Very tired after years of looking after my husband

[Kay_18111]

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

[Melly1]

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

[Pet66]

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.

[bowlingbun]

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!

[Kay_18111]

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

[bowlingbun]

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.

[Chris From The Gulag]

NHS Contuing Healthcare ?

Main thread :

https://www.carersuk.org/forum/support- ... inks-32532

Section :

Not eligible for CHC but may be so for NHS funded nursing care ?


https://www.nhs.uk/chq/Pages/what-is-nh ... -care.aspx

https://www.moneyadviceservice.org.uk/e ... ntribution

[Kay_18111]

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

[MrsAverage]

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

[Dusty]

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.