in your case, my mum does her best to convince my dad that he is incapable of doing anything. I think she tries to crush his confidence so that he will be more pliable. He hasn't been out for 2 years because she convinced him that if he went out in the fresh air he would catch a chest infection and die. It is very very frustrating, as you say.

    In your case, if your mum has been sectioned (my mum was also sectioned in the past) they may well decide that she is not able to look after him. I don't know what the procedure would be in that case. Nor do I know about what would happen money-wise to pay for your dad's carers. I arranged for carers to go in, and they all sounded like a nice bunch of people to me, but of course as far as mum was concerned, they didn't do anything properly: they washed-up wrong, they dusted wrong, they shaved him wrong, etc. etc., so the care has stopped and she now does everything for him while at the same time complaining non-stop that she is the one who has to do it because there is no one else.

    Anyway, the best of luck. Let us know how you go on. I can imagine a very similar scenario happening to my parents in the future.

    LS
     
  20. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    Hi D,

    I think you just about hit the nail on the head. My mum always has to hijack any kind of crisis and turn into into a drama for herself. She needs the attention. Oh god, the situations I've had to deal with in the past. Like the time my dad's best friend died and mum forced my dad to boycott his funeral with her because the widow's request to send money to a charity instead of buy a wreath offended her! "How DARE she tell me what to do with my own money! I was his friend and if I want to buy him flowers, then I will!" She ended up tearing the sympathy card she'd bought for the family into pieces and boycotted the funeral. I ended up telling everyone that mum and dad had both been struck down by a mysterious bug and I was staying home to look after them.

    I have been to my therapist today (I've been seeing one for years mostly due to childhood trauma caused by mum) and he gave me the choice of either cutting back communication with her or increasing my anti-depressants and anti-anxiety meds, so I am going to do the former. I actually told her that my doctor has recommended I don't stay up late so often to Skype people, so I won't be on as much and she accepted that. (And then immediately hijacked the conversation to talk about HER health and how it was much worse than mine :rolleyes: )

    LS
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.