Hi, I’m Richard and would like to connect with other people, fellas preferably who are caring for a partner with advanced COPD. I feel isolated, frustrated, I’m exhausted trying to hold down a job and just want to share experiences and learn from other people in a similar situation.
Welcome to the forum. Are you doing everything with no help?
Hi Richard, welcome the forum.
I care for my husband who suffered a stroke 2 years ago and then a cascade of other health issues including diagnosis of prostate cancer a year ago. Can’t compare notes on dealing with COPD.
We had to close our business when G had his stroke and it’s been a terrible adjustment for us.
I admire you managing to work and care - I am not surprised you are exhausted. I am tired out just with my load.
Do you get any help or are you trying to struggle on alone? @bowlingbun is always great at giving advice on what support might be available and other can advise on benefits etc.
Have you checked out the CarersUK website to do a Benefits Check in case there is something else you may be able to claim? That also has a host of other helpful advice and links.
Why not have a look at the Roll Call thread on here which is where some of us ‘hang-out’ and have a chat, a moan, let off steam and have a laugh. It can be a source of support apart from the particular threads.
Hi Chris, thanks for taking the time to respond. It’s difficult to know where to start without writing a book, that would surely send you to sleep, so I’ll try to be brief. Before I start I see that you live in South Glos - we have something in common already, I was born in the outer suburbs of Bristol, which at that time was part of Gloucestershire. Much water has passed under the bridge since then, after finishing school I took a job near London, then worked in the City after which I lived in South Africa for 30+ years. We now live in France, deciding it was time get out of SA before it collapsed totally into crime, chaos and incompetence and made it here before the Brexit deadline. Marion is dual British/Swiss and has grandchildren near Zurich - so we came here for her to be closer to her family. My French is very basic but we get by and most people are very helpful - the auto translate facility on the computer and phone usually sort out the toughest situations. But, we’re isolated and through unfortunate circumstances we no longer have contact with Marion’s family. So I turned to the UK for a helpline and the opportunity to connect with other carers…and that’s how I arrived at this forum. COPD used to be called Emphysema and as the disease progresses the lungs provide less and less oxygen to the blood and this is how it became renamed Chronic Obstructive Pulmonary Disorder. Marion has had several minor strokes but suffers from mini strokes, sometimes daily but she can go two or three weeks in between. On this we have common ground! She’s not physically disabled but breathing problems mean she has restricted mobility. My biggest problem is dealing with mood swings and a pretty spiteful temper - I think she has brain damage from the mini strokes but that’s just the assessment of a carer! Do you have to deal with anything like this?
Hi again Richard
Well I am going to have a guess and say either Patchway/Filton area or maybe Downend. Don’t worry - no need to play ‘Battleships’ I lived in Almondsbury for years, then Kingswood before moving out into the countryside. We are right over to the East by the Wiltshire border and can look out across the fields and see into Wiltshire. It causes some issues with healthcare believe me!
You have certainly travelled around. I can quite understand why you chose to move to France. We discussed some years ago moving to Spain. Graham was a Podiatrist before having to stop work after the stroke and we discussed finding somewhere where I could run a Guest House while he did Podiatry part-time, but our finances wouldn’t work at that time. He speaks fluent Spanish and French and we have found that when we are on holiday I start picking up Spanish - although cannot learn it at home!! That would have meant our lives would have been quite different.
We have had several patients with COPD so know what it can be like.
Thankfully Graham’s stroke was fairly mild and apart from weakness on his right side he didnt have many side effects. However, then came the cascade of health issues including prostate cancer and postural hypotension which has badly effected his mobility. He now struggles to get around and his cognitive functions are not good at times. Hence I attend every medical appointment with him and then we debrief on the way home as he forgets what has been said! Thankfully his mood hasn’t changed but he gets upset that he can’t do what he used to or what he wants to do. He had his driving licence rescinded which was like cutting off an arm.
Thankfully we have some amazing neighbours who are concerned and considerate. I do sometimes wonder if he has signs of dementia due to forgetfulness and confusion, but so far test s show not.
One issue is ‘undiagnosed’ PTSD due to a string of issues over the last five or six years and also a major incident many years ago. Several nurses have said they believe this to be the case and we are moving forward to try to get him some Talking Therapy but its a struggle.
Hi @Dickie_Rich and welcome aboard! I’m afraid I don’t have personal experience of caring for someone with COPD but I have worked with carers across many different conditions, and I’m a long-term carer for a number of family members, including my wife, who has a spinal cord injury.
Trying to hold down a job while caring is hard graft - physically and emotionally. It’s manageable for a time, but without a supportive employer it becomes increasingly difficult and wears you down.
Is your wife on oxygen?
Hi Charles, have been busy today, I work from home, in a different country, for an export business owned by a long standing friend of mine. We’ve worked together for over 10 years now and are still friends - so I’d say I’m very lucky to have such a flexible employer. There’s no doubt that we’d never cope in more rigid circumstances. Despite this I’m still tired and pretty worn out, Marion often berates me for not giving her enough of my time - oh how hard I need to bite my tongue! She’s had several small strokes but the COPD is causing ever more frequent mini strokes - we know the drill and usually all physical signs of stroke have passed but I do think she’s suffering worsening brain damage. Naturally any such suggestions are dismissed, but I do think it’s time for her to go on to oxygen, I know that she can’t go back once she starts but a better level of oxygen in her blood stream would surely reduce the frequency of the mini strokes. She’s hard headed and determined - good qualities but not easy to deal with when most of my suggestions are summarily dismissed. I’m sure you’ve heard these comments before but this is where I feel most frustrated. How do you get the patient to recognise how much the carer does? We’re totally isolated without any family or close friends within less than two or three days travel (that’s another story) so we have to carry on as best we can. That’s how I came to this forum - just need to interact with fellow carers and learn how to deal with the many challenges we face. Thank you for contacting me.