I’m very tired after years of looking after my husband with copd
Recently he had his appendix removed which led to 7 weeks in hospital and was very weakened and de conditioned, lost about 2 stone in weight and cannot walk or move independently and has indwelling catheter
He was discharged home with a 6 week carers package but owing to Xmas holidays, has not yet had physiotherapy at home
I am doing my beat to get him to eat, drink and have some mobilisation etc but finding it hard
Our closest friends and relatives are all a long way and I’m feeling very sad
I am a retired nurse ( many years ago) which possibly makes it more difficult as I know the problems we are facing
I am longing to get back to my current work which would take me away from early morning in Saturdays and alternate Tuesdays but feel I can never leave him whilst he is so frail
I can see a very scary future being isolated and both of us feeling lonely
My husband , obviously, has lost his sense of humour and most of our conversations are about how he is, with me trying to get him to eat or drink or monitoring his illness
My friends all see me as a “coper ” but I feel very inadequate at present as this is too difficult
I would welcome any comments
K
Hi Kay,
Welcome to the forum, not surprised you are feeling the pressure at the moment.
You definitely NEED to keep working, for your own sanity. Your hubby will benefit too, as you will have had time apart and a Caree’s wellbeing is inextricably linked to a Carer’s wellbeing.
Have you had a Carer’s assessment to see if you can get any extra support for hubby to allow you to keep working? Would it be possible to jiggle his current care visits so he has more on the days you are normally working and less when you aren’t? If he doesn’t have a pendant for summoning help in an emergency, then that might be worth considering.
Once he exhausts the rehab package, a care package ( funded by social care/ self funded depending on circumstance, could enable you to keep working.) Plus other sharing his care, means he has different people to talk to.
Melly1
Hello Kay welcome to the forum
My circumstances are different to yours. However I understand what you are saying re friends and some family saying you are a coper. I love my sister to bits, but when she tells me I am ’ doing marvellously’ it takes me alot my time not to say its not how I feel. Some acquaintances say similar, but I do tell them that weeping all the time won’t help, but it doesn’t mean I’m not feeling the pain of whats happened.
Thought it may help you emotionally to hear that I, at least understand that sometimes well meaning people just do not know what to say, so tell you what’s easiest for them. Not wishing to sound harsh.
I have a sneaky feeling that people describe you (and me!) as managing marvellously, brilliantly, a coper etc. etc. so that they can excuse themselves from helping further, it’s really all about them, not you!!
Can I ask how old is your husband, and how bad is his COPD?
I had major abdominal surgery, and although it was very uncomfortable to start with, moving around, albeit with the stature of neandearthal man, really helped. Just a shuffle would help the blood circulate and the swelling reduce significantly. Is he taking any anti inflammatories for swellilng…or does the COPD prevent much activity at all?
How old are you? Obviously still able to work. Please find a way to keep going with this, just to maintain your sanity and give you some sort of suupport network outside the home. I wish I’d done this!
Thank you everyone who replied to my post since writing this my husband Tom has taken a turn for the worse
He has a chest infection and renal complications
I have been told by the GP that he may well be at the end of life
Tom has said he doesn’t want to go to hospital and I am prepared to nurse him at home till the end so this is where we are now
Being Xmas everyone is busy or away and that includes friends and community nurses and it’s just me, him and the carers twice a day
The GPS have given me fantastic support by phone
Two of them rang me today
They have sent a referral to the palliative team and district nurses
Tom is 83 ( I’m 76 years old )
We’ve been married 45 years, no children but Tom has a daughter from his first marriage
She is lovely and rings every day but lives in Scotland and we are in the south
Yes I realise my difficulties in asking for help have got me where I am now but it’s who I am to put on a brave face and not let others see me distressed
Tom could possibly make it through ( he’s come through some bad times before) but I think he may be too weak to get through this
I spent last night just lying beside him listening to his laboured breathing
Being alone in this situation is very difficult but at least I have no one to distract me from giving him the care he needs
If he makes it through then I’ll start wanting to get back to work again
But in the short term I’m just focusing on him and looking after myself as best as I can
I’m reading, watching a bit of T V and eating chocolate but also eating “real” food
I suppose it makes me realise that I’ve been preparing for this for a long time
I think a lot of you out there will know what I mean
Writing this has helped a lot and again thank you for your replies
I will keep posting
Kay
Kay, A
I’m very sorry to learn how poorly your husband is. Ask your doctor is he has made a Fast Track Application for NHS Continuing Healthcare. This should enable your husband to have all the care which he needs, at home, free of charge, not just a couple of visits.
Do you have a hospital bed to make nursing him easier? This can be arranged quickly, without charge, should it be required.
I know how hard my next suggestions will be.
Google “Signs of Death” so that you understand how gradually, the body shuts down. You will find some gently written articles which will really help.
Finally, consider which funeral director you will use when your husband needs one, in advance.
Ring them up, explain the situation, and ask for the support you need at that time.
I did this for my mum when she was gravely ill, so much easier than arranging it after a sudden death, as I had to do for my own husband.
NHS Contuing Healthcare ?
Main thread :
Section :
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**_Not eligible for CHC but may be so for NHS funded nursing care ?
https://www.nhs.uk/chq/Pages/what-is-nh … -care.aspx
Free and impartial help with money, backed by the government | MoneyHelper
Thank you Bowlingbun
We have no room for a hospital bed which is sad as he is getting sore without a ripple mattress and electric backrests would be a great help
I have been referred to the palliative care team and will ask for hospice care ar home
My main problem is I can’t access most of these things because of Bank holidays and weekend
They are all on skeleton staff and have overbooked their home visits
No OT or physios around
Once the weekend is over , I will pursue the care he needs
Tomorrow I’m expecting a district nurse and will ask her about continuing healthcare at home
At present he is on an enablement package
If this truly is end of life care ,I will ask for hospice care at home
He has not had a holistic assessment since his condition deteriorated
I did read signs of death online but,I know this sounds strange for a retired nurse, I keep changing my view as to whether he is at the end of life or just very very ill
I am just disturbing him as little as possible but also trying to follow his needs
As I said Tom is very resilient and his symptoms and levels of alertness vary from hour to hour
Thank you again for your advice
At present I will just have to wait and see what ensues
Your reply meant a lot to me
Kay
Hello Kay
Just to say that we are here with you at this difficult time. It’s funny how real nursing is less wearing than caring isn’t it? I’m sure you are nursing Tom well, but do remember just to sit occasionally and hold his hand and talk to him.
Do try, if you can, to be kind to yourself as well. Exhaustion won’t do either of you any good, and there is always 999 or 111 .
If you needed someone to talk to at this lonely time the Samartians are there 24/7 too 116 123
Xx
MrsA
Just to suggest you ask the GP to get the local Occupational Therapist to contact you urgently to see if they can fit a an electric mattress riser on your existing bed. We were lent one free by the OT team for my husband and it came very quickly.
I am sorry to read how unwell your husband now is. It really is hard to set things up at this time of year and I am glad your GP has been responsive.
Fast Track Continuing Healthcare should be arranged within 48 hours of being requested. Ask the GP tomorrow.
May I just say that it could be well worth contacting your local hospice right away. Not everyone who has hospice care is actually at ‘end of life’. When my husband had hospice at home care for his end-stage cancer some years ago the hospice nurse said that sometimes end-of-life hospice care turned out to be a ‘false alarm’ so to speak, and patients rallied, or at least, had a substantially extended end-stage.
So I would contact them now, and see what they think about starting to provide some hospice at home care - I found they worked in tandem with the DN etc, and some days it would be a hospice nurse arriving, and some days an NHS nurse etc.
As you will know from your own professional experience the only certain thing to be said is that ‘no doctor carries your dated death certificate around with them’…in other words, patients leave this world ‘in their own time’ and often against predictions, one way or the other.
Life is both incredibly ‘fragile’ where ‘one last morbidity’ can tilt the balance…and, quite opposite, incredibly resilient, where ‘inner strength’ can keep them going long beyond what is ‘medically reasonable’ to expect.
What would your husband like to do now, do you think? Do you think he is ‘ready’ or is determined to stay with you a little longer? It can make all the difference. That said, it can be VERY painful for us to ‘let go’…I think my husband was far more ready to leave this world when the time came than I was to let him go…
I do hope that, whatever happens, it happens - or doesn’t - ‘peacefully’. Do you think his daughter understands how close to the possibility of losing her dad she is? ‘Denial’ is sometimes simply ‘ignorance’ - as in, you, as a medical professional, may realise how close he is, but she may not??
I wish you as well as possible at this difficult time …
Thank you Jenny
Sorry it has taken so long to reply
Tom is certainly putting up a good fight and even the GP said yesterday how much better he seemed
His respiratory nurse is coming tomorrow to discuss his wishes and to help us look at a pathway of care when he needs it
I favour hospice care at home but this may not be possible in our busy town
You have had experience of this and know how things fluctuate all the time
My main problem is loneliness because my three dearest friends whom I had always thought would be here if this happened, are all away with problems of their own
People are texting and ringing up but we’ve had very few actual face to face contact with friends and family
I ‘m trying to look after myself through this but there seems to be an almost constant onslaught of health care professionals in and out and deliveries of supplies filling up my only spare room!!
Hoping to get rid of some unwanted stuff tomorrow!!
My stress at all this spills over and, at a time when we should be gently enjoying each other’s company , I’m rushing around answering doors, phones etc! And that’s awful and makes me feel guilty
I am determined this has to stop but I’m constantly wavering between wanting to let him rest and just “be” to wanting to get him rehabilitated to his former self
And, of course, the heath professionals can’t predict as you say
Yesterday he was wanting to use his computer, then in bed at night started coughing and choking
He’s peacefully asleep now and I’m turning over the days evenrs
His daughter is aware, that she may not see her Dad again as she lives in Scotland but if the end is in sight, she would fly down
She phones daily but sometimes I’m too busy and hers too tired to talk much and that’s sad
Thanks again for your really helpful comments
And thanks to everyone else who have sent advice
Kay
Kay, it certainly sounds like an “invasion”.
Do you have a garage? If you had some large “Really Useful Boxes” all the spare stuff could go in the garage. It would be clean and dry, no risk of vermin or contamination, then you could get your spare room back!
When I had some house alterations, some of my stuff sat outside in all weathers in these boxes, but came to no harm, but I wouldn’t recommend it for medical stuff!!
Yes, I do remember that feeling of my house being in the middle of Piccadilly Circus!!! But I also remember the ‘quiet times’ I got, usually in the evening, after my husband had been ‘settled’ and I could just sit beside him, reading, and knowing he was still lying there sleeping/unconscious (never sure which), and hold his hand, and hear him breathe. It brought us back together again.
It’s a hard hard time, no doubt about it, and somehow you have to ‘make space’ for yourself and your husband even if it’s in the middle of the perpetual Piccadilly Circus…
Hello everyone
It’s been a little time since I last posted anything
As some of you have advised, my husband is being fastracked for continuing healthcare and the hospice team is getting involved
However it is impossible to predict how and when his health will decline to the “ end of life” stage
He still is not eating but is still alert although as the day wears on, he becomes really exhausted
His hearing seems to be affected which means when I speak to him m, I have to slow down and speak very deliberately and that has changed the dynamics of our normally chatty relationship
I feel incredibly lonely as all my friends seem too busy with their own problems to visit
I arranged a little birthday tea for a friend last week but have not had any contact with the three fiends who can since then
I am so sad that so few of my friends “get it”and much too proud to beg people to visit
If this is going to be a slow decline, I will need to get back to work but there doesn’t seem to be a package of care that covers one whole day to allow me to do I day of work per week
The hospice manager said it was unprecedented for someone of my age( 76) to want to return to work
I suggested she looked at the recent TV programme of the Four Dames, Judy Dench and co
I have never experienced such exhaustion and loneliness
Going back to work would help the loneliness and sense of isolation
A friend is visiting in 2 weeks time to give one day off to meet an important client
But no one else has offered just to sit with Tom
I think they find his illness daunting and are too anxious about even seeing him
So on we go with health professional in and out using 5 yellow folders and very soon we will be changing carers and have to get to know a whole new team
I’ve got used to our carers and they have been very kind and supportive to us both
Thank you everyone who has sent comments and advice
Kay
Hello Kay.
Most people simply don’t know what to do or say in such situations. They probably have assumed you are coping marvellously, or want privacy, and don’t know you need their support.
Rather than presuming what people think, there is nothing wrong or ‘proud’ in simply saying to your friends "I am exhausted and need a break. Could you possibly help out by sitting in for an hour or 2?
And rather than his daughter waiting right until the end when he may not even be well enough to acknowledge her, why not ask her down over the day you want to work. That way she can have some quality, private time with him too.
Isolation and exhaustion do tend to blur our thinking and let negative thoughts creep in. You deserve a bit of support and no one will think badly of you for asking
Xx
MrsA
The Continuing Healthcare package should allow you to KEEP the current carers. They should offer you a Personal Budget to fund the carers you want.
I believe Fast Track should activate everything within 48 hours. Has this happened? It should enable you to have time off when you need it.
If you have time, look at the CHC “Framework” which lays down exactly what it’s for, how it works, etc.
Heilo everyone
Thank you Mre A
I took your advice and reached out to three friends yesterday
One seems to have backed off a bit since her birthday tea
In all fairness to her, she is emotionally feeling very low herself
That’s why I arranged a little birthday tea
She’s 20 years younger than me and i usually support her
The next one I spoke to is very busy with grandchildren but is keeping in touch and has offered to come if I need anything
And that was a very sincere offer
The third one is coming to see me tomorrow
I hope when she gets here she will size up the situation and offer to come again
I feel a bit like Goldilocks and the three bears
On a serious note, I don’t think Tom can go on too long like this
We are due to change carers at the end of the month
Both I and the regular carers think this would be a detrimental step and I am wondering if the NHS continuing care would pay to continue with the agency who is providing the six week package
I don’t really know who to ask but thought I’d ask the District nurses to liaise with palliative care and
GP on Tom’s behalf and request this
Does anyone have any advice on this
At present he is on a 6 week early discharge re enablement package
Again thanks to all of you who’ve responded
Kay