Copd mental changes

Hi, I'm in desperate need for advice. For that I need to tell the whole long story that includes my mothers (82 years) sickness.

My father (83 years) has copd in the last stage. He is also diabetic, has heart problems, osteoporosis and a ulcer that regularly bleeds. My husband and I moved to my parents in January 2015 to help my mom and him. Many times we thought the end is near. At one point he was constantly in delirium seeing people and things that aren't there. But he got over that and could cope quite well with a lot of help. My father is incredibly independent, hating beeing dependent on my husband and me. In September my mother fell off the stairs, broke several bones and has gone since then through a lot of difficulties including a open tennis ball big bedsore, clocked Arterie in her leg, complete incontinence etc. she does not want to stand up anymore.

My father became very aggressive short after her fall, insulting my husband, trying to hit him then doing the same with me. Screaming and raging. He wanted us to leave. Started talking bad about us in front of my mother neighbours siblings and other family members. After taking care that some one will look after them, we had to leave. I went through a nervous breakdown but recovered. My mom gave up since then. We visit her daily but most of the time my father puts an enormous pressure on her, that she needs to stand up must gain control over her life, must work and write. It's awful! Most of the time she says no and pulls herself more and more back in herself. She hardly eats and is becoming very confused. But sometimes she agrees just to quiet him up. The moment he is out of the room she tells us that she does not want to fight and be please left alone.

Yesterday my father told me that I am standing in her way to become healthy. I sing with her, we read poems I tell her stories from work, comb her hair, massage her legs etc. the only thing she eats are my soups.

I'm telling this whole long story because I have no idea how to deal with this situation. It seems my father hates me. But I know it's not really him. He can hardly move screams out every breath gets regular panic attacks etc. but he has an extremely strong will. It keeps him up. Most days he manages to get dressed and sometimes goes out with a driver. He wants to move with my mother in a small cottage getting a nurse in once a day and about 5 hours drive away from us. There is no way that can work. He has a carer sleeping at their home and my mom has 24 hour care. Plus her only wish is to be near to us.

My father refuses to celebrate Christmas and would prefer never seeing us again.

We now decided to skip the visits for three days and will go and visit my mom on the 24th. My father refuses a mental check up. He is absolutely sure that he has no mental issues. He has lost track of time, sometimes gets little scary stupid attacks that are frightening, always again is completely astonished hearing about his health situation, has no relationship to reality concerning his health and daily life. Learning after almost every doctors visit that he will not recover from copd but everytime this news is completely new for him.

Same time he seems to have all under control, seems reasonable and mentally fit. Does anybody know about similar experiences concerning mental health? Is there anything I can do? How must I react? How can I protect my mother? Where does all this bitterness and dislike come from? He now changed his very good doctor because the doctor does not react to any pressure. He is now back with his old doctor who prescribed wrong and out of date medication but adores my father. He wants my mom also to change doctors. He told her yesterday she must go back to hospital if she refuses to stand up. He is absolutely sure and convinced that she needs him as a guru (his own words) to force her out of bed. Sitting is already so painful for her that she screams. Her left foot has hardly any blood flow and she can't feel it. She hates standing up gets panic attacks and screams in pain. Sometimes she tries to creep away... My husband and I are more or less alone in this situation. Rest of family is far away and no one wants to allow the thought that my father might not be who he used to be and is loosing the plot.

I could go on and on and maybe I'm in the completly wrong forum here. But seeing copd is very strongly involved I hope to get advice or a tip where I can find help.

Thank you for reading all of this.

25 Replies

  • I am so very sorry you ,as a very loving daughter are in this situation , have you contacted social services or had words with their doctor

    I do hope you get the help you need

    Take care


  • Thank you Dorothy, I did talk to the gp but he can't do anything without my fathers permission.

  • Hi catinka

    What a sad, very worrying situation, for all concerned.

    Your father does sound as if he is acting out of character.

    He is probably desperately frightened and worried about the way his and your mums lives are going, and taking his frustrations out on you and your Mum.

    Your Mum has 24 hour care, so that must be a relief for you knowing your mums basic needs are being taken care of, but this situation should not be allowed to happen.

    Many on here will give you better advice than me on where to go for help, all l can say is have a chat with your own GP, or social services.

    I do hope you manage to get the help you all need.

    Velvet xx

  • Hi Velvet, yes it is a relive knowing she is taken care of. I would love to do it myself but the circumstances do not allow it. Thank you for your thoughts!

  • Dear Cocatinka, what an awful situation you are in - I really feel for you. When I cared for my previous husband something similar happened. He had COPD (bronchitis and asthma), heart failure, peripheral vascular disease, and food allergies (white flour, cows milk, eggs). He was being treated by his GP (nebulisers, etc) and I was told he could die at any time. He began to get more and more aggressive in 1998, but seemed to pick on different people in turn (the housing officer, the DSS man, etc). Then it became my turn and he threatened to sort out our problems with a 7lb axe. I left that day for a women's aid refuge where I stayed for three months over the millennium. It was only about four months after I had left that I realised he had vascular dementia made worse by lack of oxygen due to the fact that he pushed himself to do everything, to fight against his illnesses - he didn't know how to cope with life in any other way. He divorced me very nastily, but I never stopped loving him, and always prayed that his GP would realise what was happening and give him some prescription that would enable us to get back together again. But that never happened. He died in 2003 aged 76, of heart failure, after years of pushing himself too much.

    Praying for you that you find a better solution. Perhaps you could ask to see his GP to discuss your concerns about your father - even if the doctor doesn't tell you anything about him, the doctor will consider how you perceive his behaviour.

  • Dear Erengedal, that is so so sad and I feel for you! It's scares me that it took 5 years. It sounds very much like my father and I wonder if one can fully recover beeing hated by a person one loves. My fathers good gp says he can't help him if he does not want help. And he would need to get tested on any form of dementia.

    Thank you so much for sharing your story. It helps to know that others experience similar situations.

    I hope you could recover from loosing your husband in such a destructive way.

    Wishing you all love

  • Thank you for your kind wishes, Cocatinka. I moved to South Cheshire for work in 2001, and met a lovely man at my new church. We got married in 2010, and I have never been more happy or contented in life than I am now, despite my COPD diagnosis.

    I was able to forgive my previous husband because I knew that he was very ill and was not completely responsible for his actions and mood swings. I try to remember all the good things he brought into my life in our first fifteen years together, rather than the awful last few years.

    I do hope your situation improves soon, and that you and your Mother have the strength to cope through it all.

  • Hello cokatina. I am so sorry that you are going through this. Reading it very carefully it does seem that your Father has some form of dementia/ alzheimers. Especially as the aggression is accompanied by everytime his doctor explains the state of his condition to him it is as if it is the first time that he has been told this.Erengal's reply was very good.

    So, you need help for you and for your Father and especially your poor Mother who just needs some peace.

    Unfortunately, your Father's treatment of your Mother could amount to abuse. Obviously not intentional because of his health issues, but someone with his issues really should not be in a position to dictate and affect the life choices and treatment of another to their detriment.You really do need help to deal with all of this before it causes your own health to break down.

    Speak to social services and Age Concern please. I am sorry that I can't be of more positive help.

  • hi stillstanding, thank you for your support. Just contacted a nurse who works a lot in hospice and might know how to help.

    erengals reply describes pretty well the situation. But I can't leave my mother alone with him. And same time it would break her and his heart separating them.

  • Hi, I do so sympathise, my elderly mother hallucinated and was diagnosed with paranoia towards the end of her one point her GP asked my permission for her to be sectioned. She did not have dementia I was told, but she was very aggressive physically and mentally....especially to me and accused me and one of my daughters of many things.

    Her friends and carers were targeted too, but I think being her daughter I took it more personally.

    But her GP and social services were extremely good and she was admitted into hospital after a lot of persuasion...but obviously she had to go of her own free will. Even at 95 she was physically strong and aggressive.

    One reason for this I was told was that she was not drinking enough and the dehydration was affecting her brain..

    But your situation is more difficult than mine as your mother is at I right that you do not live in the UK. Here Social Services would help.

    A doctor has a duty of care to both your parents and to you also.

    What does your GP say of the situation you find yourself in?

    Do you have a religious minister who could help...the chaplain visited my mother to try and put her mind at rest.

    My father even after he had a debilitating stroke used to shake his fist at me if I didn't do as I was told....he had breathing difficulties too after a lifetime of pipe smoking.

    I would contact your own GP as it is obviously affecting you and your husband and explain the situation....take care and thinking of you.

  • Hello knitter, thank you for sharing your experience. We live in South Africa and social service can be frightening here sometimes. Your advice with a religious person is wonderful. My parents both very much trust in God but are not actively religious. But there is a Sangoma who both made good experiences with. He mainly listens and does energy work. I will ask him to come and maybe help my father to find peace.

    I am so glad receiving all these replies as they give me courage and help me realize that other situations and life's are not easier but often far more challenging.

    Thank you

  • Hello, we are staying in South Africa. When she was in hospital her gp advised us urgently to get her out because the unfamiliar surroundings and the trauma made her get extremely confused. She also loves my father a lot and he her. That makes the situation pretty heartbreaking. On the one hand she wants to get away but if she does not see or hear him for a few hours she gets worried and terrified. She wrote him love letters from hospital always more concerned about him as herself.

    I would like her to be with me or in a special frail care. But can't do that without his and her allowance.

    I contacted a nurse I heard about who is experienced with difficult situations in hospice.

    This is so helpful getting all this feedback.

    Have a wonderful and peaceful festive season.

  • Hi, I do feel for you. Which country are you in? I'm guessing the U.S.

    It does sound as though your father has a form of dementia. When people get this they can get stuck in one part of their personality - in your fathers case fury anger & paranoia.

    A terrible situation for you to be in. And you poor mother. It sounds as though she is suffering abuse from him however well intentioned it seems to him.

    If your mother is properly cared for she shouldn't have a large pressure sore

    Is there a chance you could make an appointment with the decent doctor to explain and ask advice?

    In the UK we had procedures for the protection of vulnerable adults. A person can be declared as not having 'mental capacity' so someone else can take over legal responsibilities. This would need medical support though.

    There's also the possibility that he has a urine infection. In the elderly these can present as dementia.

    I don't think this has anything to do with copd although I'm no expert.

    Thinking of you, let us know how you get on and I wish you a Christmas as happy as it can be under the circumstances.

    Peege xx

  • Thank you peege, his gp is also pretty sure he has a form of dementia. But my father refuses to get it checked as it is a unbelievable insult for him. His mind is his power.

    My mom got the sore in hospital. It was almost healed

  • Oops... Hit reply to fast.

    It was almost healed at home but she needed to get back to hospital where the wound got badly infected and needed a operation. It's open now and a machine sucks out the dead tissue etc.

    thank you for your thought.

    Wishing you also a good and peaceful Christmas


  • Hi cokatinka, I have reread your post again and you say your father has diabetes and an active stomach ulcer apart from the COPD. My father also was diabetic and had continual bleeding from his stomach, he found keeping his blood sugar levels stable difficult, and this would affect his mood and he often shouted at my mother and suffered panic attacks.

    Is your father's sugar levels stable I wonder , does he test himself regularly?

    Just a thought.

  • I am wondering about his medication. Some people have tremendous mood swings when taking prednisolone, I had terrific rages and was hateful to those around me until my nurse realised what it was.

  • Oh he does take prednisone. And in the last months we often had to increase the dose up to 12 tablets.

    That would explain a lot. Which medicine are you taking instead? Thank you for this!

  • Hi cocatinka, I can get very irritable when I take a high dose of prednisolone too, it may also affect your father's blood sugar levels.

    Just be sure to take care of yourself, and remember don't blame yourself or feel have done everything you can for them.

    My mother in law lived in South Africa, we lived in Zambia and spent part of our honeymoon in Cape Town....a beautiful place.

    Take care

  • Toci - you could be right there. My husband was diagnosed four years ago with a very rare Lung condition IPH. Very little is known about it - no prognosis & no treatment but he did take low dose Prednisolone every day & higher dose if he had an exacerbation. Sometimes he was really moody - something that he had never been before & nothing I couldn't cope with but it was so unlike him.

  • I don't take one instead. My consultant said the only difference would be that any infection may take a couple of days longer to clear. Please don't think of stopping them without medical advice though.

  • No I would not do that. What a pity I was hoping for an alternative. He needs them to survive. He has a chronic infection in his left lung and it's not going away. That's why he so often must increase the dose for a few days.

  • There may be an alternative, it is just that I was not offered one. Please do speak to the doctor.

  • It sounds like a complete nightmare. I can't really contribute anything of much use, the only thing that came to my mind was that if your father lacked 'capacity', ie. It was decided that he could not make rational decisions about important life choices, then you would be appointed to make those decisions. There are tests for capacity, but it is an area that I know very little about.

    So sad for you.

    Let us know how things go.

    K xxxx

  • My heart goes out to you cocatinka. Good advice from you new friends above. I wish you well in sorting this out the best way for all concerned. It's clearly not your Dad's fault but your poor Mum can't keep going through this. Don't forget to look after you too.

    Love cx

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