boundaries and being forced into care-giving with stepdad

[Imogenlily]

Hi,

I really could do with some advice and viewpoints as I'm not sure if I'm being overly dramatic. Sorry in advance for the length.

My mum passed away at the end of May from Lewy Body and I was her live-in carer until she was sectioned but I was still very involved in her care as I was her LPA etc. I loved her so much but caring for her was...very rough.

By a crappy co-incidence, my stepdad also has alzheimers and we live together - not by choice. It was Mum's house and has been left to me but right now it's going through probate and will go into a trust but they are looking to get rid of this hopefully.

My stepdad has carers x4 daily although these are temporary and he's being financially assessed for permanent carers as he has very limited funds (from my understanding) so he can't afford to go into care and I've been told the new 'aim' is people staying in their homes. He has very limited mobility. He's miserable. Doesn't want to live. Has no interest in anything or anyone. He'd never been social but now he's worse. He's extremely crabby if carers are late - I'm sure most of you understand the types of issues.

I'm emotionally, mentally, physically drained, burnt-out but because I live here, I'm constantly on-tap to everyone involved in his care - carers, OTs, nurses, physio, social worker etc etc - they act like my only purpose is to be his carer, that I provide information for them, and do their job. I'm really struggling with depression and grief. I'm *constantly* interrupted by people and feel like I'm being pushed out of my own house. The house smells of cheap ready meals and his commode. They leave the door open when he's on it, so the smell goes everywhere.

No one visits.

I'm stuck in a house that's too expensive to run, needs repairs that I can't afford, that's cold (literally). That is a shell of the house I grew up in. I can't sell it due to probate (and people objecting to mum's will - yet another stress) but also it'd mean kicking him out and I'd feel like a nasty person kicking out an 84 man with dementia. So I'm trapped here. I have no money until I sell the house.

I'm not close to him - he's a fairly cold person, doesn't do emotion - he never once mentioned mum's name after she was sectioned and only gave me a shrug when I told him mum died. Plus he's always been passive-aggressive with me and a bully at times. He's a mood hoover and creates a really unpleasant atmosphere. The smell is awful. The house is cold, dead. Everything is tied to Bill and his care. People are constantly in and out. Nurses etc constantly ring. I explain his daughter is his LPA and next of kin. They procede to ask me tons of questions regaurdless. I can't plan or do things. I am even wary to go down and get a meal because I don't know when the carers come, if so will they need my help for xyz etc. And now his physio is working he's shuffling round with his zimmer and when he falls again it'll be me who has to deal with everything - last time was an eight-hour wait for paramedics and I couldn't leave him because he goes unconscious. No one thinks that having him mobile might not be safe or good for me.

My depression has gotten worse in the last few months and really bad in the last few weeks. He's beginning to be more mobile with a Zimmer frame but that means he just takes over a space. He has his own annex (lounge/bedroom, kitchen, utility space and bathroom) but his carers constantly go in the main kitchen and I can't really use it when they're in there - and if I am, I get sucked into helping.

What really irritates me is the nurses, he's had a lot of issues with his catheter, bags etc. They keep trying to get me to empty and drain them 'it's so easy' they say. They want me to say if he needs nursing care - how would I know? I have zero medical training. And it's over and over. I know that if I do one thing I'll do more and more and I'll end up as his primary carer. I'm not assertive and terrible with boundaries. I didn't ask for help with mum until it was too late and I was on my knees.

Right now he has a UTI due to his catheter - I was on the phone with nurses last night and this morning - I only had bits of info from the carer and they seemed to think I knew about catheters, how they work etc. The thing that *really* ticked me off was I was then asked if I could go check my stepdad's catheter. For me this felt very inappropriate to even ask me. I told them I didn't feel comfortable seeing my step-dad's genitals and then she reluctantly agreed to come out and check on him.

Am I being too sensitive - is it a normal thing to be asked to do? Is that unfair of me?

Along with my depression I also have CFS and ADHD (recently diagnosed so no medication yet) and I'm on ESA because of them, so I have very little money and can't just move out to get away. My stepdad has two children who are both his LPAs but because they don't live here, I get all the phone calls, I'm the one the carers call up to constantly. I'm tired of it. I've even had times when I'm on the toilet and they call up and I tell them I'll be down in a moment and they *kept* calling from the stairs. I just want to scream.

I had virtually no privacy or life with my mum due to her severe depression, need to be around me constantly (she couldn't cope after my sister's death eight years ago) and even when she was sectioned and eventually went into care, I had to deal with non-stop phonecalls etc, and she could get quite aggressive. I don't want to be bothered. I also hate they keep calling his my dad (my actual dad died when I was seven) and seem to assume we have a brilliant relationship and because I live here there's nothing for me to do other than care for my stepdad. He's also started being aggressive at nighttime - like mum, and the carers call me to help with that. Luckily it's only been a few times, but it's very stressful because it takes me back to mum's aggression and the night she was sectioned (police were involved) - I don't want to remember or relive that awful, awful time.

I just feel so utterly thred-bare and that I'm on the verge of a breakdown. I miss my mum. I try to let various people involved with his care know but they don't listen. I also don't want to tick off my step-siblings by stating bluntly I can't want to care for him due to exhaustion and him being a jerk. I need even the limited help and also things are veyr complicated with my mum's will - everyone has a lawyer and wants a share of the house (it is legally my mum's, morgage paid by her alone). I can't sell the house (which I desperately want/need to) because of my stepdad having no place to go - he also (apparently) has no funds for a care home (he's been very deceptive about money, habitually being in debt etc).

Friends and neighbors have said I need to be blunt to the point of rudeness that I will NOT be his carer in any capacity unless it's an emergency. I really, really struggle to say that. Today was really the first time I said no (over checking his catheta) - it made me so uncomfortable, both to say no, but also that I was asked in the first place. I've had nurses outright say 'you can empty his bag/change his bag' and I stand there desperately trying to think of a reason not - as I said, he *does* have carers - but there have been a lot of issues over night-bags (they say they don't change them etc, nurses say they should etc).

I basically stay up in my room to avoid all the care people - not that it always works. Last week I was having my zoom session with my counselor - and I was interrupted by a carer due a blown lightbulb, the nurse on the phone asking about some random stuff, and someone else, I can't remember who but it was about my stepdad. I can't unplug the phone as it's connected to the fall alarm. It's like I'm not a person. That I have no needs. I sometimes feel I'm going insane.

Can anyone give any advice? I'm sorry for such a long moaning whiny rant. I just don't know what to do. The worst thing is, it what it's making me become. I don't know how long I'm going to be stuck in this situation. What if my stepdad lives another six years, or more? I'll go out of my mind. Not to mention on a practical level I can't afford the house which needs more and more repairs - which I have to somewhere find money from. He pays utilities but not any repairs, food etc. I don't know if he'll even pay utilities if if he has to pay for his care- I can't afford the utilities. I just can't. His daughter is now in charge of his fiances and money is a huge sore-point in our family.

There's been no gap between being mum's carer, her death and my stepdad needing care and I just can't cope. On previous posts I made about my situation people have recommended contacting adult social services who are now dealing with him but everyone - it seems - like they just want me to do all the care or at least be constantly available to help.

Maybe I'm being unfair. I don't know. I know I get highly anxious constantly due to my ADHD and can catastrophize things. Can anyone offer advice? Can anyone suggest how I can put in boundaries or even give suggestions of what they could be. Sorry again for length of post.

ETA: thank you so much for the responses so far, I'll try to reply tomorrow. Just the clarify a few things:

My step-sister is involved with his care, to a degree. It's the immediate things I have to deal with - finding things, fixing things, complications etc. There are some issues between her and her dad so I think she's unconsciously holding herself back a bit, but also because I'm always here there's an assumption I can fix things. I just get really, really tired.

My step-dad does have proper, paid carers but they are currently interim after he was released from hospital. They are trying to put together perminant carers. Some are really good, some not so much. I have nothing but admiration for carers who make it their career, but when you live with someone you can't just go home.

Reguarding checking his catheter. This freaked me out. I'm uncoordinated. Messy. I'd end up doing it wrong - we have trained carers who still mess up his catheter. I didn't go into medicine or health. I had a very steep learning curve with mum and I did a lot of the no-limits personal. I loved her, very much, my stepdad ignored mum after she was sectioned, they had a miserable marriage and never once offered any support whileI was caring for her. I also have personal issues why I didn't want to see his privates (no SA but still issues), so perhaps I'm a bit too sensitive?

Thank you again for the support

 

[scotlass]

what an awful situation to be in...hopefully .someone on here might have some good advice for you...but if I were you ,I'd make it very plain to carers, that you will not be touching or changing cathaters , nursing staff have to be taught how to do that, how do they expect you to be able to, maybe you should arrange to be out when they call, You were your mums carer...not your stepdads..I hope you get this sorted out....x

 

[Monday’s child]

Your situation does indeed sound awful and I sympathise wholeheartedly. You say your mum left you the house, you said he has a daughter. Please tell ss that you are not able to care for him and you are not his next of kin and give them his daughter's details; let them contact her and take it from there. If you have to tell them you are clearing the house ready for refurbishment/ sale after probate, whatever. Just do what you need to do to reclaim your life x.

 

[SAP]

You have every right to be totally blunt with ss, nurses, dr and any other professions. “ I am not his next of kin”, “ I will not be doing any of his care” “you cannot call me regarding his care” etc are all perfectly reasonable statements you can make along with a resounding NO. It is so hard when you a feeling they way you describe, to be able to be this resolute but right and the law is on your side. Your stepdad will be homeless once you can sell the property and ss will be in a tight spot if they wait that long. Don’t let them fob you off. Oh and don’t answer the phone unless it is for you personally and has nothing to do with his care. All the best.

 

[Jaded'n'faded]

Wow. Enough! This cannot go on. Phone social services, tell them you have reached carer breakdown (not that you chose to be his carer anyway) and can no longer care for your step-dad in any way.

Tell them you are on the verge of breakdown and intend to go and stay with a friend (even if you don't!) for at least a few months for the sake of your mental health and stress that there will be no one to look after him. Point out that Duty of Care lies with them, not with you. Give them the phone numbers of his children and insist all calls relating to your step dad go to them in future and that if they call you, you will simply say, 'I don't know and I am unable to help - please ring so and so.'

If you can go and stay with a friend, all the better. Otherwise, work to rule! Any time a nurse/carer arrives, leave the house - go for a coffee or walk round the block, but don't engage with them in any way.

It sounds drastic but it's what you'll have to do otherwise this will continue. You have a right to a decent life.

I wish you strength.

 

[Hermann]

Can anyone give any advice? I'm sorry for such a long moaning whiny rant. I just don't know what to do. The worst thing is, it what it's making me become.

My advice, based on your obviously strong aversion to co-habiting with your stepdad and involving yourself in his care, is to get out of there as soon as possible.

I'd make it very plain to carers, that you will not be touching or changing cathaters , nursing staff have to be taught how to do that, how do they expect you to be able to.

The not unreasonable assumption of carers and district nurses et al. is that, if you are an able-bodied adult co-habiting with an adult with care needs who you are related to either by blood or by marriage, you will be willing to get involved, at least up to a point, in that other adult's care.

My wife lives with me and my parents, and nothing is off the agenda for her: dressing wounds, wiping genitals, wiping bottoms, washing out commodes - all are part of her daily round. The difference is that when she does this she does so because she wants to help me (knowing that I do significantly more butt-wiping et al. than anyone), and because she feels affection for my parents, who themselves showed strong affection for her in the days when they were still compos mentis.

Bonds of affection are clearly absent in Imogenlily's case, for understandable reasons, but changing catheter bags is not something it requires a nurse to do, as long as the person doing it is diligent and, most crucially, willing.

 

[Firecatcher]

First of all I’m sorry you’re in this awful situation. I’m step parent adopted and have had a lifelong struggle with my Mum and step father.

To stand any chance of being able to exit these intolerable circumstances you are going to have to be absolutely brutal with social services and healthcare professionals. In my opinion the majority of social workers are bone idle and won’t lift a finger until they’re forced to.

You need to tell them you’re not prepared to be involved in your step fathers care in any shape or form and don’t let them guilt trip you either. Refuse to deal with calls and go out when carers arrive. Don’t be available at the end of a phone. If people can get hold of you they will try and persuade you to take on stuff you don’t want to.

Refuse to do any of the catheter care - you can’t be forced to.

Do you have any friends you could stay with for a few weeks so that you could inform social services you’re leaving and show them you mean it.

I think you’d be within your rights to serve your step father an eviction notice. He won’t be left on the streets as he’s a vulnerable adult. Social services will have to find a placement for him.

I’d also see your own GP and tell them the impact this is having on your mental health. They will have to document this and it will strengthen your case.

 

[sdmhred]

Hello @Imogenlily

what a stressful place you find yourself in. You have every right NOT to be your step dads carer…..but services will just assume.

Everone here offers you good advice. Think through how best you can be assertive, can you write a letter? Phone the help line - maybe there’s a professional that can do it on your behalf?

Could you go on a mini break? Would things break down whilst your away?

Practice Some responses in front of the mirror so you know what youre going to say ‘ I cannot help, please call daughter on xxxxx’….and put the phone down.

it’s so tough - get someone to be your voice,

 

[try again]

Social services have a duty of care not you. Be assertive .

 

[Scarlet Lady]

The not unreasonable assumption of carers and district nurses et al. is that, if you are an able-bodied adult co-habiting with an adult with care needs who you are related to either by blood or by marriage, you will be willing to get involved, at least up to a point, in that other adult's care.

Why is this assumption not unreasonable, @Hermann ? It seems to presuppose a degree of familiarity with the PWD which might not be appropriate in the slightest, and indeed isn’t in this case. Your wife may be willing to care for your parents because she has strong ties of affection to them. That’s great, but that shouldn’t mean that Social Services or whoever should automatically assume it’s reasonable to expect this, without any idea of what the family dynamic may be. In my experience, Social Services assume a great deal in general which is most definitely unreasonable. If carers are employed to change catheters , then they should get on with it and not expect others to do it.

 

[Firecatcher]

Why is this assumption not unreasonable, @Hermann ? It seems to presuppose a degree of familiarity with the PWD which might not be appropriate in the slightest, and indeed isn’t in this case. Your wife may be willing to care for your parents because she has strong ties of affection to them. That’s great, but that shouldn’t mean that Social Services or whoever should automatically assume it’s reasonable to expect this, without any idea of what the family dynamic may be. In my experience, Social Services assume a great deal in general which is most definitely unreasonable. If carers are employed to change catheters , then they should get on with it and not expect others to do it.

I agree that social workers make sweeping assumptions that family members are willing to care for a PWD and rarely bother to find out the facts. I made it extreme clear to them regarding my Mum and how I was utterly failed by social services as a child. I don’t think they dared try to guilt trip me by the time I’d finished.

 

[Hermann]

Why is this assumption not unreasonable?

Because the adult in question is known to be the sole co-habitant with the adult needing care. If the relationship is so bad that the more able of the two adults is totally unwilling to get involved in the care of the less able, then the question naturally arises what on earth are they doing still living together?

It seems to presuppose a degree of familiarity with the PWD which might not be appropriate in the slightest...

Without knowing for sure what you mean by "familiarity" and "appropriate", it's hard for me to respond to that.

If carers are employed to change catheters , then they should get on with it and not expect others to do it.

Sadly, this is a position that is all too common, particularly in western countries, even among people who feel a lot closer to the person needing care than Imogenlily does. Clearly it's a position anyone living with another adult needing care is legally entitled to have, but, ultimately, distancing yourself from responsibility for all or even just certain aspects of the care of that person increases the likelihood of their care needs not being met. Social Services use the phrase "vulnerable adult" for good reason.

 

[SAP]

@Hermann , I think the OP has made it clear that the living situation is due to events beyond their control. @Imogenlily is not related to her stepdad, he is in the home through default and she is waiting to sell it , probate being the hold up.
I would add that I would definite not have been willing to manage person care on any level for my own father and only have done the very minimal for my mother.

 

[Hermann]

@Hermann , I think the OP has made it clear that the living situation is due to events beyond their control.

I've acknowledged this.

@Imogenlily is not related to her stepdad

She's related by the marriage of her mother.

 

[Violet Jane]

What an awful situation for you. If the probate likely to be finalised any time soon?

Definitely refuse to get involved with any personal care (washing, dressing, toileting, cleaning commodes etc) or medical matters (changing catheters, dressings etc, collecting samples, giving medication). If SS want your stepdad to stay at home then the care package must cover these matters without input from you. Tell SS that.

Unfortunately, it will be difficult to detach yourself from the carers and health care professionals completely because you live in the same house but you should still keep repeating that somebody else is NOK. If the daughters have a POA for health and welfare then tell everyone you speak to that.

If the carers have problems with your stepfather (with his catheter, aggression etc) then tell them to report this to their manager and SS as you can't deal with these problems. You aren't NOK and don't have a POA.

I would try to get your GP on your side if s/he is sympathetic. Get him/her to tell SS that you have your own serious health conditions and can't provide care or supervision to your stepfather.

I'm afraid that SS and the daughters will let you struggle on until you say no more.

 

[Imogenlily]

I've acknowledged this.

She's related by the marriage of her mother.

Hi I just wanted to clarify with my stepdad, yes she married him, but we are not family. He has never been interested in helping with mum's care and made it very clear he had nothing but contempt for her and refused to help with her care at all and had to be cajoled to go to her funeral. I do help him to varying degrees with care along with his paid carers, but I draw the line at looking and checking his genitals.

I wouldn't want to do it for any male I knew, relative or not. I have personal reasons for this that I'm not comfortable disclosing.

My mum was also planning to divorce him and the dementia stopped her. He has no interest in family - either his own kids or step-children. I disagree that marriage automatically makes family. Time, energy, commitment, love, support, kindness does that. The only reason I am living with him is because neither of us have a choice - he has no money for a care home or a place of his own. I don't feel I can make him homeless so we're stuck. I simply don't have the energy to care for him full time like I did my mum.

 

[SAP]

@Imogenlily i totally agree, being a step daughter is neither legally or morally binding. You don’t have to explain any further. You are under no legal obligation to do any care and for your own health you need to make a stand.

 

[Imogenlily]

What an awful situation for you. If the probate likely to be finalised any time soon?

Definitely refuse to get involved with any personal care (washing, dressing, toileting, cleaning commodes etc) or medical matters (changing catheters, dressings etc, collecting samples, giving medication). If SS want your stepdad to stay at home then the care package must cover these matters without input from you. Tell SS that.

Unfortunately, it will be difficult to detach yourself from the carers and health care professionals completely because you live in the same house but you should still keep repeating that somebody else is NOK. If the daughters have a POA for health and welfare then tell everyone you speak to that.

If the carers have problems with your stepfather (with his catheter, aggression etc) then tell them to report this to their manager and SS as you can't deal with these problems. You aren't NOK and don't have a POA.

I would try to get your GP on your side if s/he is sympathetic. Get him/her to tell SS that you have your own serious health conditions and can't provide care or supervision to your stepfather.

I'm afraid that SS and the daughters will let you struggle on until you say no more.

Thanks for the reply. The probate is horribly messy. My eldest brother is contesting the will, is threatening to take us/it to court. My step-siblings also have a lawyer and one reason I'm not kicking out my stepdad is I want to avoid them suing for the value of the estate too. The will is complicated and messy and everyone is arguing about what they deserve. If it goes to court, God knows how long this will drag on - and I can't sell the house while that happens.

I do help with some elements of care but try to just stay upstairs unless they really need help, partly because of my CFS, I'm often in pain and exhausted.

My step-dad has a son and daughter, both are LPAs but the son lives the other end of the country. I do tell people that my step-sister is next of kin (they still had my mum while he was in hospital and kept ringing her mobile despite being told she'd died) but they just keep ringing me/the house phone. It's messy because she only knows certain things and I have keep explaining over and over the situation. My SS is involved but I think there's a limit to what she'll willing to do. She's currently off work with stress so she won't be around as much when she's back at work. We get on pretty well, but I'm always worried about rocking the boat. Mum and my stepdad had a bad marriage and some things have never been forgotten (on either side)

I agree it's difficult to detact when I live at the house. I will try the GP. My brother is really worried because he thinks I'm close to a break-down. Maybe the GP has some advice, if I can get an appointment!

Thanks for your reply, I really appreciate it

 

[Imogenlily]

@Imogenlily i totally agree, being a step daughter is neither legally or morally binding. You don’t have to explain any further. You are under no legal obligation to do any care and for your own health you need to make a stand.

thanks for your reply. I don't dislike him for being my stepdad it's his attitude towards me for the years I've known him. My health really isn't good right now, physical or mental and I really need a break. Thanks.

 

[Imogenlily]

@Hermann , I think the OP has made it clear that the living situation is due to events beyond their control. @Imogenlily is not related to her stepdad, he is in the home through default and she is waiting to sell it , probate being the hold up.
I would add that I would definite not have been willing to manage person care on any level for my own father and only have done the very minimal for my mother.

thank you for your reply. I understand people define family is different ways and it's not an issue over 'he's not my real dad' it's both his attitude to me for years but also my own physical/mental health. It was a huge shock caring for my mum and absolutely exhausting. I can't do it all over again. Thank you.