Worried I won’t last the course

I think by not visiting as much, you are giving them what they want, they can let care standards slip if family members are not visiting as much. I saw this with my own mother when she was in a home with dementia. My brother found her in the dining room with her hand in her dinner and her head on the table asleep. I saw one lady walking around for a long time with a dirty nappy, (i know because I could smell it) they were not happy about us visiting daily.

I really regret not being firmer about some things that happened, wish i could go back and do it differently. You can be nice without allowing them to patronise you.

I think it’s just isolating and people do expect you to put on a brave face and say the right things and I think that’s how the carers groups come in. Ours is mixed age and we are all quite different but we can discuss stuff with one another that we wouldn’t necessarily discuss outside of that group and no one judges x

Thank you again everyone for all your kind words and practical suggestions
I am going through a difficult time and do appreciate your help
I need to look for a carers group that might be helpful too
I don’t feel sorry for myself because I know some people are in even worse situations
It’s just tough isn’t it
And I have to try and get through it
A million thanks again ❤️❤️

I am going to suggest 2 things:
1. Start looking for another care home (it sounds as if your DH is self-funding). Don't get too drawn in to discussing his current situation - just say you are looking. Take kwest's advice - if not a Carers' Federation, there may be something similar. Don't rush - it sounds as if your DH is safe. You will get a good idea of what other places are like, how reasonable the current situation is, and so on.
2. Take good care of yourself. Schedule 'time out' to do things that restore you and help to keep you healthy Accept that this is very distressing, and wotk out your best way of coping with it - everyone is different.

Please do not take the carer's attitude to heart. It is sometimes the way that staff cope with the pressures they are under. It is not ideal, but sadly, in the current crisis, it happens. If your DH is properly cared for, try to let it slide off you.
Good luck

Do you have a Carer's Federation in your area. They are wonderful and would be able to give you good advice. They also offer counselling so that you can offload your anxieties without any judgement involved. They can also signpost you to whatever help might be available for you.

Try to let the Staff do their job. If they aren’t doing it please bring it to the attention of Management. It’s heartbreaking enough so the out being ‘told off’…
Reading all the posts, you have done so much ‘good’ writing about your own situation because I, and others can relate to it. I always feel reading the comments that we are all benefitting from writing down our own problems and experiences - it’s therapeutic for everyone.
Sometimes there aren’t any answers, but each reader, or writer receives their own ‘therapy’.
I hope it gets easier for you and Thank you
Grandsnet ❤️

Write to the CQC. We did this and the result was amazing. Gone were the staff who didn't do their jobs properly and the residents & visitors were finally treated with respect. It won't happen overnight.

Thank you for all your advice
There is a lot for me to take on and think about
I am wary of complaining to the management as they were quite hostile to me back in December ( because they didn’t like me saying that I wanted my husband taken out of bed everyday ) and because I am worried that they will evict him because they find me difficult
In fact , I am expecting a nasty phone call from the manageress any time now as she was away on holiday when this latest episode with the same nurse happened and now that she is back from holiday , she will want to at least give me another telling off or say that she wants to evict him
So I am going to practise what dizzyribs has advised to say and hopefully she won’t reduce me to tears

I am surprised you put up with being spoken to as if you were a naughty child!

In your place, I would lodge a politely worded complaint to whoever is superior to this nurse or carer.

If your husband still knows you, and misses you when you don't turn up, staying away isn't really an option, is it?

You certainly should not let the atmosphere ruin your health, so you will probably have to accept the way most things are done in the home.

Don’t let yourself slip into a depression. You have so much change to adjust to. It is hard to hand over the care of your life partner to others. It would help you to talk through this transition with someone who is not involved and won’t bombard you with advice. Perhaps your doctor could refer you to a therapist so that you can have some unemotional support for a while. Befriend the nursing home staff, it is the best thing you can do for your DH. It is a lonely business, my mum was in a home for a few years and didn’t know me quite soon after she went in. The staff were friends though and this helped so much. It must be harder when it’s your husband. Wishing you well. X

As has been said, you need to speak to the management about how you are being treated. It's not acceptable for them to treat you as a naughty child. Think about what you want, (to be treated respectfully as an adult as is your right) and how to ask for that in a strong, respectful way before you ask for a meeting.
(eg, I've asked for this meeting because I am unhappy at the way your staff are treating me. When I try to help my husband they shout at me / belittle me / insert your concern. I'm sure it's because they are very busy or maybe they are worried about my safety, however; I need them to treat me as an adult and explain their concern / tell me what I can do and how to do it safely. That way we can work together for his benefit and I can be supportive. At the moment is feels as if we are on opposing sides which is obviously not good for anyone. ....

You do need to have a bit of confidence in yourself. Keep reminding yourself you are an adult and deserve to be treated as one. This whole situation has, understandably, made you feel powerless and fragile and small. It's easy to be bullied when you are feeling that way. Their behaviour is not acceptable in any instance.

As for the nurses belittling you: This process is very hard- especially the first time you do it, so maybe practice a bit on your own... when the nurse "tells you off" like a child, you take a breath, try to be calm and imagine yourself growing an inch or two. Then you calmly look her in the eye and say some or all of this: (to yourself as much as to her!)
"I am an adult, I am rational and can follow logic. If you want my respect, you need to treat me as an adult and explain how I can help. Being negative doesn't help either of us." (don't wither, don't blame and don't apologise)
The nurse will probably get huffy but it will make her think twice before she treats you as a child again. You may have to repeat this each time it happens, but it will work eventually and is more empowering than allowing yourself to feel small and going home to cry. (I do know how awful this situation is, I've been there and cried my own river too often)
If she is cooperative and respectful, then you can calmly ask "what would you prefer me to do when my husband needs xxx (insert help required) and you are too busy to help straight away?"

To the OP, I know how you feel. My mum was self-funding but the choice of carehomes was limited. A couple were far too expensive, this was a happy medium. She hated it for about a month then made a friend and settled. Not all staff were pleasant, but most were. Remember they are not well-paid, no career path, and many see the job as temporary. They are often under-staffed with "agency workers" filling in. I often saw mum in strange clothes - they go missing in the laundry. She didn't bother, so I didn't.

As others have said, the care will not be as you would have given it. Mum didn't like to stay in her room (she was mobile) but didn't watch the tv in the lounge cos it wasn't her type of programme. She stopped reading too, and having been a music lover all her life she hated any concerts that were put on, even singing Christmas Carols. Basically, her personality changed. It seems odd but I found her to be a nicer person in there than she used to be and certainly more interesting.

I stopped killing myself to go every day when one week I had to miss a few days and on my return she asked me if I'd found the toilet okay!!!

As others have said, you must not attempt to give physical help to your husband. Carers are trained in how to do it without injury to themselves or the patient, and are insured if anything goes wrong.

I am not sure about whether care homes with the majority (or all) of the residents are local authority funded as my mum's was both. She was fee-paying but 90% were not and it was fine once we got used to the routine. I got reasonably friendly with the manageress and was surprised to learn that some carers whom I liked had faults that I wasn't aware of and others who appeared a bit slapdash were well liked and even taking extra qualifications.

I also got a surprise when one day I had to take mum 20 miles away for a hearing test and on our return she started to panic because she imagined the home might have "sold" her room. On arrival the manageress opened the door and mum flung herself into her arms and cried "Can I come back? I hope you've not given my room to someone else".

In short, we only use care homes nowadays when there is really no choice, and sadly they are not as we would want compared to our own homes or our own way of doing things. We have to press the government for better funding because it is going to get worse with more of us living longer but with health issues, whether physical or mental.

We can only do our best in what is a less than ideal situation.

Hopefully someone will advise Chris36 on where to post the above message but I don't know how to do it.

Hi hope you lovely ladies can help my daughter came to live with me when her marriage broke down her ex is a narcissist and has mernipulated the two grandkids to go and live with him they were doing one week his one week daughter my daughter is absolutely heart broken thing is I don't know how to react to my grand daughter she text me good night I don't hear at all from my grandson I feel like they are cutting us out of there lives so should I do the same help

This must be so very difficult for you to cope with but please do not stop visiting your DH. You are probably all he has to look forward to and he may be lost worrying about where you are. As others have said far better to agree with the carers, be empathetic, acknowledge their frustrations and try to befriend them. If you have them on side then it's likely your DH will receive the best care. Look after yourself.

I agree with Janejudge, I was lucky enough to join a local group several years ago. It helps a lot to see how others manage. In our group, one member, like the OP is younger and still feels she needs to ‘live’, her husband is in a care home and she has just had a 3 week holiday abroad, another member whose husband is still at home never leaves his side and won't even get a carer for a couple of hours off. Both are supported by the group, there is no right way to cope with this beastly situation.

A few years back when I was a market researcher (PT job while at uni) we had one regular survey for the over 50s demographic. One of the questions was:-

What is your greatest fear?

Apart from the obvious responses of "bereavement "and "poor health" number 3 on the list was "Losing my independence".

Losing my independence would be number one on my list and some of the postings upthread are a perfect illustration of why.

It is really hard seeing a loved one in a care setting

I think you need to send an email regarding how they talk to you.

I would suggest joining a carers group (carers uk have a list) so you can meet with people in similar situations as it’s very isolating

I find that some of the staff speak to me like I am a child or one of the residents. I am only 71 so not in my dotage yet luckily. I make allowances for the staff in that a lot of the residents including my husband can be very child like and talking to them like that is sometimes necessary and it must be very difficult for the staff not to talk to everyone the same. It’s a bit like the school teacher wh treats everyone like a pupil. I have also been told they cannot allow me to help move him because it would complicate matters with their insurance if anything went wrong and someone got hurt.

Maybe a break would help, you dont say how often you go in but you could miss a visit. Although it is sad that people lose a sense of time with dementia it does mean he will not notice you missed a visit.

welshchrissy

I’ve every sympathy with you and understand how you feel. We are in a very similar situation my husband also has no mobility, is double incontinent and has mild dementia. The care home he is in is not perfect but they are kind. He complains but he also complained about my care and the carers that came in the last year he was at home. He cannot accept that he is not a priority over everyone else like he was at home. They have others to care for also with complex needs and cannot always get to him the minute he presses his buzzer sometimes he just has to wait. I feel guilty but know that I could not care for him at home any more . It would not be safe for either of us. We just have to compromise but sometimes life is very lonely. I feel that I am married but no longer have a marriage.

Notjustaprettyface

Thanks for your advice
To clarify things a bit : I am only 66 yrs old, we have an age gap with my husband
i think i resent going to the nursing home because i dont feel old yet and life has robbed me of my husband
i am nice to the carers , most of whom are very nice but i dont get on with the nurses or the management team
I want to see my husband but it’s difficult in that environment as the residents there just look as if they are waiting to die
We all know we are going to die but to be reminded of it every day is hard to bear

Btw your feelings are very natural, one of my cousins is in a similar position, she’s 66 and her husband only 73, but he’s got a rare form of dementia caused by a bleed on the brain and earlier this year she took the heartbreaking decision to place him in residential care.

She’s terribly lonely, visits regularly, takes his out and has tremendous family support, but her life is ruined, she misses her husband terribly, this man in the home looks like him, speaks like him, but is most definitely not the man she married forty years ago.

It’s so sad.

You have all of my empathy. My husband has been “told off” several times for taking his Mum to the loo in her care home.

The carers feel that this is their role, however I think part of this might be because if she fell who would take the responsibility. It’s so tough.

Thanks for your advice
To clarify things a bit : I am only 66 yrs old, we have an age gap with my husband
i think i resent going to the nursing home because i dont feel old yet and life has robbed me of my husband
i am nice to the carers , most of whom are very nice but i dont get on with the nurses or the management team
I want to see my husband but it’s difficult in that environment as the residents there just look as if they are waiting to die
We all know we are going to die but to be reminded of it every day is hard to bear

I’ve every sympathy with you and understand how you feel. We are in a very similar situation my husband also has no mobility, is double incontinent and has mild dementia. The care home he is in is not perfect but they are kind. He complains but he also complained about my care and the carers that came in the last year he was at home. He cannot accept that he is not a priority over everyone else like he was at home. They have others to care for also with complex needs and cannot always get to him the minute he presses his buzzer sometimes he just has to wait. I feel guilty but know that I could not care for him at home any more . It would not be safe for either of us. We just have to compromise but sometimes life is very lonely. I feel that I am married but no longer have a marriage.