Sick to death of gendered assumptions/judgements around my care of DM

[bringincrazyback]

I just really need to get this off my chest. Elderly DM has Alzheimer's plus one or two physical health issues, and lives with me and DH. I wfh 4 days a week and my health is poor (chronic pain/fatigue mainly, though there are other things in the mix). This means that I need to rest a lot and can't always predict how my health will be from day to day. Not to the point where my mum's health/safety are compromised - her care is never neglected - but enough that I'm not able to do it all myself. So my mum has carers for an hour morning and evening to get her up/to bed and help with personal care. I do everything else.

DM has had a raft of appointments recently, doctor/dentist/podiatrist. Pretty much all routine/recurring stuff but not always with clinicians I've met before. And time after time I am seeing a look of puzzlement (sometimes tinged with judgement) come over people's faces, both male and female, when I tell them that although my mum lives with me, paid carers handle her morning/evening routines, most of her daily personal care and provide additional companionship alongside the time DH and I spend with her.

There are myriad reasons for this - it's mainly down to my work/health and the fact that my conditions make me pretty useless in the evenings which is when she needs the most support (she suffers from sundowning, where I never seem to manage to reassure her very effectively but the carers are markedly more successful with this). But also partly that left to her own devices she won't wash/brush her teeth/take care of herself generally and I just don't have the mental or physical bandwidth to address this, nor the time on work days.

I've seen the puzzlement-tinged-with-mild-judgement look numerous times over the past couple of weeks and it's grinding my every last gear now. This has been going on ever since I first put the regular care in place, including from the carers themselves on occasions. I'm already carrying a lot of guilt for not doing it all myself, and this really doesn't help. Pretty sure I'm not imagining it either - I've seen it happen often enough now. I also see it from friends/acquaintances sometimes if the set-up happens to come up in conversation. Ditto if it ever comes up that DM has her own separate living accommodation within the houser (by mutual choice including DM's, so we're not living all on top of each other 24/7) meaning that I'm not with her every waking moment as people seem to think I should be.

And what really pisses me off about this is that I seriously doubt there would be any puzzlement/judgement in the mix at all if I was a man. In fact, I'd be applauded for the simple fact of having DM to live with me. It's so tiresome the expectations that are still placed around women in this area of life.

Just to give some backstory, I've been caring respectively for my dad (now sadly passed) and then my mum now since 2017, not always single-handed, but I've always been where the buck stops, so to speak. No siblings. No family where we live now. Due to some of my mum's problems worsening (mainly extreme passivity to the point where she won't tell me or the carers when she is in pain/unwell in any other way or needs practical assistance) I'm not even sure how much longer this arrangement is going to be practical/safe for her even with carers in the mix. I'm trying to keep her out of a home as long as possible because I honestly believe she would just decide to die - she is an extreme introvert with social anxiety who most of the time doesn't really seem to want people around her at all. Since losing my dad she doesn't really have much will to live, I sympathise deeply and do what I can do keep her spirits up, but nothing seems to help much. She swears blind she isn't depressed, I personally think she is very deeply depressed (and has been since my dad passed in 2019) but she flatly refuses any suggestion of this or any treatment for depression.

I know none of this is DM's fault, and I'm aware gendered assumptions are far from being my main problem here, but I'm only human, I'll be 60 in a couple of years, I'm not well and there is only so much more of this I'm physically going to be able to do. And yet people judge me as a woman for not doing it all.

Apologies for the rant but it's 2025 and this issue is really not helping my mental health, and I figure aspects of this might be relatable to some on this board. Is it just me who thinks I wouldn't be getting any of this if I was a man?

Are you sure it's sex related judgement here?

My first thoughts are this is not around that at all and wondered what "looks" you're interpreting this way.

Ask anyone who has been through a similar experience lately and they will completely get it.

Throw in a completely unreasonable family member abroad and actual siblings on hand (daughter who was awesome and a son who was less involved but did most of those appointments you list) who are doing all of the myriad of day to day care and appointments getting blame, criticism and judgement from the sibling a few thousand miles away and that is us.

It is an absolute minefield. This is your time to challenge the social conditioning you have been reared with and tell people to back right off. Their time will come.

I think the reason it feels like it's gendered/like there is judgement in the mix is mostly because it tends to be accompanied by comments that also sound surprised, like 'Oh!' 'You have carers?' or on a couple of occasions 'Why do you have/need carers?', that sort of thing, I probably should have mentioned. I just don't think it would be directed to a man of working age because people would naturally assume he worked, whereas I seem to be finding myself having to spell it out.

I have huge respect for all that you do for your mum. Many of us (including me) for many reasons could not/would not contemplate having a parent living with them and ultimately being responsible for their care. I’m sorry to hear the response that some healthcare professionals and others have given you. I wonder in some cases if it’s more of a careless assumption rather than a particular judgment of you?
You seem to have approached your mum’s needs in a very empathic but realistic way - it helps no one when people over reach or make themselves ill by doing too much
you should never have to justify your choices but I wonder if it might help (for example when meeting new carers) if you briefly mention that your own health problems mean that you and mum need additional support/care. This might shut down any silly assumptions/judgements?

I agree. Surely this is pretty normal. Both sets of grandparents of mine had carers in to look after one of them while the other was still alive, and then once one died, the carers continued regardless of who else temporarily or permanently lived with the surviving grandparent. My neighbours have carers coming in for him despite a daughter living next door and his wife living with him.
I doubt any HCP thinks that carers are only ever employed for people who live alone.

I can't believe they would all look at you with this 'puzzled/ judgemental look'.

What do they actually say? If it's nothing assume they think nothing. What does it matter anyway?

It's perfectly normal for someone to have carers for their dementia suffering parent, even if they live with you. If they think otherwise they're wrong. But I just don't believe they would all think that!

I think you're right in saying there's an expectation around mother's/daughters especially, but I think you've been unlucky to have experienced any judgement on your current set up. Which seems very sensible!

I believe @bringincrazyback the hospital were looking to discharge our family member. In hospital everything involving moving there was 2-1 care for months on end and this 2-1 care was on her care notes but they were going to discharge her to her daughter’s home with a service that might be out to see her in 6 weeks because apparently her daughter could develop a spare set of arms and legs in the meantime to provide the level of hospital care she was getting.

It was truly awful and then the abroad daughter wanted her to go back to her sister’s home in spite of the absolute break down her sister and brother would have experienced with the care level required. There are all sorts of unrealistic burdens and judgements landed on carer family members.

You also can’t imagine situations where people judge others particularly women who are providing care to elderly relatives.

It is real, it is common and if the OP is experiencing it she is entitled to speak about her experiences on the Elderly Parents section of a support website. I believe her, I’ve experienced it first hand and it is an issue.

If you’re WFH who are all these people whom you believe are judging you? I’m assuming your DM is paying for the carers - there is no reason to share your DMs private information is there?

@Afternoonbath

i found @Lemonysnickety post fairly clear.
this was her situation:

A relative was in hospital. Due to their needs 2 carers rather than one were required to safely look after them. However when considering discharge this was ignored and an unsafe discharge was planned (to a daughter who would somehow do the work of 2 carers)
meanwhile, a sister living abroad agreed with the unsafe plan and didn’t care about the pressure put on the local family/daughter

Yeah, to be clear, most people I interact with over my mum's care don't act like this, it's by no means all - but that sort of makes it stand out more when people don't seem to get it, if that makes any sense? I mentioned in a reply to a pp the sort of things they say, and sometimes when it's coupled with a certain kind of look/tone of voice you do get the definite impression there's judgement there, that's the only way I can explain it really.

What does it matter is a fair question, and in fact it's what DH keeps saying to me, but I'll be completely honest here: there's a part of me that believes I should be doing everything for her, even though I physically can't. That is in no way a comment on what other people's care arrangements should be, btw (nor even a belief I rationally espouse), it's the result of a whole shed ton of conditioning, mainly from my dad, who treated my mum like a queen on a throne, expected me to as well, and unfortunately did a lot to infantilise her in the process... it's very complicated. I've been doing my best for years to crawl out from under this conditioning, which basically says that they looked after me when I was little therefore I owe/d them everything. (My dad was an amazing man and a good parent for most of his life, but sadly once he became ill I was relegated to servant status as all his frustrations that he could no longer 'look after' my mum were turned on to me and resulted in borderline emotional abuse at times.) I often find myself thinking that my dad would be disgusted with me for turning my mum's care over to paid carers, and rationally I'm fully aware this is unrealistic nonsense that I should dismiss, but unfortunately it's hard to get my inner child to listen, so to speak. I'm planning to get some counselling for this, and probably should have done so a lot sooner as I haven't managed to shift it in all the years I've been caring for one parent or the other.

That was my understanding too.

Thank you. I do understand. I had an inkling it might be linked to guilt on your part because you'd ideally wish you could do everything for her. I'm glad most people aren't judgemental as they've no right to be. It's literally none of their business.

As an HCP I would be sure they are not judging you. You’re doing much much more than most!

It depends on the HCP.

When my late husband had his stroke, HCPs in the rehab ward expressed surprise when they realised that I was not giving up my job. (I was 53 at the time.)

We were in the process of moving my mother in with us - she had dementia and I had a care package for her. We'd built on another bedroom and a wet room.

Close to discharge, I went into the rehab ward to be told "I've had a conversation with DH and we've agreed that you'll make up his tablets into a pill box for him each day..."

I wasn't in the best mood - I'd had a hard day at work, was organising the move for Mum (had been staying with Mum while DH was in hospital), was obviously concerned about DH's health and now this.

"Really? When was this decided? One more thing for me to do? You didn't think to ask me first?"

"Well, if you're not willing..."

"I'm willing to do it. That's not the point. You don't get to decide things for me without even the courtesy of asking me about it." [This wasn't the first time an assumption had been made. There were also other issues relating to the discharge. ETA DH was over 70s, so certain protocols had to be followed. They wouldn't have been, had I not been aware of that following them being ignored on a previous occasion, following his triple bypass.]

When I asked for advice about which pillbox to buy, I was told that they weren't allowed to advise, so I bought what I could.

I was told that DH would get interim care visits three times a day. Then they cut it to two before he got home: "Leave a sandwich for him."

The lead interim carer took one look at me on the first day and cut the visits to one a day. After two days, they cut them completely.

When two HCPs came for a follow-up visit the next week, I told them that they'd need to put care in place for lunchtime - DH couldn't get into the pill box. (He could manage the pills at the side of the box, but not those in the middle/lunch section.)

Suddenly, it was possible for Fife NHS not only to recommend an appropriate pill box, but to provide it - a Pivotell.

Luckily, DH was compos mentis following his stroke, though there were mood swings directed at me which I had reported to the ward nurses: "Ha, ha! So long as he's not swearing at us..."

However, he was left with hemiparesis and I had to provide his personal care - that meant dressing him in the morning before I went to work, getting him washed and dealing with toileting related matters as necessary. (The HCPs provided me with two urine bottles and told me that it was my job to get them to my husband at night. As it happened, he only needed to get up once a night and was able to make it to the bathroom most of the time, though I had to get up and put on the light for him, etc. Bear in mind that I was also dealing with my mother's needs during the night.)

Tbh I do actually want to be wrong about this! But there's something about the fact that I've been hearing it more often recently, that is giving me the feeling some people still do have these assumptions about women... I mean I just can't picture it being directed to a man, really.

When DH had his stroke, I made the mistake of saying "I don't know how I'm going to manage!"

I was scolded by the interim lead carer: "I'm in the same situation as you - I'm single and I have two children!"

What?! Two [hopefully healthy] children are the same as two disabled adults?

She was the person responsible for cutting the care allotted to my husband.

Thank you for saying that, you're obviously one of those who gets it! 🙂

Well that’s shocking.

I get it OP. You're doing an awful lot so don't feel guilty or that you should be doing more.

Maybe if they pass comment at appointments, turn it back on them (in a polite manner of course)...

Them: 'Oh!' 'You have carers?'
You: Yes, is there a problem with that?

Them: 'Why do you have/need carers?'
You: 'Why are you judging my mother's needs?'

Make them think about what they're saying.

Personally I'd be biting my tongue not to say something like 'because I'm not bloody Superwoman, that's why!' 🤣

You are projecting your own sense of guilt on them. When they ask why do you need carers they are probably checking whether you are ok and how high the level of your mum's need is. No one is judging you apart from yourself!