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Very tired after years of looking after my husband - Page 2 - Carers UK Forum

Very tired after years of looking after my husband

Tell us a bit about yourself here.
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, 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_18111 wrote:
Fri Jan 11, 2019 10:04 pm
Hello everyone

I am so sad that so few of my friends “get it”and much too proud to beg people to visit
..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

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
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