Hi
Thank you for reading my story I will try to keep it as short as possible.
My husband and I lived in Spain for 20 years and had a successful business and fulfilling enjoyable life. We had a large farm with animals including dogs and horses with room for MIL to live independently. This all changed in 2020 when husband had a knee replacement which subsequently became infected and he was very ill with sepsis. He has never recovered or been able to walk unaided or work. We had to give everything up and returned to the UK permanently over a year ago. I had my own successful accountancy business which paid for everything and has supported us for many years.
In June last year my husband began having surgery to treat the infection and its complications here in UK and his health has deteriorated. He has been in and out of hospital with infections and has become so weak he is now bed bound. He is currently in hospital but ready for discharge. He will have carers 4 times per day and has a hoist for moving him. He will live in a room downstairs with a commode and no access to a bathroom. Before the last hospitalisation he was doubly incontinent due to the inability to get to the commode in time. I was caring for him, working and exhausted. MIL has been in hospital since November 2024 and is now also ready to be discharged with a similar care package 4 times per day. I am terrified to have both of them home and have to care for them and also try to work. I have an office in our conservatory and will be constantly interrupted and distracted. I am scared for our financial status, being trapped in a care situation and unable to have a life of my own ( sorry if that sounds selfish). I think I am also āgrievingā our old life and find it hard to accept we might have to live on benefits if I cannot work due to caring responsibilities.
I know my troubles are trivial compared to many on here but to me they are huge and overwhelming.
Sorry for the long post
@Norfolk1963ā¦welcome to the forum. Your troubles are not trivial, youāre going through an awful lot and have had to give up a lot. Carers 4 times a day is hard re one person let alone 2. Have you had a carers assessment done? My husband had several years of various health problems, long story but we had carers in doubled up 4 times a day and he was weeing in bottles and using nappies. Heād previously spent 7 months in hospital and then a physio centre trying to mobilise again. He came home and refused to work with the physio team, so much so that they withdrew their help within the first week. It was very hard for me. He is now in a carehome as we couldnāt cope. I also work full time and my elderly parents live with me. This forum was a godsend, Iām sure it will help you a lot to have somewhere you can come to chat to others. Sending lots of hugs 
your way.
Thank you @Sue24 he himself doesnāt want to come home as he knows it is too much for me to cope with but we have no other choice it seems. I feel Iām being forced to care when itās really not practical for any of us.
@Norfolk1963 you have the legal right to refuse to care. You can say āno - this is not taking my needs into account at all and it is not going to happen.ā You have rights.
@Norfolk1963 Welcome from me too. What SS do not seem to realise that even with Carers 4x a day that leaves at least 20 hours when YOU have to step in. How on earth can you be expected to do it for 2 people and work?
I have to agree with Charles. You legally have the right to say āNOā. It honestly sounds as if caring for ONE would break most yet alone being expected to care for 2. Can you contact the Carers Helpline to work out a way forward? Do you have a local āSupport for Carersā who might have ideas of the way forward. Finally your GP? Is it worth seeing them and telling them that you would NOT be able to cope.
You must REFUSE to have them home. I would write to the CEO of the hospital, sent recorded delivery, and head the letter UNSAFE DISCHARGE. The main Carers Uk website will have details about discharge procedures, what they should involve etc.
Also look at NHS Continuing Healthcare.
How old are all concerned?
Hello everyone
Thank you so much for your help. I have only just been able to post a reply so apologies for the delay, some sort of problem with my membership status. I have told them I Refuse to have MIL home and they have accepted this. My husband has took a turn for the worse and is not in a condition to be discharged yet.
Your advice really helped me stand up to this so thank you all
Happy to help.
Sorry to hear your husband has had a setback.
@Norfolk1963ā¦.Iām glad that theyāve listened to you re MIL, but sorry your husband has taken a turn for the worse.
@Norfolk1963 Glad that your concerns were noted but truly sorry that your husband has taken a turn for the worse.
So sad that we Carers get bullied by SS and the NHS. Not that long ago I thought both organisations were on my side. Not anymore. Try and take care of yourself as you are having a mega stressful time. Please let us know how you are doing when you can.
Hi everyone, me again
Iāve visited husband in hospital today and he has some complex issues going on, major fluid retention and severe immobility and mental health problems and a continuing infection somewhere but they donāt know where. I donāt think he will be discharged anytime soon. After I left I came home and worked and then checked in with him again. They had tried to weigh him using a hoist which was agony for him and then he didnāt get the pain relief required and was left shouting and crying with pain. Itās so upsetting to hear this from him and I donāt know what to do. Can I complain about his care? Iāve tried PALS at the hospital but they donāt answer their phone or emails. Iām also scared of raising complaints whilst he is still in hospital in case the care deteriorates even more.
Everyone was so helpful with my initial post so hoping someone can guide me again, thank you
@Norfolk1963ā¦.sorry to hear your husband is in pain, that must be distressing to hear. It may be an idea to talk to the ward sister re your concerns. When my husband was in hospital the chaplaincy service were also a big help, weāre not religious but they are a good go between. Even if they just call and sit with your husband from time to time, he may find them a help.
Why weigh him in a hoist?? Sounds barbaric to me.
When I worked in a hospital, 50 years ago, one of the junior nurses was trying to weigh an un cooperative toddler. I suggested they weigh the nurse, then nurse plus toddler, subtracted one from the other to get the weight of the child. I canāt believe that there isnāt a better solution than hoisting for a patient in severe pain.
@bowlingbun I know. I couldnāt believe it either. His hip is severely damaged and without adequate pain relief any movement is agony. Iām at a loss to be honest
@Sue24 thank you for your help I have spoken to people on the desk on the ward but will try to go higher
@Norfolk1963
@Chris_22081 had to complain about the care his husband received/ didnāt receive whilst in hospital. Hopefully when he is less tired he can share what helped.
Hi @Norfolk1963 So sorry to read about your situation and also sorry that I havenāt been able to respond sooner.
@Melly1 is right - when my husband, Graham, was last admitted to hospital (by ambulance) in October, he was treated abysmally. Quick version - admitted with serious respiratory infection and put in the FIFTH bed of a 4-bed ward. This had no oxygen supply so a line was rung ACROSS the neighbouring bed - he could reach out and touch the beds on each side of him he was so close. The wall above his bed had plaster falling off, creating dust! Bearing in mind this is a RESPIRATORY ward I stared to complain. I was not listened to by the Ward Manager/Senior Nurse so I hit the roof and emailed the CEO direct. After four days I had a call from the Deputy Chief Nurse who was incandescent with rage as my email had only just been passed to her and she took personal responsibility for everything immediately. By this time Graham had spent five days totally delirious and had been moved to a single room as he had lost control of bladder and bowels - I arrived one day to find curtains in the 4-bed closed as they tried to clean him up. I grabbed gloves and ādived inā which shocked the staff but it gave him the reassurance he needed. I then spent about 10 hours every day by his bedside, feeding, cleaning, washing him and briefing all the medics on his medical history as they did not seem to read his Notes.
One night he was abused by an HCA who accused him of deliberately wetting the bed and she left him in a cold wet bed three times. I got in next morning and he was so distressed it made me cry. The DCN came by and he told her what had happened and I said I would be staying 24 hrs a day, even if it killed me, unless something was done. She pulled rank on everyone and things changed.
I suggest you IMMEDIATLEY email the CEO to lodge a complaint about the way your husband has been treated. If you have notes of dates and times, try to include them - or say you have that detail available. It is disgusting that a patient should be treated like this and caused more pain and suffering.
As you have found - so did I - PALS are USELESS and are used to fob off people. I was even told that they are not there to act on peopleās behalf just to log complaints! WHAT??? Check your own website which says a lot more than that!
You can tell I am still fuming over this situation. Unfortunately it takes getting CEO involved to get action. The Ward Manager/Senior Nurse on the ward Graham was on was totally dismissive of me and eventually said āoh a complaint to On High - well thatāll just come to me so MORE work for me to deal withā When I mentioned that comment to eh Chief Nurse she was NOT amused and I believe further comment was made.
As G was approaching discharge I managed to secure a 2 night break through Carefreespace.org and suspectng the might try to pressure G to agree to Discharge without involving me I handed in a letter stating that I would be away and that I would not accept any arrangement made by them with Graham in my absence. On the first full day I was away a physio phoned and tried to bully me into G being discharged next morning - when I would not be home to receive him. She had gone with two colleagues to his room just before this call and the three tried to bully him into agreement. Had I been there I would have hit the roof and it was interesting that the three avoided me once I was back in his room! The ward Manager simply denied it had happened.
The whole thing has taught me a lesson. If he has to be hospitalised in future, I will be SEEN to be making notes and if one person puts pressure on him I will āgo for the Jugularā. NO-ONE should be abused in hospital when they are at their most vulnerable and if people do not complain then no change will happen and people will get away with things.
I will not now go calm down a bit!!
Seriously, don;t allow anyone to bully YOU into caring or taking on more than you can cope with.
We had a carer due to visit twice a day when G was discharged - the first morning she arrived at 12.10 to get him up and dressed. I had already got him up and dressed and breakfasted as he is diabetic and could not wait for food and his medication! She then refused to wash him and said āI am here to encourage not do it for himā. She put on a new continence pad - incorrectly - and I had to wash him again and change it after she left because sheād put it on incorrectly and he soiled himself. When I complained I was told āwell it might be different tomorrowā. G was in tears and asked me not to subject him to that humiliation again. When I told the office I was harangued by a Supervisor for wasting their time. Letās just say that the words āabuseā and āincompetenceā and āfailure of duty of careā were thrown back at her. I now do all the caring 24/7 which is wearing me down. I do not have any other responsibility other than walking our dog - so I have ātimeā to do the level of caring he needs, but itās bl**dy exhausting and I could not work while doing this. (I closed our business and gave up work when G had a stroke 3 years ago). I will not let him down because I love him too much, but it is REALLY difficult at times.
Iāve rabbited on so forgive me. If thereās any particular things you want comments on, please do ask and I will try to help.
Best wishes to you
C
I also had to complain to the CEO when mum was in hospital. Almost instant action when people realise their chances of promotion might be at risk.
If we stick up for our relatives it might make things better for those who donāt have anyone to speak up for them.
Thank you again @bowlingbun @Melly1 @Chris_22081 your help has been fantastic. I emailed the CEO last night so we will see what happens, I am going to see him again soon.
Last night he messaged me to say he had been taken for a CT scan, they deflated his air mattress to move him and he was in agony. Got to the CT scan and they couldnāt do it because he didnāt have a cannula in his arm. They then moved him to a new ward still in agony on a deflated bed at 20.00 knowing there are shift changes at 20.00 and therefore no-one to accept him on to the ward, inflate the bed, give him pain relief etc.
I really hope the CEO steps in as this cannot go on, he is suicidal
That is terrible. Surely for a delicate patient they should PLAN any move?
Starting with extra pain relief before the move starts?
Checking he is prepared for the scan before the move starts?
A plan in advance for the new ward so immediately on arrival they can settle him in?
Was the trolley properly equipped for his needs, ie not solid, but cushioned in some way?
Transferring any vulnerable patient during changeover needs reviewing!