Respite and anger

I was in a pretty pressurised job but 9 to 5 , 5 days a week. Having been retired for 17 years , becoming a 24/7 carer has come as a right shock to the system and I certainly need advice from the far more experienced carers on this forum ( I have now been lurching for 5 months ). Just three questions for the moment :

  1. Is it pretty common for the caree ( my shorthand for the cared-for) to demand " no strangers in my house" or " I refuse to be nannied " when the subject of outside support is raised ? Whilst I have had rest periods ( caree napping , for example ) this attitude has meant no respite , as defined by CarersUK, since the start.
  2. I have been told and read that anger is extremely prevalent among the caring community. Mine has risen to heights that scare me and I feel I must seek counselling , but it all seems horribly bad that it should emerge so soon after the start . Are there any among you who can state that this state of affairs only surfaced after , say , a year?
  3. The caree keeps referring to my “job” as if she were an employer. Again , is this widespread ?

Any comment/advice would be most gracefully received .

Hi Joes,

I’ll answer the three questions below:

  1. Absolutely, yes. I think most people on this forum can say that their caree (especially if the caree is not a child of the carer) initially refuses to have ‘outside help’ coming in to the house. It’s like a stage of denial that the caree seems to go through. They do not seem to realise how tiring it is to be ‘on-call’ as a carer 24/7 (don’t take this too personally- they genuinely don’t know how tiring and stressful it is if they haven’t been in the same situation themselves). Depending on how you feel about this, you can point-blank refuse to provide care altogether. Has a needs assessment been carried out at all? If not, try and get this done- this tends to get the ball rolling with professional care being put in place.
  2. Personally, anger arose for me after about 3 months, so you’ve done well to last a year before reaching that point! Anger/resentment= all parts of being a carer when you are struggling to cope with the sheer amount of caring you have to do. It’s good you’ve identified your anger, though- I’d highly recommend counselling (if only for some small amount of time that’s ‘all about you’ for a change).
  3. Yes, definitely widespread in the care-world! Also, the phrase ‘my ‘x’ does this/that/the other for me’ reigns supreme whenever outside help is offered to the caree.

I think, if you can bring yourself to tell us a bit more about your situation, there’s so many of us here with similar backgrounds to yourself that we can help you to find the best-suited solution so both you and your caree get the support you both need.

Hi Joes and welcome,
I don’t think there’s any set or ‘normal’ time period before a carer gets to the end of their strength, patience or capability. Each ‘case’ is individual and depends very much on personalities, relationships and the amount of support they are getting.
Many carers are devastated by the eventual loss of their much loved caree and at the other end of the spectrum some didn’t like or get on with their caree before they started caring and feel trapped and angry from the start.
One thing’s for sure. Looking after a family member is not a ‘job’ because no-one has to care for another adult no matter what the relationship. It’s purely a volunteer position.
There are all sorts of reasons why people take on this task. A sense of duty or guilt, financial (can’t afford to live elsewhere), or just love for the person needing care, as a few examples.
Many older people refuse outside care. I looked after my elderly mother and I was lucky in that although reluctant at first she did allow carers to help out and became very fond of her regular ‘girls’. However it isn’t really their choice, which is hard for them to come to terms with. Needs must.
If you’d feel able to give a few more details, such as who your caree is (relationship), what is wrong with her, (old age, physical disability etc) there’s a load of information on here to look up and many members will be glad to offer their advice. There will be a lot of questions too. All designed to help us help you, not because we are nosey!
Many members advocate counselling as they have found it really helps them manage demands from their caree and realise that they are entitled to a life of their own too. Do go ahead with that. There will be more answers to your post to come from other members and hopefully we can point you to all the help you need.

Hello Joe’s and welcome to the forum
I too was in a similar situation. My lovely now late husband was diagnosed with vascular dementia after suffering strokes. Several mini and then a large stroke. He developed other health issues. Fortunately not cancer, but very serious bowel problems, and issues with potassium levels. He was in a nursing home for the last 3¾ years, and previously 6months in hospital and assessment unit. I loved him dearly. However, to cope, and to keep my own mental health in order, I eventually cut down on visits. If I hadn’t, I would have been in no fit state to visit at all! Every other day became the normal for me, certainly not twice a day. I did learn that he was cared for, and eventually could meet a friend without the guilt monster kicking me! Took a while.
It’s not a job,being a carer, that’s what staff are paid for. I too had angry moments, resented that our retirement together was cruelly taken away. Please just try, gradually, starting with one visit instead of two a day, do something for yourself, even if it’s a newspaper in a cafe or feet up at home. It really is a need for you.

Hi Joes, welcome to the forum, glad you managed to post.
The answers to your questions are as follows:-

Yes and

However, it is NOT up to the carer to choose whether or not you care, it is YOUR choice. I know it’s really daft, but that’s how the rules work.
The caree needs help. Their choice is either have outside carers at home, or in residential care.
BUT they don’t like that idea, because they cannot admit to themselves how much help they need.
As a result, they try to blackmail, coerce, cajole, any relative they can find to avoid this.
Fear is also an element.

What is your relationship to the caree?
Age of the Caree?
Nature of disability?
Home owner?
Over £23,000 in savings.
Do you live with the caree?
Have another home?

To all of you who took both time and trouble to respond - heartfelt thanks. I have really been helped in the sense that the mantra ".you are not alone " is not just words and my guilt feelings have been lessened . But apologies are also due : of course I should have appreciated that to give good practical advice one should " know " who request it .
For those who seemingly would wish to make further remarks : I am 82 / my wife ( caree ) is 84/ I am in reasonable health / she had a leg op 5 months ago / rehab made difficult by existing back and neck arthritis and Parkinson’s diagnosed three years ago / long married and live together in house legally owned 100% by her/ she has small family all non- local / I have but severed connection on marriage/ much to wife’ s credit savings were made before retirement and these are dissipating ! / currently not seeking financial support but I have had a Health and Well- being Assessment and am a Registered Carer.
Please note that pre - op only a comparitively small amount of care was needed and respite could be had. It is very different now : the caree professes not to fully understand the words " caring " , " carer " and " respite " . The latter is " nothing to do with me "and " isn’t a caree entitled to be getting out " ( a car trip , yes , but lack of mobility a gigantic problem ).
Sorry , all of you, for the delay in posting this but can I be cheeky and ask a question you have triggered ? In most of the tasks and procedures in daily living , is it the carer or caree that calls the shots ? I am evidently not calling some shots properly — have been told I am sacked and to " get out of my house " !!! Who would be a carer eh ?

I know this may seem like an extra piece of information which you don’t want, but there is a link between Parkinsons and Lewy Bodies dementia. It could well be, especially at your wife’s advanced age, that she simply can’t see her situation as clearly as you do. It is a common trait of all the “very elderly” i.e. over 85, that they simply don’t see how much others are running around after them (I certainly saw this with my own mum before she died at 87). She will never willingly have outside carers or residential care.
Once yo accept this, then only you can decide if and when you are going to care, and what to do when you make yourself unavailable. Your role becomes more that of parent to an “elderly toddler”. Not a phrase I like, but it’s the easiest way of explaining it.
Think about having a “cleaner” to “help you” only someone from a care agency. Once she has been a few times, you can “pop out” for increasing lengths of time.
Always remember that no one can force you to care.
Also, as you are over 60, if you are still living in the house, the council cannot consider the value of the house when assessing her ability to pay for care. I hope that puts your mind at rest.

Hi Joes,

In my case, it’s definitely the Caree that calls the shots. Even now she is in a nursing home, she still demands that I visit every day after work and stay, doing different jobs for her, including after her ‘final’ call to the carers for the evening (i.e. toileting and getting changed for bed) because apparently I’m the only person my Caree will trust/order to arrange her pillows correctly.

I think a lot of Carees (adults) use emotional manipulation to ‘get their way’. Of course, it works splendidly because they know that we love them and they know that, in the past, they have done things for us. They play on it to guilt-trip us into doing their bidding.

Don’t get me wrong, I really do think that they are scared and crying out for us to help them- it’s heartbreaking to be a part of all of this. However, I think any thoughts of our well-being don’t even enter their heads (they’re too busy worrying about themselves and their condition/illness). It’s understandable, but not sustainable.

If anyone has any magic answers of how to say ‘no’ or to ‘pull rank’ to the people we care for and love, without feeling immense guilt, I am certainly all-ears!

Hi Broostine.
Oh boy, are you ringing bells ! A consequence of my Carer Health and Well- Being Assessment is that the social care worker involved has arranged for me to have vouchers to pay for 6 sessions with a local Counsellor - a list of them provided. I have had my first session with a lady who turns out to be a psychotherapist and , having heard me out ( almost mirror image of your story ) , she was straight on to what she had sussed as my guilt feeling. This, she has promised , will be well focussed on in succeeding sessions !
You should be entitled to an Assessment like I had – have you thought of requesting it ? Perhaps you will be granted these vouchers but , if not, could you manage the cost of even just two sessions ?
Like me, it is a pound to a penny you are suffering from stress and a recognised by the NHS Counsellor has a fair chance of alleviating this for us both as well as helping with guilt.
May the force be with you Broostine – it is a very tough call .