Hello there. I wonder if anyone knows of support networks for family members of people with COPD?
My father and I were estranged for a very long time (he's a recluse and a recovered alcoholic). I managed to get him to reconnect with me and over the last year we've been building up our relationship since them. Understandably I think he wanted to get back in touch after the shock of his COPD diagnosis.
He's currently in hospital as he is deteriorating quite quickly. He's reached stage 4 and now relies on me to navigate his care needs. We talk on the phone several times a day. This is all very new to me. I live 250 miles away from my dad in Manchester and spend a lot of time on the phone talking to respiratory nurses, his solicitor, the care navigator etc. I'm finding things emotionally very difficult as I want so much to be able to give him some quality of life in his last few months. He gets very anxious and finds hospital life very difficult. I have so many questions. I don't know how his condition will progress, I don't know how best to support him and when I should go down and be with him and how often (which is difficult also with work commitments), I don't know how to navigate dad's finances sensitively, and sort power or attorney etc. I feel very alone.
Does anyone know of any support groups for family members of people with COPD? Or anyone else I can connect with?
Thank you so much for your help.
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smavin
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Hi Smavin, you could try ringing the BLF helpline for advice....they are open during office hours, I know they have been busy recently .....03000 030 555.
I am sorry that you find yourself in such a difficult position but glad that you and your Dad are reconciled
It is difficult smavin as you live so far away but there is help out there. The BLF helpline can advise and there is lots of info for carers plus you can speak to the Solicitor regarding Lasting Power of Attorney for finances and welfare.
It must be quite daunting for you especially knowing that your dad is in hospital and has reached stage 4 COPD quite quickly. He is, I am sure, getting the best care and you can go and see him whenever you feel you want to if your work committments allow.
Try and be strong as it is so good that you are now reconciled with your dad.
Wishing you well and thinking of you and your dad.
Thank you sassy59 - I've been in touch with his solicitor who has been very kind and pulled out all the stops to go and visit him today, which is good. I think it's definitely a priority to get the power of attorney sorted so dad can have some peace of mind. Thank you for your kind words.
Hi I am so sorry about your poor dad and that you are in this situation. Forgive me for asking this but has he been given a terminal diagnosis? In that case he should have a care team around him consisting of a doctor, consultant, nurse etc. This is patient centered and focusses on making the time left more comfortable for him. If he is allowed home then he must have a care package in place first. The hospital or doctor should organise this. He should be given palliative care which can incude time in a hospice (which is much better than a hospital).
If you can, get Power of Attorney but he has to agree to it. If he won't then he would need to be deemed incapable of the decision. I know from personal experience how important this is as it give you legal powers over his affairs. You would need to speak to a solicitor and you do have to pay for it.
I would go and see him as often as possible as he would find it a comfort you being there. Can you get special leave from your job? Most employers offer this.
Hi coughalot....just to say you can fill the Power of Attorney forms on line if the persons affairs are quite straightforward....much cheaper.
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We had all that put in place that coughalot has mentioned for my mum. And one of my brothers is power of attorney for my mum and now for my dad my mum came home but sadly she passed away after 2 days but at least she was in the place she wanted to be. The hospitals are very helpful in these situations. Thinking of you take care
Thank you coughalot2 - we are indeed sorting power of attorney as a priority now. Yes he is terminal - I managed to get through to his respirator nurse yesterday and she said we're looking at months now He can't go home because his house is in such a state. We were estranged for many years and he won't let me go into his house. His care navigator told me he has no electricity, hot water or heating. We're trying to get that sorted and until then he's in a step down bed but he's very bored. Hoping to move him on to hospice care after that but he's quite frightened of the idea. I had an ex's mum who was in a hospice and they were wonderful so I do think it would be a good decision for him x
Hi Smavin, you have had some good advice here. You could also try Citizens Advice or Age Concern if you have branches nearby. Some people have received great help from these organisations. They should be able to help with all your technical problems.
Do you have support for you in this difficult situation? I hope you're not having to face this alone. It's great that you and your dad have reconnected, but you must remember to look after yourself too. You have found a good site here though. Any time you have a question, want to rant, or celebrate, there will be someone here to listen and offer support.
I hope you get the answers you need and can feel less anxious about everything soon. Let us know how you get on. Very best wishes to you and your dad. Jan
Thank you Jan - my husband is fantastic support and my sister is around - I'm trying to remind her of the gravity of the situation though. She can get very wrapped up in her own life and I worry she will regret not spending time with dad when he's gone - it's time you just can't get back. Age Concern and Citizens Advice are also two great ideas. Thank you so much x
Sorry to hear you and your dad are having such a difficult time but so glad you are both reconciled. Very good advice already but please look after you too and come on here if you need/want to.
Hi Smavin, I care, well best as I can, don’t always feel it’s my strongest quality, for my Mum.
She moved down to be near to me so I could help her which was fortunate.
I have found the hardest thing to face is the powerlessness I have to actually stop the progression of COPD for Mum. When she moved down she had nothing in place at all care wise, and I had a crusade and a cause to get the proper help. I was angry and I am a 50 year old bearded 16 stone biker with a huge loud motorcycle and am very capable of expressing my irritation without being aggressive or inappropriate; although I have to admit I know how to be intimidating in a quiet brooding way to get people moving. If I have to.
I also have a lot of qualifications including a degree and have also worked in the health service and know how hard it can be to get anywhere. But I was unprepared for how hard it was to get appropriate care sorted.
But eventually after a lot of assertiveness and the occasional growl, one day I realised that I had got Mum everything I could; Respiratory Team; Community Matron; Consultant; every medication available; and I could not be angry with the GP or NHS any more because it was all there. And I knew it was because I probably know the NICE guidelines by heart on this, as I have ranted on here about frequently!!
And that was when I realised that I was powerless to stop this; powerless to make her even a bit happy some days; I can just do what I am doing and as you said about your Dad, try to give some quality of life.’
I am watching my Mum deteriorate on a daily basis and it is the hardest thing I have ever had to do. But also probably feels the ‘rightest’ thing I have ever done, letting her know someone is there to help, do the crossword with her, watch crap tv with her etc etc!
It is hard to manage and I am lucky to have an awesome wife, by far my better half, who is there for me. When I let her be.
Hmmm, that’s how my Mum is!!
Mum has just rang after that last sentence I wrote, she can hardly talk so I am off to see what I can do.
You are doing all you can and that’s all we can do. Your Dad will be very grateful I imagine.
And believe me, a lot of people do nothing to help.
Take care, get support here or wherever you can (where people are sensible ish) and look after you. Too.
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He can't go home because his house is in such a state. We were estranged for many years and he won't let me go into his house. His care navigator told me he has no electricity, hot water or heating. We're trying to get that sorted and until then he's in a step down bed but he's very bored. Hoping to move him on to hospice care after that but he's quite frightened of the idea. I had an ex's mum who was in a hospice and they were wonderful so I do think it would be a good decision for him x
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