Being a carer... it’s so tough

When I set about this task for my OH who had PD, a friend said I should build in time for myself - that I would not be able to do it long term if I did not have some space.

So I did - I employed a friend to sit with him on set evenings so that I could go out and recharge my batteries. As he got worse, professional carers were needed, and then a nursing home. But I did find that building in time to let go was critical for me - it meant that I did not put my life completely on hold, which helped me through. The idea was that I would be able to pick up the threads of my life when I no longer had full responsibility for his care. This did not quite work out, as lockdown was upon us when he went to a nursing home and subsequently died.

I too feel concerned about your OH's approach. He is indeed right that you should accept how she is - nothing is going to change that she is totally unappreciative of what you do for her: but all the rest should be open for discussion. Should she be living with you at all? Can you cope with that? How can you divide up the caring tasks fairly? How can you build in time for yourself with no caring responsibilities? How can you future-proof the arrangements? - looking for care options for when she gets worse. Could you employ a carer once a week and both go out for the day as the weather improves and lockdown is eased?

You do not have to do all this - you can discharge what you feel as your duty in ways other than being basically her sole carer. Sharing the load is a different way of doing what you see as your duty.

A Carer's Assessment from social services is your right. Unfortunately the assessment no longer seems to carry with it positive consequences - I found this out when I insisted on having one, hoping that some money towards help might be forthcoming (as it used to when I was a social worker in adult services) but the sw admitted that it would not, and that it has become basically a paper exercise to tick a legal box. I would love to hear of other people's experiences of this.

This current arrangement is not working for you, and it is not a dereliction of duty or of your love for your OH to say so and ask to discuss new arrangements.

I was widowed then a few weeks later dad died. Mum came to live nearer me as she became more in need of help. She became more dependant and she and the carers called me at all times of the day and night. There was no one else. She had mild dementia which got steadily worse. I was working and visiting every day, cleaning, washing cooking etc. never sure what I would find. It was very difficult. After one of several hospital admissions I realised I couldn’t carry on. Mum wasn’t unkind ( unless she had an infection!) but she was demanding. I was beginning to resent the demands she made. We discussed things and she went into a care home. She was very well supported and cared for and I enjoyed going to see her, take her out and share the time she had left. I had my mum for a few years and I had my life back. Being the carer is exhausting both mentally and physically. I have no regrets about her going into care.

Lucky seems to have had a bad experience as far as Carer's Assessments are concerned. Round here (Leics) they seem to work quite well. Does your mil get Attendance Allowance? If not, please ask AgeUk to help you apply. It sounds as though you would be eligible for the lower rate which should enable you to buy in help.

I should like to endorse that muppett1. It was a source of great sorrow to me when my OH had to go onto a nursing home. But we had tried just me, then me + carers 4 times a day, then me + a live-in carer. None of it worked, even with hospital bed and ripple mattress, a standing aid, catheter and goodness knows what else - the last live-in carer said he needed two people to transfer him and she could not manage safely.

I wept buckets when he went into the nursing home, even though it was a newly-built state-of-the-art one.

They looked after him very well - all the heavy stuff and the nursing stuff was dealt with and I could go and spend time with him every day for several hours. I would like to say it was quality time, but for some of it he was yelling obscenities at me, accusing me of going off with a lesbian, and in a state of terror as he though he was being cut up and put down the sewer. It was appalling; but the staff dealt with it all so well and gave him a peaceful end.

There comes a time when you have to know when to throw in the towel and let a loved-one receive the care they need that you cannot give.

Harrowing stuff, and it haunts me still.

Good idea about AA kitty - we got high rate and it did help.
I am glad that Leicester has a better system with carer's allowance.

I have a great deal of sympathy for your predicament, nannyKat. You are being treated like the much-maligned 1950s housewife, so many of whom, including my mother, nursed elderly relatives in their own homes. You are receiving little support and no appreciation from your mother-in-law and husband, which would go a little way towards alleviating the situation.
Things will not improve, they will deteriorate and if you carry on shouldering this burden because you consider it to be your duty you are the one who will suffer, physically and emotionally. Your husband has to play his part, financially if he is incapable of performing household duties; he can provide a cleaner and respite care, and you certainly should make regular time for yourself, away from the house.
Your mother in law sounds as though she has a will of iron and will give no ground; there is no virtue in making yourself a martyr and being treated as a member of the lower orders by an ingrate.
Sorry to be harsh but I have seen the result of caring long term for elderly relatives on two friends, whose later working life and retirement plans have been ruined by demanding parents and parents in law.

Oh nannykat stop right now and take a breath, make no wonder your mad ! I feel mad and frustrated for you. Why is your husband only doing medication ? Can’t he change a bed or put the washer on, or are you being a martyr in thinking there’s only you that can do these jobs efficiently.
If it was my dh he would be having a word with his mother to show some respect for all your doing.
Please consider getting some help, it’s good advice to start now, even if you think you may not need it, things can change very rapidly.

Luckygirl, that all sounds so hard I have had mixed experiences with the carers assessment too. I found the more professionals I got on board, the more social services listened but none of this is easy or straightforward. Over the years I have also found it often down to how good your social worker is or what sort of social worker they are. I'm sure they all work hard in very stressful environments though - I certainly wouldn't want to do it.

NannyKat lots of good advice on here. Especially the attendance allowance and the Carer's groups. My local carers group organised special events and al sorts of support before lockdown. Hope you can find something similar.
As far as your DH goes. Can you not list all the tasks that need to be done and ask him to take responsibility for some of them? Also schedule a time table with time off and away from the home for you. Explain that whilst you are gone he is responsible for everything and you expect to come back to find his mother fed and cared for. Then (when things open up) book your self something totally self indulgent. Hope things improve.

Really appreciate all responses and advice given. I took myself out for a long walk yesterday and the sunshine and the fresh air really helped.
My husband tries to help where he can, he does work full time and his job is very consuming for him. I dont feel he is selfish because he looks after me well mentally and he does support me. When she was revolting a few nights ago, he stood up for me and told her a few home truths. I know in time things will get worse and care will probably be the answer, but right now I still feel we can take care of her between us. I have been in touch with the suggested bodies and have found them helpful - even down to this forum which was suggested by them.
Thankyou all for the concern - just needed to know others are in or have been down this avenue as well as me

Nanny you have committed the cardinal sin of drip feeding - you really should have said he works full time - that’s not an incidental fact. Anyway glad you’ve had some useful advice on here - hope things improve.

I agree with Hetty58.

Are you claiming attendance allowance on her behalf? This will help you to buy some cover so you can get a little time to yourself.
You need to talk to your husband and make him understand how you feel.

I dont think him working full time makes a huge difference.

Plenty of women do that and still care for others.

OP, you need to decide if you want to reclaim your life and live it to enjoy it.

Your dh can coordinate carers to care for his mother.

This is seriously impacting your quality of life - you can still help occasionally, but being the main carer 24/7 is a job you have to pick, not being assigned with and feel you have no choice in the matter.

suziwoozie - it never occurred to me to even mention that, I didnt thin it mattered what he does- in fact - I work full time too - from home - useful as I do have work to keep my brain working.

Actually, Hithere, I do think a spouse working full time makes a great difference. When we had FiL here and dh was working long hours in a demanding job, it meant I had FiL from at least 8 in the morning until 7 at night, non stop.

The pacing, the endless repetition of the same question, the demanding to go out on his own when I knew he’d only get lost or run over, the refusal to wash or change his clothes, the truly frightening rages now and then when he was frustrated about something over which I had no control.

The endless, endless patience I had to exert, all day, every day.
Plus I was trying to work from home. And he was often up and down half the night, banging and shouting and demanding to go out at 3 am.
It was relentlessly, utterly exhausting.
And I had always been very fond of my FiL.

In the end a care home - and it was a brilliant one - was the only way.

NannyKat I cared for my mother who was always very grateful for anything that was done for her and the care was shared with other family members too, so it must be very hard for you. I also had a young family to look after, DH worked away (and I had a part-time job).

Your husband needs to have a reality check; unless he works away all week or for weeks at a time, he can take over when he is home. She is his mother - either he does far more or perhaps it is time to look for a care home for your MIL, although that is not easy at the moment.

I think Hithere was saying it shouldn't matter if he works full time he should still be pulling his weight. That is how I read it. I don't think it minimised what the original poster was doing at all. I do understand what you mean though Witzend, most people really don't have a clue. I have been met with lots of judgement for letting my daughter, who has a severe disability, move out into 'independent living' off my own family, friends, strangers. The 'oh we would have helped you more' crowd. None of them helped me practically beforehand (and that is fine- it really isn't their place if they don't want to) and their issues around it aren't my problem. My daughter deserved care I couldn't give to her and we both deserved a relationship with one another that didn't involve me being half awake and a physical wreck.

Janejudge
You nailed it

It feels like he is using his full time employment as an excuse to avoid his responsibility.
It may work for some posters because he is a man.
If it was a person with ovaries, very different feedback would be given.
The OP would be even questioned why she is not helping her mil.

Meanwhile, OP is working 3 full time jobs daily, for something she may not be qualified, in hostile working conditions, but "she has to get used to it".

What would happen if OP wasnt there to take care of mil? Who would do it?

There are definitely unrealistic expectations on women to be the care giver in a variety of situations. There is also much more negative judgement of women in care situations. You actually only have to think of parenting. A man praised for taking the children out shopping - oh isn't he good? he is trying his best with screaming child. A woman with screaming child, couldn't she handle this better? lets all stare and tut at her

I realise that is a different thread!