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How to control resentment - Carers UK Forum

How to control resentment

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Hello Members,

I am new to the website, and only found it after goggling how to cope with resentment.
You see I am a 24/7 carer for my husband, who at the age of 69 is parallelised from the waist down and becoming more paralysed down the arms and hands.
He has taken over 15 years to reach this stage and it has been a slow creeping drive toward being totally dependent for his every need.
The Doctors know he is losing control over his motor and sensory nerves, but still do not know why, but I am sure its genetic as both his siblings (2 sisters) also had the same symptoms and also ended up in wheelchairs.
He does have NF2 but that does not cause Motor or sensory nerve damage, one doctor thought he had Kennedy's disease and despite having every single symptom, they say the DNA test says he does not have it. (How reliable are they?)
I did feel like saying so you know that it would take 17 million DVD's to hold all the information about your DNA, or 1 million books to write it all down, but that would get me a rebuke, as after all what do I know?
The point is, I have to met his every need, from getting out of bed, via hoists, into a chair to the bathroom, hoist to put him on the loo, enemas to make his slow bowel work, hoist to shower chair, then back to the bedroom to dress him.
Cook and set up a machine to feed him, then I am free to do every chore in the house and garden that needs doing. in between on call to his every wish or need.
Over the years it has got harder, I am getting older, and he has become more controlling.
I guess I have always gone alone with him in the 50 years we have been married, We have 2 sons, One will help with anything but lives 3/4 of an hour away, the other is up the road, and does nothing to help, and would not even think about it.

What is surprising is the resentment that builds up now and again and if I say anything to him, I always get the victim card shoved in my face, "do I think he wants to be like this", or I should understand he cannot help it, but whilst I have great compassion for him, I feel he just takes it all for granted that it is his right, he thinks nothing of calling me in the night to get up and move his foot, or wanting to read till hes ready to sleep, so I have to wait to put his CPap mask on, before I can go to bed, we had to work through these demands and although I still do them, we agreed on how long I have to wait.
I will follow me around now and tell me how to do things, how to cook or print off a recipe for me, now he is suddenly the expert Gardener, telling me to do this or that, when I have done it by myself for at least the last 20 years, he controls the money, questions what I have bought if I use his card. He is good at this, and up till the last year, I have not been too bothered, but resentment builds up now and again, I hate the feelings, I have explained to him that I am expected to drive him up to the hospitals in London, Guys and St Thomas, that have been monthly visits that end up taking the whole day, and then he may moan about not being taken out enough, but to be honest it no pleasure taking him anywhere because everywhere is a challenge, I drive a large vehicle to allow the electric chair access and I am totally responsible for his safety, so nothing is relaxing, its always work....
The biggest bit that makes me resentful is he never really see it from my point of view, I did try to put myself in his "shoes" and felt great sadness for him, and for a few days no resentment, but as soon as I get a stream of orders, I just start to build up inside, this is what I need to handle, we do not have carers come in, we simply cannot afford them in the Surrey area, we live in a small Bungalow, live off our pensions and my husband’s disability allowance, we have a small amount of savings, but as everything in the way of utilities go up every year, Council Tax is £2500 a year and that’s with an allowance of £320.00 off, we have a fine line to walk....
I was an holistic Practitioner 5 years ago, and earned a good income, that allowed the worries to stay in the background, I loved the job of helping people, but it had to end when his condition reached a stage of needing more care, someone on call 24/7 (he has choking bouts) so I had to give up my passion. Then I was independent, had my own life to live as well as share but now it feels as if I am here to serve him, be at his beck and call.
Now I wonder what it is all about, what is the purpose, and is it worth waking up in the morning....
Only someone who has walked in my shoes, can know what I am talking about and how I feel,
Anyone have any advice they can offer?
Hi Jenny and welcome to the forum. I think you need some advice from our resident Jenny who will no doubt advise you how to reclaim your life.
Things can not go on like that and you may not see it yourself but you are in a position (at last) to take control now whatever he may think.
Hi Jenny, welcome to the forum. Are you getting any help at all?
Is you husband receiving Disability Living Allowance or Attendance Allowance?
Has your husband had a recent Needs Assessment from Social Services?
Have you had a recent Carers Assessment from Social Services?
A full financial assessment from Social Services?
Has your husband ever had an "NHS Continuing Healthcare Checklist Assessment"? If not, first of all download the checklist from the internet, do your own score. If you think there's any chance he will qualify, ask your GP to arrange an URGENT assessment.
I know it's difficult when one of a couple is disabled, and the other not, but it's really important that you maintain some life of your own. It's also important that he remembers you are his wife, not his slave. There have been a number of people here who adopted a policy of just walking out of the room when behaviour became unacceptable. He can't expect you to do everything, his jobs plus yours, all the time. I've been disabled myself, whilst also a multiple carer, so I've seen things from both sides. I found counselling really helpful, I learned how to "manage" everyone's expectations. Most important of all, I realised that for some time every year, I needed to get away from absolutely everything. I was widowed suddenly at 54, 9 years ago, and now I stay in a wonderful hotel in Crete, solely for single people - many are former carers. For two weeks in May, and two in September, I can do what I want, sleep whenever I'm tired, read a book, wear dresses, and makeup. Maybe it's time your husband went into respite care for a week or two so you can recharge your physical and emotional batteries?
From what you say, someone, preferably not you, needs to suggest to your husband that he needs to write a Power of Attorney, in your favour. I know he may well resist this, but if his condition worsens, and you have no access to money, it will be a nightmare. There are others here who have ended up having to go to the Court of Protection, and it's a very long winded process.
The very elderly lose their ability to see the point of view of others around them, and see how hard they are working to look after them, and it seems that this may well be part of his condition? Perhaps if you accept this, and give up hoping he'll say thanks, but never does, it will make life easier?
Have you thought about asking the GP to arrange transport to the London hospital visits? It would take a lot of strain off you (I refuse point blank to drive in London!) and once again, if someone else was driving, it would give you the opportunity to be wife, not chauffeur.
Thank you every one for your profound advise and wisdom, I will take heed, and do all the things suggested.
I have got power of Attorney because he cannot use his hands like a normal person, he manages his Ipad with a special tool, so can access the bank account.
But anything else like chq's I do..........
It good to feel other people understand where I am coming from, rather than see me in a bad light for these negative feelings.
I will post again soon, as soon as I have done the homework suggested, thank you all so much.

Kind regards Jenny
It would be unusual if you didn't feel resentment. Many people don't understand what caring 24/7 52 weeks a year involves. Most of all, the complete exhaustion but somehow you just have to keep going even when your body is screaming at you to stop, lay down, and sleep. I call it Clapped Out Carer Syndrome. It's vital to make adjustments to minimise the work you do. When I was disabled, my son bullied me to get rid of all the flower borders in the garden. I hated this, but it was well worth the effort. Now I have a large expanse of grass, and a lovely patio across the back of the house, with lots of troughs with my favourite hydrangeas, fuschias, geraniums etc. My sons cut the grass for me, it takes less than half an hour. I also have a dishwasher and washer/dryer, and still have my tumble dryer. I know some people love the smell of washing hung on the line, but I simply don't have the time and energy.
Jenny, have you contacted crossroads, Surrey? Web site here:


They provide three hours respite care a week. Unfortunately, there is a long waiting list for free care, but it may well be worth your getting on the list now so, in due course, you can have a regular break.
Dear (new) Jenny - I wish I had something encouraging or uplifting to say, but that's hard to find in your circumstnaces.

First off, I would be amazed if you didn't feel resentful, or stifled, or chained to a life you don't want and does so little for you, and regret the independent life you once had.

Your husband's condition sounds absolutely ghastly - what a dreadful, dreadful affliction, whatever is causing it. Sounds to my uneducated mind the sort of impact that Motor Neurone Disease has - slowly paralysing and eventually killing the patient. Horrible horrible horrible.

I do see why your husband, very understandably, looks at everyone else in the world and considers them better off than him, yourself included. So I can see why he calls upon you so, so much.

That said - yes, you DO need some breaks, you have to, or you will collapse (or worse). If finances stretched, then of course I'd say get some carers in, at regular slots, to give you 'time out' from the endless being on-call for him. I hope that maybe some volunteer carers might be found? Would any of your local churches be able to help do you think? There are some very kind people to be found in most churches! Or, perhaps, I wonder if your local hospice charities might help? Or even, perhaps Marie Curie nurses? We tend to think of hospices as only for those 'at death's door' so to speak, but they often step in when death is not imminent, but, sadly, inevitable.

Speaking of which - I'm going to say something that might sound dreadful, but it does need to be said at some point, even if only inside your own head. (I speak as a widow, if that gives me any 'right' to mention such a subject).

It is this: What is your husband's prognosis? Given his slow dreadful deterioriation, what is going to be happening to him in the next six months, the next year, the next two/five years? I would say, for myself, that a 'frank' discussion with your GP (who, I hoped, is in communication with your husban'd specialist consultant - which, again, I assume he has!), would be advisable. Knowing 'what is coming and when' would, I personally would argue, help you prepare yourself (and possibly him) (he may know, he may not want to know - that's his call - but if you want to know yourself, then that is your call.)

The reason I say this is because one of THE hardest things about caring, is not knowing how long it's going to go on for. Obviously, in some situations, the very very saddest which is caring for a child, the answer may be 'way past my own lifetime' (which brings stresses and fears of its own about 'abandoning' our children when we die). But for those caring for partners, or for elders, then the question is less obvious.

I would personally say that if we know, roughly, 'how long' we're going to have to keep going with our caring, it can help us pace ourselves. So many people here 'knacker themselves' in putting all their energies into caring, but don't realise that it isn't short term, it's long term.

So, if you knew your husband's prognosis, I would say it could help you 'pace yourself', and also perhaps, give you impetus to enjoy what you can of any time remaining to him (I'm assuming his condition is life-limited/terminal??). (Remember, I speak as a widow who has no more time with her husband at all.....)

On more practical matters, then yes, I agree with BB, be as ruthless as you can about paring down your environment so it makes the least, least calls on your energies.

As for your sons, great that one is good, and I hope that he, at least, can give you some of the 'time out' that you need from being 'on duty' for your husband. As for the other, well, call me mean and nasty, but personally I'd cut him out of your will!!!!!

Wishing you not 'all the best' bcause there isn't one in this grim situation, but certainly, certainly saying that you have EVERY REASON to feel resentment. You're not a saint, your a wife, a wife who is without any doubt whatsoever having to cope with the 'in sickness' bit of the marriage vows.

I hope that things can ease, even just a little, and lift that dreadful crushing burden on you, even if only a fraction.

Kind regards at a grim time, (old) Jenny
I care for my husband who has MD which has the deterioration & loss of motor control that your husband has. We aren't so far down the line in that my husband can be left at home alone though I am on call for falls etc & he is unable to go out alone. My husband & I both read this with a great feeling of compassion for you both. Somewhere in all of this your relationship has got lost as well as your independence and communication.

Make things easy for yourself around the house & garden as several people have said. Do you need fancy flower borders that need weeding? Do you need all those nick nacks that need dusting? Do you need to iron everything or can you get away with using a tumble drying & folding?

You both need other people & interests in your life in order to make life more enjoyable. Contact social services & get all the assessments. Even if you need to pay towards carers isn't it worth it? Paying for a couple of hours respite so you can get out & do something independently is well worth the spend. After all what are you keeping your savings for? Isn't it worth spending for a better quality of life? It would also give you & your husband something new to talk about.

A big thing which may be too big a thing for you to consider (especially considering adaptations) is have you thought about moving house? Selling a bungalow in Surrey would fund a nice adapted bungalow somewhere much cheaper with money left over for trips out, carers etc. Hard work to do but worth thinking about?

You both need your own space in order to survive as a couple. Then maybe going out together may turn back into a pleasure and not a chore.
Just a little word of warning if you are considering selling your house. If this leaves you with more than £23,000 in savings, you will be expected to pay for all care yourself. However below that figure, SSD will contribute. (Unless of course you qualify for NHS Continuing Healthcare). If your husband needed residential care, because you are living in your marital home, the value of the house will not be considered when doing an SSD financial assessment. It is absolutely vital that you take specialist advice if you are thinking about this route. The basic rules are in the Charging for Residential Accommodation Guide - CRAG for short. Google will find it for you.