Non-family informal care role, big problems

[Lucens]

Apologies to those who have read/ replied this elsewhere; I didn't understand there were different communities. and sorry it's so long.

I have become involved in supporting a non-relative, an acquaintance,

who has had increasing serious medical conditions, leading to

disability. These are physical, not cognitive impairment, except

insofar as serious illness and pain naturally causes psychological

suffering too.

This person has adult children and some other

relatives. they take a mostly hands-off approach to her and her difficulties. One son in particular, the one she sees more

often, being nearer in distance, is very domineering and has taken a

dislike to me. She adores him, is almost totally uncritical of him,

often appearing scared or subservient to him. In short, he bullies

her. I am concerned for her, but the situation is difficult, as he

sees me as interfering, and he thinks he knows best, about everything.

she looks up to him, but

his influence is not entirely to her benefit. I am trying to be fair

and calm here. I have gone with her to every medical appt for the last

4-5 years, literally hundreds. She still asks me to do so. Last Wed

for example, from 10;30am to 8pm, and I am requested next

Mon, to be ready from 7am, also Tues from noon to all afternoon. she

has to travel in hosp transport, so there is much waiting around.

Her

sons have never gone to any appt with her. She had two critical

episodes in Resus this year. I was with her throughout. Her son implied that I ought to have

let her sleep. I said sleep did not come into it, that the dr said

they might not be able to save her life. This was met with the same

stony stare from her son. No reaction.

The whole situation has made me quite ill at times, felt I am going

mad. I was with her every day for ten weeks in hosp; her son came

occasionally. I got up and out early, for meetings, at greater expense

to be present, put her concerns to drs, matrons, therapists etc. Her

family never did.

Reading today of a woman who suffered coercive

control from her partner, I do have concerns. but if the one who is

being oppressed does not see it, would never dream of complaining,

what can an outsider do. She sometimes speaks to me harshly, unfairly

and I do feel taken for granted. But I cannot leave her, she is so vulnerable.

Her son tells her she should not have

the careworker more than once a day, despite being doubly incontinent,

bed-bound, with unhealed extensive surgical wounds, upper and lower

leg, immuno-suppressed, and severe arthritis etc. she cannot use knife and fork, has to have food pre-cut. he says she should

be able to clean herself. Not only is this impossible, it is not safe.

She nearly died, twice, this year from galloping infections. Her son

does not defer to anyone. He seems to have a Napoleon complex. I

avoid him. He is scary, aggressive, dictatorial, critical, no humour,

or empathy. She loves him, deludes herself that he has her best

interests at heart. The careworker mentioned to him that there was no

bread or fruit, he said he was busy. He was in the house from 3-10pm,

with a car, less than half a mile from late opening shops. This is

only one example of his attitude.

He comes to her house to hack at the

garden and move around things in the house, much of it his junk, also in sheds. He has 4-5 old cars taking up space,

impeding the use she could make of her premises. It's as if it is his

house and he lets her live there if she does as she's told. Another

friend commented that his idea of clearing a space for her to come

home to, had made the living area like an obstacle course.

I had to persuade the careworker, who is excellent, not to leave, as

she said the son is crazy, doesn't want to run into him. which I can

quite understand. but the mother sees no wrong in him, and gets angry

at me if I suggest maybe her family could ring the GP, or get pads for

her, or apply for blue badge etc. says they don't know about these, and that I'm having a go at her family.

so why am I left to do it by them, yet accused of interfering in their family. but that aspect is secondary. I'm really worried about her.

The person who is closest to her, has the most influence, brooks no opposition, is not good for her. maybe he is mentally disordered, I don't know. this morning he insisted she get into chair before careworker came. so not cleaned or pad changed, after all night. hence mess spread to front bottom, risking ingress to bladder, esp as she has catheter. already has multi-resistant klebsiella urinary tract infection. nearly died in April with uro-sepsis. careworker told me as she was concerned, knows risks.

I cannot report to any officials as the mother loves her son, won't hear or confirm a word against him. would cut me off, leaving her further in his clutches, and the good careworker would leave too. don't think she'd last long in those circs. what a waste that would be, after 2 close shaves, this spring, multi surgeries, etc.

and so I am snookered.

any ideas, support, suggestions gratefully received. thank you

[Hidden]

Hi Lucens,

First of all can I offer you a warm welcome to our Care community and I hope that you'll receive some answers which might be of help to you in what seems to be quite a complex situation.

You sound over-involved and exhausted from having, somehow, bitten off a lot more than you can comfortably chew in caring for someone who isn't family to you but for whom you feel a great responsibility. And its really commendable that you haven't just put your foot down and walked away, absolving yourself of all responsibility.

It really is time for some plain speaking.

You are trying to do your best and being left to it by your acquaintance's selfish family and they are simply taking advantage of you. Only you can get yourself out of it, by agreeing to do a certain amount (if you wish), but by making it clear that this is not your job, or your calling, or most of all, your responsibility, and that you are now at the end of your tether.

If you can bring yourself to make that plain, others will step into the vacuum you leave as you step away. You have simply become a convenience to others, but maybe it is now time to think of yourself more, without factoring in any guilt that you will naturally feel at taking a backward step, in the care of someone who has come to rely on you heavily.

It may sound harsh, but sometimes making a stand is the only way to make others take the responsibility they should have taken long ago.

I wish you well in finding a solution, and a way forward that will leave you with less worry and stress, which shouldn't have been placed on your shoulders to begin with.

Best wishes, and do let us know how it all works out.

[Lucens in reply to Hidden]

thank you so much. you have got to the nub of it. but I do feel or have felt some psychological disturbance too, because on both occasions in Resus, we were there for hours, without the medics following their own protocols. it is quite possible that the outcome would have been worse if she had been alone. I had to repeatedly request action. she cannot clearly remember all the details. I cannot bring myself to make a complaint, it's all too much. and the lack of recognition from her family makes it worse somehow. she can't remember fully, and they don't want to know. so I am isolated in this memory, and yet it links me to her also. she often says that I saved her life, and leg. then she cries. and now, if I step back, then she will be totally under the power of her son, whose judgment is wonky. so I worry for her medical and general risks.

I felt quite moved reading your reply, as you have perspicacity to have discerned the situation. thank you for your support.

[Hidden]

Hi Lucens, It’s easy to see your real concern for another person and it’s also very moving. It’s not always easy to step back when you care that much, but at least do try to always consider your own health and well-being too, so that you don’t become a victim of your own kindness.

Part of belonging to this group is to lend an understanding ear so even if you only want to use it to let off some steam, please do. Many of us do, from time to time, and that’s therapeutic in its own right. So again, best wishes and please do come back from time to time and let us know how you are doing.

[sassy59]

Hello Lucens and welcome, what an intolerable situation you find yourself in just by trying to do your very best for an acquaintance.

It sounds as if the son has mental health issues and needs careful handling. His mother is clearly in awe of her son but probably is trying to keep him on side. The whole family need a shake up and need to be much more proactive in caring for their relative.

Please step back and at the risk of the lady’s anger try and get social services involved. It’s not easy but you do need to put yourself first now.

I wish you well. Xxxxx

[lell1]

Hi Lucens

May again sound harsh, apologies as I don't want to upset you. You are making a really tough situation tougher by making excuses. As Callendersgal says, none of this is your responsibility and you are inviting the intimidation by the son by sticking up for your own choices? Unfortunately, we are not all caring and compassionate people. But on the other hand, each family deals with things in their own way. It may be that there is bullying, but you have to be really careful about knowing if it is, or if it is the way that they deal with stuff? I was once told, years ago, that to 'try' to do something, e.g. move away from a situation, is giving yourself permission to not succeed in something you find difficult?

If the care worker/s has concerns that she is at risk, it is their professional responsibility to report the issue. And this is how the other professionals would get involved. You do not need to be involved. Do you have someone that you can talk with, to look at it from a different perspective maybe?

[Lucens in reply to lell1]

perhaps I have not explained it clearly, it is complicated, but I don't feel that you understand the concept of a moral dilemma. there are differing aspects which have to be held in tension, in a precarious balance. it is not clear that for the whole caboodle to come crashing down, leading to the alienation of me and the excellent careworker, and raising the wrath of her son, would be advantageous to the client. I am not inhibited by fearing her anger, but by fearing for her health, which would also be adversely affected by dragging in officials. the contact we have had with them has not exactly imbued confidence. some are good, but it very patchy and random. most, under pressure themselves, cuts, do the bare minimum, in a box-ticking way.

I agree families deal with things in their own way, but when there is a medical situation, it is different than deciding eg, where to live, how to arrange the house, how to spend money, where/ if go on holiday.

thank you for taking the trouble to reply.

[Lynd]

As I said in your other post Social Services needs to be informed about the sons actions. Is the carer through an agency or privately employed?

If she had anything about her she would have reported it by now.

No Moral Dilemma here I am afraid.

You have an elderly person exposed to abuse from what you have said. Abuse is not only hitting someone. It takes many forms.

I truly understand what you are saying but you need to protect yourself too.

[Lucens in reply to Lynd]

you are entitled to your opinion.

knowing the whole situation, I do not share it, esp paragraphs 2 and 3.

the assumption that the client's situation would improve by reporting it is not made out.

I maintain the moral dilemma analysis.

[Jacki66 in reply to Lucens]

I agree with you Lucens.

[Lucens in reply to Jacki66]

thank you. I feel I have some almost-pals here, which is nice.

[Jacki66 in reply to Lucens]

I feel the same sometimes. Biting, mostly uneducated remarks from bad tempered individuals. Hang in there, some of us are nice.

[Lucens in reply to Jacki66]

thank you, I appreciate your support. am very tired, as had to be up and out very early mon for hosp appt, and again yesterday, over 8 hours, including 3 hr in one clinic. but if I didn't go with her no one else would. coming back took a long time, dropping off other people. anyway, I suppose that;s such intellectualisation avoidance, vide infra.

how are you n yours, are you still roaming in the gloaming...

best wishes.

[lell1 in reply to Lucens]

Intellectualisation is a good hiding strategy...for a while

[lell1]

Woah!

[tobby1428]

hello lucens,you are a friend worth having! however there is an expression enough is enough and I feel that this refers to you.making hard decisions is very hard no matter where,why or how they are,you have your own life to live.sometimes decisions we make will haunt us for the rest of our lives I know because I had to make one 23 years ago when I disowned my own mother.i had been seriously ill in hospital and I thought my mother was looking after my wife and 2 small children when in fact she was doing the opposite,i still love my mother but do not like her so we remain forever parted and I say GOOD.i have been married to my wife for 45 years and I only lived at my mothers house for 17 years that speaks volumes! I think the time has come for you to let go of some of what you perceive to be your obligations and let her family step up to the breach and do their bit,she is after all their mother.i know it sounds hyper critical as to what I have said and written but you are being used! and it is wrong,if the family cannot cope then it would be safer for the mother to be in care where hopefully she would be well looked after and not being left in her own mess for hours at a time.she would still have you and maybe some new friends and maybe she might realise how shallow her family really are.you have and continue to be a really good friend but you have your own life lucens and I really do feel that your friends family are taking you for granted I know they are not showing this,but their absence speaks volumes.i wish everyone had a friend like you! I think you have some deep thinking ahead and maybe some harder decisions.god bless and I really hope things get better.

[Lucens in reply to tobby1428]

hello tobby, thank you for your thoughts. I take your point about standing back, and I have begun to do that, as I did feel taken for granted, by her family, nhs etc, and by her. She asks me to attend when her wounds are dressed, to assist nurse and support her as it is painful. this is a frequent event. after one occasion I commented that I had not yet eaten/drunk anything that day, as I was just about to when she called me. by then it was gone 2.30pm. perhaps I was meaning that unless it was something urgent, I would like to go home to eat. she just airily said, you never eat breakfast anyway. I was quite taken aback. felt as if it didn't matter, I didn't matter, my welfare. I told her this later. she said I took it the wrong way. she often accuses me of wrong interpretation when I try to tell her my feelings/ experiences, ie denying me my lived reality.

anyway, I have stood back, don't do shopping anymore, and only go over when nurse comes or the careworker begs me to.

I do feel that I still have to go to hosp appts as if I did not, nobody would. last year I suggested maybe her son might like to go, so that he could discuss with the doctor, as he was always telling her that she should stop taking all tablets. she put this to him but in the event he sent his aunt instead. she also bosses her around and she'd rather have been alone. so I went back to accompanying her.

since then her health is much worse, and I have to advocate for her, explain things to docs, as so many depts. are involved and they don't have an overview.

there was a suggestion of going into a care home for a week but when they found out how much it cost her family were not keen. also I have concerns re the standard of care. and district nurses have said that they do not visit care homes, it is expected that their own staff do the dressings. that would not be wise. even while in hosp they were often done incompetently, they did not refer to the specialists.

I think her family bullies her, and she in turn bullies me sometimes. it is a toxic way of relating. I feel hurt and used, that she has not stood up for me re her son, who I know is saying things against me. but I guess it is natural she will favour her son. and he is very over-bearing.

so why am I putting myself out, if even she does not appreciate it. I told her I do not feel respected properly. she says that's my interpretation.

I have an image of a cruise liner coming in to dock and a small vessel getting crushed between, like what happened at Venice. I am the small vessel, crushed between her and her family, slowly but inexorably. I get quite depressed at times.

when she alludes to how close a call she had, twice, she cries, and says I saved her life, and that is a bond between us. and I want to keep her alive. it would be such a waste after all she's been through this year.

thank you tobby for your kindness in replying. I am touched. I will read your other posts to try to understand your situation.

is it poss to send private messages. all the best. keep a stout heart.

[tobby1428]

THANK YOU SO MUCH !