Please don't judge me

New to Carers Connect
1

My husband, 80, frail and disabled, got sepsis almost a month ago. We have had a rollercoaster of ups and downs. We are due a hospital assessment tomorrow, with a view to him being discharged. In the last month, he has become unable to walk, lost a lot of weight and is incontinent with no bowel control either. He cannot stand or even move himself unaided. He has become a little absent minded, but other than that has his full mental capacity for his age. He cries a lot and wants to come home. He is old and suffering and that breaks my heart.

Tbh, I love him but I’m dreading him coming home as he can be quite difficult. Go back 30 years and I was the classic battered wife. We got through it, but time has a way of grinding one down. It’s like he needs someone to hate. He has always been that way, it was his boss, or the programmes on the tv, or anyone he could set his sights on, but the focus is now on me more than ever. I have no support. I have no friends, as he has over the years successfully isolated me. We also have no family or living relatives. Nevertheless, by nature I’m an optimist and a survivor whilst he is a pessimist and victim.

Prior to the sepsis, I was mentally and emotionally close to rock bottom and stressed out beyond belief. I had a stress related heart attack beck in 2009, so I do my best to cope and look after my own wellbeing. I’m 73 and good for my age I think. My only outlet is a 30 minute walk each day with our dog. I also do the shopping once a week. Hubby doesn’t like it, but I do it, as even a chat at the till is precious to me.

I feel so mixed up. I love him and feel great compassion for him and a part of me wants him home, but I know if/when he comes home, I will quickly be back to my own living hell. I am afraid of the future and just don’t see how I can cope. The irony is, until they know him, folks think he is wonderful and I feel guilty for even writing this here, I’m a private person, but if I don’t tell someone I’ll go mad.

2

I wont judge you because I can relate to a lot of your post. My husband is mega difficult and controlling and he is 83 - I am 60 and his carer.

I am sorry you are isolated but this is what happens in abusive coercive control relationships. My husband isolated me totally and until we moved we lived a mile from the village and I did not drive. Thankfully we live in a more built up area now, and I am able to get out for relatively short periods although he does not like it.

My personal advice would be NOT to have him back or at least if you do, make sure you get all the help you need. How will you cope if he is incontinent? He could go on for years…can you really cope? I wonder if finding a good counsellor who you could talk things through with might be a viable option? Could you contact your GP and tell him what you have posted? YOU have the right to a life too and it sounds as if physically you are not going to be able to cope with him at home.

3

Aflreda
My goodness me there is no judgement on you at all, it is on him.

As Helena said, speak with your GP, it sounds like he qualifies to be in a nursing home and if you can get him into one then it will be a massive heart and soul search for you regarding what Helena has said.

Do get a social services needs assessment done.
In a home he will get all the care that he needs, a team of people to see to him, rather than just you run ragged and being given a life of hell in ‘gratitude’ for it being his punchbag - you should not be anyone’s punchbag.
You can visit him and if he’s abusive you go home.
You deserve better in life.

Split the issues apart, you love him, he mistreats you, he is vulnerable, has high care needs, no end date for the isolated living hell.

Is this about his age and health and wanting the coercive control and abuse.
Or is it about him getting the nursing home care he needs and you having a better life for yourself.
What are the health implications for yourself if he is home long term over years and years.

Are you financially dependent on him, can you downsize and be independent?

No need to give answers here, but these are things you need to address and do some frank, truthful and honest soul searching within yourself, maybe times you wanted to leave and kicked yourself for not doing so, if so, this is an opportunity.

It’s none of my business and your own private affairs but, to play devils advocate:-
The seemingly right thing to do as a dutiful and honourable wife in having him back home is the absolutely wrong and detrimental thing for your health and wellbeing.
The societal wrong thing to do of ‘abandoning’ him in a home is the right thing to do for your own health and wellbeing. It is nobody else’s business, as far as they are concerned, if he needs a nursing home then he needs a nursing home end of.

You have a situation and the outcome is up to you.

4

Welcome to the forum alfreda.
No one judges on this forum. You are welcome to vent and be as honest as you need to be. We all joined in times of crisis.
You say you are healthy which is good. However you have had one stress related heart attack. In my very humble opinion I feel you could be in danger of another one if you allow your husband home. His needs are high by the details on your post. Forgive me for saying this, but is his crying partly to coerce you into having him home. Hope I am wrong. I know you love him, but that doesn’t mean you have to be afraid of verbal outbursts. A care home may suit, and you can visit for as long or little as you want. I loved my husband very much but his needs became too much and his consultant wouldn’t allow him home for his safety.
Others will be along with practical advice but please don’t be bullied by the assessment team

5

Hi Alfreda, welcome to the forum.
This is a forum primarlly to support carers. Too often, especially in hospital, everyone is focussed entirely on the patient.
In the current situation, their rules actually insist that they get the patient back home to free up a bed asap., regardless of the impact on anyone else.
I could write a book on this subject!!

The best way of working out what to do, is to look not at what everyone wants, but at what your husband NEEDS.
Make a list (on the computer is easiest for shuffling) of everything that is wrong with him. Then write down what he needs as a result, REGARDLESS OF WHERE HE IS.
So if he is incontinent he needs not just new pads, but someone to wash him, and an endless supply of clean bedding, which in turn means someone doing his laundry, folding it, putting it back on the bed, someone to roll him over etc. etc.

If he is immobile, look up the NHS instructions on avoiding bed sores. Regular movement, so someone to do that too.

From what you have described, already, he needs a TEAM available, 24/7.
The only way he can get that is in residential care. I know it’s not what he wants, but what he needs.

Then ask the person in charge of the ward to arrange for an NHS Continuing Healthcare Assessment. You should be present at a meeting. Print off your list of his needs and take copies for everyone there.

PS I’m sure they will say that at most “he can have 2 carers 3/4 times a day”, but don’t be fooled by this.
Ask how long each visit will be. Most people seem to have half hour visits, so that’s just 2 hours a day.

Ask “who is going to care for him the other 22 hours?”

Remind everyone that is is YOUR choice to care or not to care.
No one can be forced to care, not even a wife for a husband.

Now have a look at the nursing homes in your area (CQC have a list). Then visit one a day and decide which one seems best. Talk to the Matron/Manager. If you can say at the meeting that you’ve already spoken to a named home, it may speed things up

If you feel they are bullying them, say so!

6

EVERYTHING BOWLING BUN SAID!

He really does need to be where there is a 24/7 team to care for his needs.
It will be turbulent, upsetting and unpleasant, but the alternative could be you in intensive care or worse or in a home yourself.
He will adjust and make friends in due course, albeit he might not let onto you if he wants to emotionally blackmail and punish you. There’s no crystal ball or knowing how he will be. Take it as it comes and leave it all behind in the home as you walk out of the door after visits.

7

Yes cannot agree with Breezy and BB more. Alfreda what would you do if a friend sent you an email with what you have just posted? What advice would you give her? It does not sound as if caring for your husband at home is sustainable or realistic. What about your mental and physical health? YOU count too. Please do not let your husband brainwash and manipulate you into having him home. Do you have a local Carers group? Often they do have staff who will listen to you if you can phone and hopefully guide you through the next stage.

8

EXACTLY WHAT HELENA SAID.
What would you say to a friend or sister in your position.

Be your own best friend and be kind to yourself.

Alfreda I hope you are feeling the support and will be following up some of the great leads.

There are many couples split apart by one needing to be in a home at any stage in life for various reasons. It is life. Easy for me to say when I am not emotional invested and that is the key, detach yourself from the emotions and compassion and be pragmatic, go through Bowlingbuns replies, be practical.

9

He will be much more frail and suffering at home with only what care you are able to give when you are worn out.

Wherever he is he will be old, frail, ill and suffering, be it at home, in a residential home or in the Ritz.
It is about where his needs will be best met.

Have they done a home assessment - do you have a wetroom shower room for him with the shower wheelchair, does he have stairs to get to the bedroom and bathroom? Are you equipped? Does he have a hospital style bed at home?
UNSAFE DISCHARGE they do not like that.
You can refuse to have him home due to not being equipped and not having the support etc
Read Bowlingbuns replies again.
Get social services involved on needs assessment for yourself - they take into account things like your heart condition, stress, age etc and how it affects you being a 24/7 carer.

I am not qualified to say the outcome but I wouldn’t be surprised if it is a nursing home.
My mums GP said she qualifies to be in a nursing home if she wanted to or I needed her to and she has both her legs and is not as ill as your husband.

However the current thinking is they are better off at their own home, so if you don’t want that then you need to be armed and ready to resist it.

10

Thank you all for your replies. I am taking your advice fully on board. I already know they have pre-primed him to come home, so I’ll have to be assertive. I’ll ask to speak to them privately. It’s the old story, no-one knows what goes on behind closed doors. I shall re-read everything here, take notes and do my best to be prepared. This afternoon, I’ll also talk with hubby about his needs, versus what I am able to provide for our joint wellbeing.

On the financial front, we won’t qualify for help as we have some joint savings. I understand that. However, I also have some independent savings in my own name in a different bank, I called it my escape fund. Can they touch that?

11

To the best of my knowledge they cannot touch your savings. With joint savings, I think they can only assess his half of the fund but hopefully others will be able to clarify.

12

Your own savings reason says it all…

Don’t be coerced, bullied or trapped by them wanting the bed emptying and not wanting the effort and bother of getting a residential placement.

Not easy for him, his conditions, age, frailty and fears, not nice at all and then to be told to go into residential and not return home will be awful regardless of anything beforehand. But if it is what is needed for his care then that is where he is at and where he needs to be. I can’t begin to imagine how that would feel, and then you will have to bear the brunt of it while he adjusts and deals with his issues about the situation, but that’s what they are, his issues. Upsetting to see and to receive the anger but you are visiting and can remove yourself from the situation to powder your nose or go home.

They will be adamant on him coming home, the best in their opinion is for the patient to return home.
But best for who? Not the patient if you can’t supply the care required or if the effort puts you in hospital! Could be trying it on, could be shortage of residential home spaces. Not best for you because it is too much for you.

I’ve noticed of late that the physio/occ therapist phones to say discharge and basically every time I find they have been somewhat creative about her physical ability, one of which occasions they were reported for an unsafe discharge by me and by the homesafe team.

Good luck tomorrow.

13

If your savings are in your name, they can’t touch them. You don’t even have to say how much you have, although it’s advisable to let them know that you have savings in your sole name. That way you’re not hiding anything.

14

This is exactly the reason you need to INSIST on a proper NHS Continuing Healthcare Assessment.
If he qualifies, everything related to his care is absolutely FREE!

Refuse to enter into ANY discussions about money, who owns the house etc.etc.
They MUST do a CHC assessment first.
Put your suit of armour on, even if you are quivering inside, and be very firm, stern, and keep repeating
HE NEEDS A CHC ASSESSMENT FIRST.

Discharging first, to assess, is not required as they already know this has failed, not just once, but twice!!!
It’s time for them to draw up a long term, sustainable plan.

15

Please let us know how you get on tomorrow. I do feel for you . But I do agree, that your life will become unbearable if you have him back and it really does sound as if he needs 24/7 care. BB’s advice is good re the CHC assessment.

16

Tips to survive this sort of meeting.
Dress formally.
Arrive early in case the traffic and/or parking is difficult.
Find the canteen, have a tea, and then a wee. Nothing worse than one without the other!!
The arrive at wherever you are supposed to be 10-15 minutes, in case there is what I call a “meeting before a meeting” i.e. when they agree their story beforehand.
If they start using jargon, STOP them. Tell them it’s OK amongst themselves but inappropriate with a non medical relative. Every time they do this, stop them again.
If they start talking about medical issues you don’t understand, make them explain.
If they talk so fast you can’t take it in, or make notes (always take a pen and pad) tell them to slow down as you want to record everything.
Take the names and rank of everyone present.

When it’s all over, go back to the canteen for a tea and wee, before you go home. These meetings are incredibly emotionally draining.

17

Hope you’ve seen subsequent replies.
Good luck.

18

Well… the meeting was scheduled to happen on the ward. No one turned up. I waited an hour and a half, then I spoke to the ward clerk, who called the consultant, who said “Um…” She went to find out and never returned. Sigh. Keep calm and carry on. Left hand, right hand and parties in breweries spring to mind. I’ll update further as and when. Thank you so much for your ongoing support. xxx

19

Alfreda, my jaw literally dropped when I read your post.
Completely and utterly disgraceful, and of course shows total lack of respect for your time, in fact, utter contempt.

Calm down and recover tonight, and then ring the CEO’s office at the hospital.
Say that you want to make an urgent formal complaint.
I had to do this several times in relation to my own mum’s care. I spoke to the PA and had an instant improvement.
Work out some “bullet points”. The three/four/five things you want most. Keep them as short as possible, but say you can elaborate if required.

Keep us posted.

20

That is so frustrating.

If nothing else, you have more time to prepare for the meeting and get more informed.