Help needed dad with end stage copd and possibly loosing the plot

Hi. I am looking for some help, support, or just someone else who knows how I feel. My dad will be 60 in January. He was diagnosed with copd 7 years ago, finally gave up smoking 3 and a half years ago. My mum gave up work 3 years ago to be his carer as he was not able to do simple things himself. We have gone through winters of him getting infections, spending time on the respiratory ward and not really getting back to the same level. Every infection took him down a run of the ladder so to speak.

I went on maternity leave in August just before I had my second baby. The first few weeks of mat leave it was like having a new dad, he had so much energy and wanted to get out and about in his scooter. He was the best he has been for years. Then he had a couple of weird mood swings and then a sort of seizure. Mum called 999 thinking stroke, they took him in, he had another couple but nothing was ever diagnosed and he was discharged from hospital. His discharge summary said end stage copd. We all panicked but I spent ages searching it and saw that this could still mean years for him.

He has physically been well,he is on oxygen 24 hours a day and millions of other drugs. Then he started to get difficult. He was snappy with my mum, not really himself, had funny episodes where he couldnt talk or swallow. It came to a head the end of October when he was really mean to my mum, she got marched to the doctorby another relative who got him into a local hospice for paleative care to give them both a break. The day he went in was heat breaking, he was sure he wasn't coming out (the only people we know that have been there have been cancer patients that havent come out) he was there for 3 weeks and they assessed everything he needed and the OT came out to make sure he had hospital bed, standing up chair etc to make things easier for him at home. He also has carers twice a day to help mum out, the occasional night nurse and day care as well.

Well he has started to go a bit weird in the head. He sometimes talks likes 2 year old, slurs his words, gets very emotional, won't let mum leave him alone, wants my nan, is generally hard work. Sometimes he is totally confused, rambles about the weirdest things, not really with the world as it is today.

I got to their house Wednesday morning to find my mum a wreck. She had been up with him all night and then he had flipped in the morning, shouting expletives at her, saying vile things, nothing like he is usually. She had given him lorazepam to calm him down but really was at the end of her tether. She telephoned community nurses who in turn phoned her psychologist, supplied by the hospice, who then got him back in the hospice as an emergency case. I was at home with them to help them pack, I had my 2 daughters with me, he could talk to the, rationally, know who they were but then in another breath told me my mum was a witch and told my cousin he wanted to watch fireman Sam as he liked it.

They are assessing him. His psychologist is going to speak to a neurologist to see what they suggest but is anyone else in the same situation? Could he have dementia? Is this the end? He is a proud man, he would never swear at me and loves my mum more than anything, this is not him.

He is permanently on steroids, never goes below 20mg, have the drugs addled his brain, will we ever get him back?

I just want to go to the doctors with something for them to look into. If we can't get him back then having a diagnosis might make it easier to deal with. We then need to look into whether he can come home or whether we need to look at residential care.

I worry about my mum, she can't take much more. She is watching the man she loves fall apart and I need to support her,he won't be here forever but I expect to have her for a lot longer.

Thank you for taking the time to read my waffley rant.

A very worried daughter

20 Replies

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  • I have no answers here, but this might be something totally different to COPDand I think you need better medical advice and help.

    Please call the BLF helpline on Monday, they are really good.

    Lynne x

  • So sorry to read about your Dad, I would think there is some form of mental health problem going on and it could well be dementia, there is a test I believe that his GP can carry out but I guess the psycologist will be aware of that possibility. There is always the drugs he is taking that could also be causing some of the symptoms in personality change, I am not a medical professional so can't really advise you on this or the drug interaction possibilities. You can investigate the latter through a site called drugs.com for drug interactions.

    You may find a community on health unlocked about the dementia side of the personality changes. Age UK may also be able to help you on this:

    ageuk.org.uk/health-wellbei...

    It must be so hard for you and your Mum to see your Dad go this way. Unfortunately you will have to get input from different sources about his current state of health and symptoms I think and advice on the sort of help available for your Mum and Dad at this time.

    The BLF helpline will be able to help you on the lung situation and possibly with some of the drug interactions also.

    With COPD your Dad will need to try and avoid people who are infected with a cold or the flu virus as his lungs are much more susceptible to infection. Hopefully he will have had his flu shot this year along with your Mum, carers should also be vaccinated to help preserve lung patients lungs against cross infection.

    I am sorry I can't be of more help to you, but I do think you will be able to get some good advice from the helpline and your Dad's medical professionals, Age UK etc. The BLF helpline is open normal working week days 10am to 6pm number is on their main web site:

    blf.org.uk/Home

    All good wishes to you and your family.

    Zoee x

  • Some people react to Prednisolone with mood swings and aggression. Other than that I cannot really identify his symptoms with what I know of COPD. You should ask his GP or the hospice for an explanation or perhaps try the BLF. 03000 030 555 if the number of the British Lung Foundation helpline. They are open Mon-Fri from 10am to 6pm.

  • Hello,

    I too am the daughter of a man with copd and ipf. He is end stage and thankfully hasn't experienced anything like your dad. Yes he can have the odd mood swing and get snappy, who wouldn't?

    I think maybe it could be some medication he is taking. Dad is on loads too. But it definitely isn't right and I really feel for you and your mum. I have two young daughters, 2 and 6 and know how hard it is helping my mum care for dad.

    Dad is on o2 24/7 and is wheelchair bound. He deteriorates day by day but is such an inspiration he never complains. I am glad that you have alot of care to help with your dad's needs but it is not the same is it and it is still very draining both physically and mentally.

    I hope you get some answers and I wouldn't stop until I did. something is clearly going on and once you get to the bottom of it, you may be able to get somewhere isn't it.

    Thinking of you all xxx

  • Hi bubblesocks - What a heartbreaking post. I can understand your dad being snappy on occasion, he will feel everything has been taken away from him and has no control anymore and I think this probably affects men more severely as they are used to being the head of the family and "providing". But what you describe goes far beyond that. Sounds like he may have had one or more small strokes (I speak from experience, as my dad suffered strokes and turned into another person). I can only concur with the other answers here, your mum must insist that his symptoms are investigated more thoroughly as whatever is causing his behaviour needs to be treated appropriately. I do hope you can get the help you need. Libby x

  • Hi Bubblesocks,

    I am in the same place as your Mum, mu hubby is end stage COPD and end stage Heart Failure. I know your Mum will be very gratefull of the support you give her and your Dad. Support is never 'expected' but always very much appreciated when it is given.

    I agree with others, who say stroke and steroid use, may be the biggest enemies for your Dad, I am lucky so far, my hubby usually gets the highs on his steroids, but I have seen the other side, it is not good to watch the one you love and care for being changed into this 'other nasty person'

    But still, please get the proffessionals to look into it, I know from experience, they can 'drop' a patient like a hot potato, once they are deemed to be 'end stage' You can see it on their face, why bother? You tell them, it IS worth bothering, because his health directly affects those around him, including his grandchildren.

    My hubby does not get the oxygen he needs, because he still enjoys the occasionall ciggy, (it;s his choice), everything else has been stripped off him, so the NHS will not supply 02. I can see it from their side, but it's hard watching him when his sats are 70 and dropping, and there is only a fan to help him.

    I really feel for you and your Mum, it's not good watching the man you love turn into a mere shell of his former self, at the end of the day, if residential care is the best option for him, then send him with your support and love.

    It is never good when the brain becomes involved, it changes the whole scenario. I just hope he still feels the love given by his family.

    My father had COPD, he moved in with us at the end, he 'aquired' lesions in his brain, areas where brain tissue had ceased to function, luckily he ran out of breath before he got nasty.

    How is your Mum coping? I know when my hubby goes, I fail to see the need to carry on, I am just that exhausted, probably just how your Mum feels???

    Good luck in the future, love to you and yours, you all need a ((HUG))

    .

  • I am so terribly sorry for what is happening to all of you. From April up until early October this year, my husband (I am his carer and 70 years of age), was having the exact same problems as your dad. He was terribly aggressive towards me, I was like a prisoner, I could not leave the house as he started being breathless, the names he called me were disgusting, I was on this blog time and time again pouring out my problems (which helped enormously as these lovely people were always there to cheer me up).

    Since October he is a different man, and when I look back it all started when he was on steroids, the GP was giving them out like sweeties, non-stop and his hair fell out, he had a thick head of hair, no bald patches at all. He could not remember the names of things and pronounced them differently. When we went to see the specialist for all his result it was found his adrenal gland which apparently produces natural steroids had stopped working due to all the steroids given by the GP. The specialist told him to start reducing the dosage until he stopped entirely. The specialist asked us how many he had taken, luckily I took a carrier bag with all the empty boxes in and emptied them on his desk , he said 'Oh my God'. He said my husband should have been on bone protecting tablets and carry a blue card showing the dosages he was on, he had never been given anything like this by our GP.

    Once he came off the steroids his hair started growing back, albeit like candy floss, and his temper has improved. He has end stage COPD and Bronchiectasis, is on oxygen and nebulisers and Antibiotic emergency packs.

    He has infections every two weeks, we have begged the GP for a two week course rather than a 7 day course to really kick the bug into touch but he refused.

    We saw the specialist this week and when he saw how many sputum tests had been sent off to the hospital for tests he said 'why on earth are you not getting a two week course each time you get this infection'. I told him, the doctor would not give him it. He wrote a letter to the GP telling him what he had to do, and gave me another letter in my hand to enable me to get the antibiotics I needed when we got to the GP's, He could not give me a prescription himself as the hospital pharmacy was closed for the day. Luckily he had his 7 days emergency pack at home so we only had to get another presciption for another 7 days.

    The specialist is reviewing my husband and discussing him having antibiotics in his nebuliser which takes the drugs straight to his lungs so it is not going into other parts of his body where it is not needed. He is also now getting him piped oxygen as well as the portable ones he uses.

    I know it is a long drawn out comment but you never know, if the steroids have caused your dads problem then coming off them could make him the man he was, but there could be other underlying problems. When they are stuck in the house and see their family apparently living their normal lives (they cannot see the strain they are putting us under, my husband told me that it was now all about his illness and not me, I told him if anything happened to me he would be put in a care home). I have become a prisoner as I cannot leave him, he will not have carers to help us, at one time I was hoping he would be taken back into hospital to give me a rest and some me time. That is how it gets you, my son lives away and I don't see him very much, but we were going to their house for Christmas day, now we are on our own as my daughter-in-law refuses to cook Christmas dinner after 4 years saying it is too much and are going to a hotel for lunch. I cooked it for nearly 50 years and when It comes to me being looked after, we are on our own. It really makes you very bitter and forgotten.

    My husband said that when he dies i will be a lonely old woman with no friends, sitting at home withering away. I have told him, not on his life, I thank god for my health, I do not take tablets apart from asthma inhalers and if that is what he thinks and thinks it is funny to think I will be like that it does not say much about his feelings for me.

  • Hi sweetthing,

    I hardly come on here now, don't have the time but nice to see you again (if you know what I mean!). I'm sorry things havn't improved for you at home, you really do deserve some good fortune one way or another. You are a true inspiration, still caring for your husband despite the difficulties you face xxxx

  • Hi Bubblesocks

    Sorry to hear about your Dad. Dont know if this will help but a few years ago my Mum started changing, she was swearing at my Dad using words she would never do and acting like a child we all thought dimentia . It turned out she had a water infection. Might not have anything to do with your Dad but just thought I would mention it Sue x

  • Hi Bubblesocks i am so sorry to hear of your dads condition and mood swings and my heart goes out to you and your family . My dad has end case copd he has just come out of hospital he has mood swings and can be nasty though he now seems to be suffering loss of memory and confusion there are times when my dad is nasty i just want to explode but i know that its his condition and not him if you know what i mean . I would strongly recomend speaking to BLF they are very good with problems that arise from copd and nice people to talk to as people have said it could be his medication are an infection it could also be to do with lack of oxygen but the people to speak to are BLF of that i am certain i do hope it gets sorted out for you stay strong Bubblesocks and look after yourself as well

  • Hi Bubblesocks -

    You don't say whether your dad has had his blood gases checked recently (ABG's), or whether he was put on Oramorph or similar drugs (a low dose of oral morphine or any other dug aimed at relaxing him, quelling anxiety etc). Also does he have CPAP or BiPAP yet? I ask because the most common reasons for such behaviour at your fathers stage of illness would be either incorrect titration of a drug (too high a dose of an opiate or similar causing hallucinations or feelings of unreality) or serious CO2 retention. Most people at 'end stage' (awful term) benefit from CPAP or BiPAP to relieve CO2 retention. Symptoms of untreated CO2 retention can include any of the following -

    Confusion

    Shakiness or tremors

    Memory lapses

    Sleepiness / drowsiness

    Slurred speech

    Balance or co ordination problems

    Grey tint to the skin

    and if CO2 levels go very high, seizures.

    If you think there may be any possibility of the above, you need to get it sorted out a.s.a.p. or, if he already has CPAP or BiPap, then make sure he is using it correctly, and that the machine is working properly - face mask fits correctly etc.

    If there is any possibility of drugs being the cause of his behaviour, then contact the palliative care team at the hospice and see what they think and whether they can change either his medication or the dosage he is on.

    As neither drug induced or C02 induced problems are unusual in the late stage scenario, one would hope that the obvious will always be carefully checked on and corrected before any psychological or neurological problem is assumed.

    Whatever the reason for your dad's out of character behaviour, I hope it is resolved soon so that he and the family can have some relief. My best wishes to you all, Parvati x

  • This has been so helpful. My Mother has end stage COPD and is a Co2 retainer. She has been becoming increasingly confused, trembling, speech problems and looking absolutely dreadful. Painfully thin too as she doesn't want to eat or drink. She went off to hospital last night for yet another admission. It seems obvious now that she needs to go into a nursing home but is against the idea. So hard when she keeps cancelling her care package at home.

  • Thank you everyone. When he originally had the funny behaviour we initially thought urine infection or co2 retention but they came back negative. I will pass your replies to my mum to tonight and she can then approach it with the care team.

    I will keep you all updated, thank you so much for your support x

  • Do let us know how your Dad gets on. Px

  • Hi bubblesocks. I am really sorry to hear about your dad. It must be heartbreaking for your mum and all the family to see him deteriorate like that. I was going to suggest a urine infection as I know from my dad, and my aunt that this can make people behave aggressively. I don't have anything else to suggest. I just wanted to say I was sorry and please come back and let us know how your dad gets on. Post as many times as you need too. There are some brilliant caring people on here and everyone will do their best to help and support you.

    Bev xx

  • Hi bubblesocks,

    It must be really awful for you & your Mum to see your Dad's condition deteiorate.

    Please do not allow the medics to put it down to his COPD or to diagnose dementia without first ruling out all other posible causes. I see CO2 has already been suggested, also acute infection of any kind can give rise to aggression.

    I have seen too many people wrongly diagnosed with dementia when they have a treatable infection or other condition such as B12 deficency which canbe succesfully treated.

    Please ask for a full set of blood tests to rule out any infection or B12 deficency. Ask for a Pharmacist to review his drugs for any countre-indications or toxicity. All treatable causes need to be ruled out before giving a diagnosis of dementia.

    Please let us know how he gets on.

    Best wishes

    Jo :-)

  • Thank you everyone. Mum had a call this morning to say they had had to sedate him last night as he was so bad. It is heartbreaking. They are wondering if it is an imbalance of something in his brain that has caused it, totally unrelated to his copd. They are consulting with everyone to try and give us an answer but have said he is not coming home like this :(

  • Hi Bubblesocks, I'm so sorry to hear about all the problems you are having - I had some tough decisions myself earlier this year with my Dad.. I don't really have anything to add to all the advice above, except to say don't let your heart or your Mum's be influenced by feelings of guilt when it comes to your Dad's care.

    Good luck with it all and don't forget you are not alone.

    Beth xx

  • I much like yourself am looking to connect with people who are going through the same thing we are. My father is end-stage small-cell carcinoma of the right lung, (Quit smoking almost 40 years ago) with metastasis to right lymph node, trachea, and liver. We have been doing hospice for 2 weeks now. He can't get up to walk. He can barely sit up in bed without assistance. Some days are good and some days are bad. Today was a bad day. Confused, agitated, hallucinations. Calling out to Jesus and beginning to end this. When I approached him, he was pulling at my hair and referring to me as Jesus! My heart aches for him. The strong man who I refer to as Papi, is now a frail, delirious old man. Any advice please?

  • I am living in the same thing in my life wife my bestfriend my dad he has not hit the really bad side yet lots of hospital visit. He has hit stage of he is giving up any help would be grateful need thank you for your story felt as I was writing it my self

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