Guilt at feelings of resentment

Reading this as someone who spends his days talking with families about caring for ageing parents, because that is what my company does, I want to say what so many of you already have: resentment and love can live side by side, and feeling one does not cancel out the other.

One thing we hear again and again is that the guilt is often heaviest for the carers doing the most. The exhaustion is real, and naming it honestly, the way winterwhite has here, is usually the first step toward getting help rather than just enduring.

Ringfencing time for yourself is not selfish. It is what makes the caring sustainable. Please keep talking here. Being heard matters more than people realise.

- Alex

My husband has vascular dementia and is 80. I have had no experience of dementia but am having to learn fast. He has always been used to being looked after by his older sister as he was the ‘golden boy’ at home. I suppose I have taken on that role myself over time, but it is not easy to do everything for your partner. I am getting older myself and I think it is essential to reach out and ask for help. My husband can hardly walk and just about shower himself with my help. Do make time for yourself as it’s easy to get resentful. I now cannot have a normal conversation with him as he is hard of hearing, but also cannot comprehend what I am saying. His eyesight is also failing so it is quite sad for him. You need to keep strong and again, find time if you can to do what YOU want to do, circumstances allowing - going to a group that you are interested in, crafts, reading club, volunteering if you can spare time. All the best.

Winterwhite I found various charities were wonderful at providing short breaks for mum and dad, like someone to sit with dad for an hour’s chat while mum was at her Alzheimer’s group, dad got a phone chat call once a week when mum went into a home, we even for a short period had a lady volunteer stay over as mum was at the wandering stage, she used to sit on the landing and read a book, so dad could have one night a week good sleep, these were all suggested by their social worker but I m sure there would be other means of finding them in your area if you haven’t a SW
Perhaps there is no such help nowadays this was 12 years ago but worth an ask off your GP or social worker
Please don’t beat yourself up about patience, I still to this day beat myself up about the tinniest negative thing I did with mum dad and Nan who I looked after in my home for four years (with again dementia) and fail to ever see any of the great things that happened or the bad things I prevented happening, all I ever see are the mistakes I made, I guess that’s how us humans work

I am so glad that I have read all these posts this morning. They have been of such comfort.

Yesterday was a very difficult day. I dread the coming heat which is making our life even more difficult.

I employ a friend to sit with DH one afternoon a week. It normally works well, but DH was distressed about something very minor and cried about it and wanted me to sort it there and then when I came back from a walk and friend had gone.

I wasnt as patient as I should or could have been, but it is hard when I do absolutely everything as he is bed bound. He can totter to the bathroom but that is all.

I will go and make a cup of tea and try not to feel so bad. Our lovely younger daughter is coming to stay for 2 nights so that will cheer him and me up a bit. But it is such a hard time for both of us and these heatwaves are making it even more of a challenge.

No-one is a saint. It comes to a point where we all have had enough. Do not berate yourself you are only human. Make a cup of tea sit him down with it and let him watch TV or have a nap to give you some peace!

Is there a carers group near you? My friend and I set one up at our GP practice it was very useful. We arranged a speaker once a month on topics such as lifting and handling , support networks looking after ourselves as carers etc etc.It was a great success and really appreciated by the carers some made strong friendships still going today.
It ran for several years until the practice manager changed and our meeting room became a storage room.
So I realise how fortunate we were but hopefully such groups still do exist and it’s worthwhile asking what is on offer in your area.
My friend and I both now on on our own ,are great friends and still in touch with some of of the carers in our group sadly most have passed now.
Would highly recommend you find a carers group in you area.

exploe your local care agencies and their reputation Pick one and sk for an assessemnent for the tasks you thin they could help in. For my mother I had a helper every weekday to get her up. I gave her a cup of tea in bed befoe the carer came and set the TV or Holiday Screen going. The carer got her up and brought her to the breakfast table where I was all ready withsoft boiled egg etc.

You need to analyse your husbands daily routine and pay for help. I pay for personal help now I have a Personal Assistant who is actually a declutterer come onece a month for 3 hours. She does all the tasks a daughter would do whci varies from packig y suit case for a holiday to sorting out my amaxon account etc. I also have a wardrobe visit for 2 hours from Colour Me Bautiful wher we do change of season and sort out.

We are all individuals so work ou how car can help you. another frindof min has been looking after her husband withMS for 30 years. Shehas arrnaged to have a day off once a week by carers coming in in her absence.

It can be done. Best wishes.

So many of you have endured times far worse than anything I am going through! And some of your comments have been really helpful Thank you very much.

Certainly when the weather is breezier it is easier and he is a bit more lively, but no he does not respond to requests to e.g put these mugs in the dishwasher.

He will watch documentaries on tv and I have just started putting a different art book by his chair every couple of days. He can no longer read continuous prose for long but will look at favourite paintings. It makes my heart break.

When the weather really gets cooler we can walk outside again a bit more but at the moment he still feels dizzy and sways too much. He walks very slowly with a stick.

I just exist.

This may sound too detached, but to me it's being practical with hindsight after caring for my Dad. There really is a time when you have to acknowledge that you can't 'care' for the person any more because they need a care home or a nursing home, ie. to be looked after by professionals. It's such a hazy and difficult tipping point.

Thus eventually (not yet for you), it can be a good idea to explore local homes and finances in advance of needing them.

In the meantime, you are in my thoughts. It must be many, many times harder when it is your precious DH. My DH died of cancer and the scenario for me was a Hospice one.

I agree with all who have said how important it is to have time to yourself, even if you have to ask friends and family or buy it in. Many best wishes.

First and foremost you are only human and your resentment is a natural response to a situation you feel is out of your control. Your role as a wife has now changed to include caring duties and managing all activities of daily living for both of you.
Do not feel guilty at all, these feelings do not remove your love for someone, moreover it demonstrates you are mourning in part the capable husband he once was.
I do feel that it would help if you could find some “me time” to do whatever you enjoy and in doing so, could enable you to look upon this situation differently.
You could contact age concern as I understand they sometimes have sitters who would come in once a week. Alternatively depending where you live some communities have volunteer sitters who will help.
You really do have to look after yourself emotionally. I really do wish you well and hope you can find a way to ease your feelings

Absolutely, as you can afford it, get in help. You sound like you need it and would massively benefit from it and hopefully some respite too. We are only human and have one life, so don’t waste it feeling resentful. Buy in some help, for both your sakes.

winterwhite - how are things today?

You’re definitely not alone. A few years on since my DH’s death, I still feel such guilt that, though I wasn’t unkind, it was very hard at times to actually be kind and loving. He had Parkinson’s and Lewy Body dementia. He suffered from delusions, causing him to be very irrational, and both physically and verbally abusive. I didn’t share much of this with family and friends, as I didn’t want them to feel badly about him. Latterly, he was in a nursing home, and I still have to remind myself that, as well as being because it was no longer possible for him to to be cared for by one person alone, it was also for my safety. It’s okay for us to feel a bit sorry for ourselves when things are hard. Do accept help when possible though.

Please be kind to yourself. Get as much help that you can afford, get family to help if you can. I cared for my husband for twenty years, it wasn’t easy but now he has passed I miss him terribly and though I wouldn’t wish him back as he was ,I am so grateful for our time together.

No paragon of virtue here - I got quite exasperated with my late OH when he was long term ill.

I fully understood why he was behaving as he was and how difficult life was for him, but I often had to bite my tongue, or go away and have a bit of a weep.

It is not just that being a carer is hard; it is also that the person who normally cares for you and is your life's partner has stepped out of that role - so, two losses on the go. Your life is taken up with everything - being a carer as well as doing all the things that were once shared out between you - and there is no-one by your side any more, or at least not in the way they were.

One of the things I did -and I had the support of my family in this - was to ringfence time to be me. I ran a choir and sang in another and that virtually did not stop at all during the difficult latter years. I knew that these things were like breathing for me and to lose them would be disastrous and sap my ability to on in my caring role. I would return feeling refreshed and with more to give. When no family were available, I paid a friend who worked as a carer to be with him.

Please please do not feel guilty. You are human. Resentment is a normal human emotion and however much you understand that he cannot help being as he is it is normal to feel this - you do not resent him, you resent the hand that fate has dealt you both - it is not always easy to disentangle the two, because fate is hiding somewhere whereas he is right in front of you, driving you nuts!

Towards the end of my OH's life, as well as being immobile and incontinent, he was totally insane - he thought I was trying to kill him and that there was a machine in the corner of the room that someone would feed him into and mince him up - it was indescribably grim and required so much patience - sometimes far more than I could muster. It is so hard to feel impatient when you can see someone in such distress. But none of us are saints - definitely not me!

One thing that helped me through was the outlet of Gransnet - so many kind people here who propped me up on the bad days - and this meant I was not moaning to my family who were themselves suffering too.

Please do not beat yourself up - you can only do what you can do and you are absolutely allowed to feel what you feel.

Please look after yourself.

nobody should feel guilty of how they feel. Caring for a loved can be hard work and it is knackering.

Being honest about how you feel isn't a sin.

I think people overlook the invisible worry carers have to contend with too. It's all consuming when you are dedicated to someone

What a mess. Sorry note to self - re-read before you post!

Private care for 2 hours (depending where you live) will be from about £76 if organised through a care agency - but there may be someone locally who is self employed.

Thinking of you.

winterwhite we had carers for my (lovely) mother-in-law for the last 5 months of her life.
She was quite "with it" mostly but had heart failure and so often very tired and eventually, distant.

The point was thatlegally they had to have two hours a day off.
It was considered unhealthy to not have a break.

I know, from the short time we lived with her how much we needed it - and there wete two of us.

Private card got 2 hours (depending where you live) will be from about £76 for an agency - but there may be someone locally who is private.

Just a few hours a week to recharge your emotional and physical batteries would make a big difference I think...

At least you will have something to look forward to.

By the way. My mother-in-law was very happy with her part-time "relief" carers who would ofen sit and chat to her and/or maybe get on with a few jobs in that little visit.
They would often go out with her for a little while.
She would often ask who was coming when and did actually like a bit of a change.

Win win.

I think some respite might be worth looking into.

Your feelings are your feelings and totally alright.

Winterwhite, you have my understanding - we carers are not perfect, of course we are resentful ! My DH has Alzheimers and spends ages staring at clouds. If we attend a family gathering people say " G is on top form " people with dementia mask extremely well - including those with mild dementia. Intelligent people with dementia are experts at hoodwinking others. Behind closed doors it is a very different story ! My DH seens oblivious to his confusion 😕, this of course causes relationship problems. Very difficult after over 50 years of marriage!
You say he has mild Alzheimers, please bear in mind that dementia is very subtle and creeps up slowly but creep up it will ! My DH is now having false beliefs , he told our son a complex story regarding a neighbour of ours saying our neighbour has cancer ! completely untrue ! My neighbour is a good friend and would have told me. Her husband is incapacitated at the moment due to orthopaedic surgery- not cancer. Our son of course believed his father !
My DH behaves out of character, only small issues and only I witness them - being a carer is a lonely job .
I manage by having me time away from home - so important and while I can leave him alone I do . I also ensure we get out together too! My DH has other false beliefs that I wont go in to. I simply say " Mmmm " and walk away before I explode. That is necessary because nothing I say makes a scrap of difference! He is incapable of reasoning.
Hang in there! Does your DH have a diagnosis of Alzheimers? Alzheimers is Alzheimers ' mild ' or not , you must find time for yourself. 💐🌸

Sometimes I have found it helps to react as you would to a small importunate child.

If he asks for something you know is in a bag you haven't got round to, say, "I have not got round to the bag it is in yet, dear. You go and sit down, (or whatever else you can suggest ) and I will bring it when I find it".

If he just stands there, tell him not to.

You need to find what works for you both,

Can you find someone who can come in and be with your husband for a couple of hours or so, once or twice a week, so you have "time off" and can rest, go out etc.?

Yes, this is sadly, what both signed up for in a marriage, and what one spouse has to fulfill unless the other just drops dead with no warning. I doubt that is better than what you are going through, and what I went through.

Having a free time, or , or preferably and a support group or person, so you can let off steam does help.

And if you are offered help, please do take it, even if you feel you don't or shouldn't need it. Tiring yourself out will only make everything harder.

We all get frustrated and at the end of our tether , this heat is not helping, I bet most of us recognise ourselves in what you have written.
My DH can moan for a Olympic Gold medal regarding the weather, too hot then in the winter it's too cold and can't stand the wind as it makes unbalanced , he was always a cup half empty person before his stroke but it has certainly come onto its own since. Yes everyone will say how well they look, while you look frazzled🙄

MawsRosie

Paw was not unlike that in his last year of life - at the time I admit I felt resentment. Now I realise that the cumulative effects of his health sapped him of the energy to do more than survive one day to the next.
Retirement project?
What’s that?
I was far from saintly and still feel massive guilt that I often seethed inwardly.
And yes, you did sign up for it if you promised to love and care for him in sickness and in health, for better for worse etc.

Your words often seem to resonate with me. I have an enormous amount of guilt that I should have been a better carer to my DH. I was so often impatient when I shouldn't have been and yes I did feel some resentment although I fought hard against it. He was ill for a long time and went down hill so gradually that I didn't realise how ill he had become and when he went in for his final heart op he did not survive. It took all his strength to get up, showered and dressed and then could do not much else, such a struggle for him yet ever a word of complaint.Such a shock, never dreamt he wouldn't survive as he'd survived so many other procedures.

fluttERBY123

Join the non-saintly club. If dh were to hover over me I would point at a chair and say sit there, I'll tell you when it's found. Husbands of the ilk you mention, and apologies if I'm getting yours wrong, respond to clear repeated
commands. Tongue only half in cheek. You have to be firm.

I am sorry but I believe you have it totally wrong, it does not work like that with people who are living with a heart & lung condition, who are totally zapped of energy in this heat, due to issues with breathing. Put Alzheimer's in the mix despite being mild, you have no chance to have results if being firm or tough. The only result you would have is to take every scrap of self esteem away from them. They would love to do more but simply can't. I know only too well from personal experience. I feel sorry for your husband if that is really what you do??

I feel for you in your situation. I have no experience of this myself, but I noticed you say "I have plenty of help, I could have more "

Get that help and make your life easier.