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Finding it stressful - Carers UK Forum

Finding it stressful

Share information, support and advice on all aspects of caring.
Hi everyone,

I have ended up an 'accidental' carer for a housebound retired friend I've known for 25 years. She has grown increasingly frail and less mobile over time which has accelerated after she broke her hip and a bone in her back in the last couple of years, plus she contracted Covid-19 on the ward. She has been classed disabled from birth due to muscle weakness along one side but has worked most of her adult life until early retirement. I don't think she has any major cognitive issues.

What originally started as picking up a few things for her from the shops and running errands has now transformed into my being a spare key holder and the primary contact during her hospital stays and with the carers, social worker, food delivery service etc when she's at home, responsible for her shopping, paying some of her bills. She may be depressed (she's refused medication) but what I am more worried about is that her very strong and variable personality of the past has now so entrenched that caring for her is extremely hard.

One of my partner's first impression of meeting her for the first time perhaps 5 years ago was that she was devious. My partner felt that she manipulated the conversation, dropping hints that required us to say 'that's terrible, what can we do about it to fix it for you' and also saying very provocative things to provoke a reaction, what my partner calls 'dropping bombs' - "why is she trying to get these reactions, she's at it, I don't believe a lot of what she says, she exaggerates". My partner refuses to visit her on her own 'because she's just too much hard work, too difficult to talk to'.

The difficulty is that she has become reliant on me and another friend who has now largely bailed out because he finds it draining to deal with her. He says when he runs errands for his friends that are shielding, they will say 'Can you fetch me a pint of milk' but he finds her tricky, evasive, dishonest, disingenuous, secretive or she will refuse to engage (that's my experience, too). I have overheard her being extremely rude to carers that visited and it's always been a worry of his that she would stop or resist their service.

He is not aware that social services opened up a welfare/protection investigation when he accidentally bruised her during helping her with her physio exercises. The Nurse told me that she came across in the investigation how a victim of abuse would and it was being taken very seriously. My friend made out that they (SW and Police) were forcing her to say things, taking her down a path that she didn't agree with and she worried it would affect their friendship.

She has always been very disrespectful about him, too (they have a personality clash, he won't take any her nonsense, says that he's told her that the way she treats people can make it very hard for them to relate to her and says he's pushed back on her manipulative side). I even wondered if she threw him under the bus but then I got angry with myself for having such paranoid thoughts.

She will literally just ignore questions and blank us, come up with the weirdest of excuses "I don't want to go to a care home. I don't like bingo. They will make me play bingo". We also find that she falsely presents our conversations we have with her to others.

We appreciate when she is low in energy or spirits, she will naturally be less chatty but it is like she selects when to be mute and she seems to have a way of agreeing with what is said without actually then taking any action, not the slightest.

She refuses to make even the simplest of decisions - we are talking about the type of bread she might like or if she would prefer tea or coffee and she might say 'you choose' or 'I don't mind' or just not answer. Serious decisions about whether she should move into a care home, for example, are presented as joint decisions by her "Well you both tell me I should move into a care home so I thought we would be deciding?".

She refuses to accept any responsibility for her well-being and the simplest suggestion of change can make her defiant or very anxious to the point of meltdown.

If she looks uncomfortable in a chair, she will refuse cushions, when she struggled with a kettle she rejected a device that would help her to pour. She has refused to consider a microwave for her food to be heated by her local authority carers. She knows its hard for us to manually pay bills but has refused to go on direct debits despite barely being able to sign a cheque or operate a cash card. Her regular chiropractor moved away but she refused to let us find another. It's always on her terms - she appears to accept the arguments we make but then comes up with excuses or won't do anything or has a meltdown when we follow it up.

She resorts to emotional blackmail, conflating friendship with caring "I hope you won't end our friendship". When I told her the dates of my holiday she says things like "You deserve a break from me." The social worker has said that she has emphasised to her that she needs to maintain her friendships without burdening others but the social worker has also said that she can only really remain in her flat if her friends support her.

So I'm finding I am extraordinarily stressed out at how complicated she is to deal with and how much treading on eggshells I am forced to do. I never know which friend I will get - the rude one, the anxious one, the silent one, the needy one, the passive and docile one, the twinkly eyed teaser, the bitter one, the angry one, the withdrawn one. When I came across a description of some of the personality disorders, including the ones related to dependency and borderline, I can tick many of the boxes.

My partner said to me the other night "You know we talk about her more than our own families" because of my need to unload after virtually every encounter with her.

I'm sorry its such a long message. I work full time, do voluntary work and studies on top, I live 6 miles away and it's getting on top of me. When I tell people of some of my experiences, they just say she sounds a nightmare, to walk away as she's not my responsibility but then I visit her and see that she's not coping and it's just not that easy. I'm just all over the place.
Joanne, this is no friend. You don't have to visit, to walk on egg shells.
Why do you feel you "HAVE TO"?
Only you can change the situation.
How does she contact you? When and why do you visit? Try not visiting for a week,concentrating on yourself only, doing things you love that you haven't had time for? Normally I'd recommend counselling, but under the current circumstances, that may not be possible. I found it liberating when I felt hopelessly trapped.
I feel that I 'have to' because she is a long-term friend who has a limited number of friends and no relatives in the area. She is very infirm and can only walk a few yards with a mobility aid and hasn't been out of her flat since December. She has weak and shaky hands - cannot make herself a cup of tea, open a tin of soup and heat it on the stove, open food packets and so forth. She struggles to use her phone and write notes.

For me, it's about loyalty, positive values, friendship and wanting to do the right thing. She is very vulnerable. In the last couple of months she's had incidents of falling, being stuck on the loo, being stuck in bed due to a bad back, unable to get to the door to receive her hot food delivery.

She is now getting the maximum social care that she is entitled to in terms of x4 paid carers visits per day and a hot food delivery service but as many forum members know, that's just the minimum to keep her alive. There has been a cycle of admissions to hospital (around 4 since Christmas) where she is discharged back to her flat and gets depressed and moody, perhaps because of her loss of mobility and isolation.

It is horrible to witness the poor quality of her life and impossible not want to do something to help her. That's despite the fact that she rejects all changes, advice and guidance that could help and support her.

I try to resist her cues and hints to do more but just feel terrible, even when I know she is explicitly behaving or saying things in a way to elicit this. I feel guilty even though I know that ever since I've known her, she's been own worst enemy in terms of preferring to suffer rather than take any action, plus her volatile behaviour that swings from passive to aggressive, apathetic to assertive.

I think she wants to stay in her flat with everything the same even though its bad for her. She is on a mission to achieve this by encouraging the small circle around her that believe that being a friend is being a carer for her though she would never use those words.

I'm aware that I am not very assertive, by contrast and just tend to try to please - I've noticed this at work and with my voluntary job where I've ended up taking more responsibilities on and the less popular tasks, subject to disrespectful behaviour by a couple of toxic colleagues but not doing anything about it. Now I'm stressed at work and its coincided with her being at her most neediest and vulnerable. So I think I will need to look into some kind of therapy that will make me a bit more resilient, less sensitive.

I came across Psychology articles that indicates that she may have an anxious and dependent personality that means she latches onto people and makes them care for her, take her decisions and let others take on her responsibilities. According to the theory behind a 'dependent personality' she will likely respond to my trying to reduce the support I give her by becoming extra needy and submissive, quickly find another replacement person who can take care of her, test my friendship.

I noticed a lot more about the way she changes her behaviour to achieve what she wants. For example, when I handed back the flat keys to her because I am away a lot over the next 2 months, she said some emotional things to evoke sympathy, looked teary and was effusive in praising me for everything that I've done to date so I ended up feeling guilty. I expected her to test me on this and she did. It took a lot of steeling and encouragement by my partner to hand back her keys. I nearly lost my nerve, too, when I did this because of the shock and upset on her face.

I calculated that her refusal to put her finances on direct debit meant that when she was last in hospital, it took the 3 of us 10 person hours to pay her household bills and her cheque book travelled 20-30 miles from to her flat to hospital and back.

Earlier this year, in a prior hospital admission, I did explain how much effort it takes to take care of her finances, and particularly in lock-down and the risks to others doing this activity, but she would not cooperate when she was discharged (despite apparently accepting all the benefits to her and us). Her current position on managing her finances is "The social worker has told me I must put everything on direct debit so I suppose I must" which is not really much progress. Her current position on letting hot food delivery service know the key lock code so they can let themselves into the flat with her meal ( she can't get to the door in time) is "Well, I'm not happy to share the code but perhaps I may have to."

Typically, she will make noises that appear to consent to something and then will simply not follow up with any actions so its hard to be optimistic that she will do anything to progress these 3 things. Or perhaps she now knows she has no choice because myself, the other carer and the social worker are unanimous that she has to reduce her dependency on others.

Sorry for another long post - I find getting it out quite cathartic. I've had many broken nights sleep over my relationship with her. I am currently on sick leave from my work relating to stress/anxiety over workload and management issues.
To be brutally honest reading through your posts your friend sounds like a very nasty person, volatile behaviour, being rude to carers, devious, manipulative, emotional blackmail.

It is difficult enough caring but putting up with all the above, just impossible, even a saint or mother Terasa wouldn't put up with all this.
And what do you get out of this "friendship", many nights of broken sleep.

Friends help each other, are nice to each other, support each other, provide a shoulder to cry on, what support is your friend/friendship giving you.

It is good to be a friend, help some one temporarily when they are going through a bad patch but this bad patch can and will go on for months/years.

One of the unpaid carers i know suffered this behaviour above for years, emotional blackmail, bitchiness, being snapped at, she took an overdose in the end, very emotionally damaged, will never care again and has needed and is getting months and months of counselling to come terms with this.
She is needing care instead of being a carer.

Its not your responsibility to do all this, its just not, it's up to the Social Workers to sort out everything, they get paid a lot of money and are responsible for your friend.

And your friend has carers to deal with her needs, they should be doing all the "other jobs" and proper emergency care should be provided for the falls and being stuck on the loo.

Your friend needs full time/care full time support and again thats not your job, you live 6 miles away using fuel to see her and she treats you badly.

I too looked after my friend for years, again doing everything for years, bills, shopping, main key holder, primary contact when in hospital and it just exhausted me and damaged my health similar to yours, many nights of broken sleep.
She is a friend but the way she is treating you is not a friend, she should be nice, grateful that you are helping, trying her best to manage her moods, getting treatment for her depression, she is being stubborn and awkward.

And to be honest the social services are taking advantage using friends to provide the care and they should be providing unpaid carer support and acknowledging how difficult it is for you.

You have the right to have a life of your own, see your friend, have a chat and a cup of tea, but you shouldn't be subject to emotional abuse and continuous demands for help.

Look up co-dependency on the internet, its where you have low self esteem and feel the need to help needy people with difficulty's, try in a way to rescue them.
Joanne

It seriously is time you put yourself first.

You have started that by handing back the flat keys.

People pleasing is not doing you any favours in the long-term.

I know because I used to be a people pleaser myself

You could do with being a little more assertive at work too

I am sure there are lots of articles on line about assertiveness/people pleasing and boundaries.

You are obviously very caring, but that can be taken too far

Try looking after your own needs first.

It is essential for your emotional and physical health.
Thanks for all the support. I feel much better for unloading all the pressure that I'm under. I definitely appreciate the advice.

I will be making further changes that are better for me and try not to feel selfish about it. Because the scales have fallen from my eyes somewhat and I have identified the impact that our relationship has had on my health and spirits, I think this will motivate me to be firmer.

I do want to remain friends and visit her regularly - I have known her for a long time. These social visits are going to be tough because she won't be happy at the limited boundaries. I predict some awkward visits. Now I remember a couple of my friends that I bought along to our social visits out in town when she was mobile and how they declined any further invites to join us.

Even though she has a very vocal critical/negative streak, she's never been abusive to me. We have witnessed her being rude to the other carer, about her sister, to a paid carer, to a shopper that she thought had jumped the queue.

I didn't mean to imply that I had directly assisted when she had fallen (she got up herself) or got stranded on the loo (I think the next carer got her up and then the Occupational Health made some changes).

When it came to her being stuck in her bed due to a bad back, the carers notified me that they couldn't have someone stay to let the GP in (and the GP then asked me to wait until the ambulance came). That lost me most of a day of work during a really busy period and while my work were good about it, I don't want to go through it again.

I am not in the position to dispute the physical cause of her not being able to get out of bed (she has suffered back issues and did seem to be in pain). However the other carer wonders if there was anything really wrong with her, he thinks she may have just 'given up' because she was overwhelmed.

In the past, she's called out an ambulance believing she's had a stroke because she can't walk. I thought at the time that it was her way of coping with/denying that her reduction in mobility was a natural thing so she found a reason to blame it on. I think she was diagnosed with dehydration so she would have been weak and may have panicked.

These issues have not made her consider moving to a more suitable property - no wake up call at all.

I feel that the other carer and I have enabled her to get her way to continue living in her existing home to the detriment of her (and on us). I can truly understand why someone would prefer to continue living in their own home and I know how averse she is to making decisions and taking action. I also know that as she has mental capability, her preferences must be taken into account. She said the first doctor during her last hospital admission said she needed a care home because she couldn't cope at home and she felt he was being premature. Somehow the next doctor said she was fine to go home with visits from carers.

When she moved flats a few years ago, she would not look into a removals service and dropped really big hints for those around her to pack and shift her belongings - she even told us that a couple of lads she met in a cafe (not sure if they were diners or staff) said they would help her on the day. We were alarmed that she had found a couple of strangers that were willing to do this for someone they'd barely met. Closer to the time, she was in a panic because they hadn't got in touch and the pressure was piled onto us. It was only my partner forcing me to ignore the signals that stopped me from undertaking a flat move for her at the last minute. I think this is a sign that she really doesn't want to deal with things herself and doesn't like using proper services. I think also this experience has put her off moving to more suitable accommodation - she has repeatedly said that moving is a 'hassle'.
Can I play Devils Advocate, You started the post saying you were an "accidental carer" asking for help.

Since your first post, you seem to be, not only a primary carer, but also full time door stop for your friend????

How is work going, and family life since you made this decision?

You should claim Carers Allowance if you are going in head first, Good luck..
Thanks all. I've taken a long holiday from work. My boss has noticed the team dynamic and is going to make some changes. The organisation that I volunteer for is letting me have a leave of absence. I've managed to decompress.

A relative of my friend has informed me that as a younger lady, she was discharged from hospital after 6 months for 'hysterical paralysis'. This is now known as Conversion Disorder or Functional Neurological Disorder. It's not feigning or malingering at all but there is no biological or physical basis for the persons symptoms which can include blindness, deafness, seizures and paralysis. It's about converting psychological distress to the body, the brains signals being tricked or interrupted.

I wasn't aware of her psychiatric history. I looked into it and many sufferers also have other mental health conditions like depression, anxiety or personality disorders. There's no conscious motivation but the person benefits from being released from their responsibilities, enjoys the attention given due to their sick role and being treated as an invalid.

Her relative told me that since childhood, my friend has a history of 'playing games' and becoming hysterical when things don't go her way or she feels she isn't getting enough attention.

So while I have to take it with a pinch of salt, as my friend and her relative don't get on so there could be an agenda there, it's been sobering.

My friend is now back in hospital undergoing tests. She did not answer any health or medical questions that myself, her carers and the NHS nurses asked her about her pain or symptoms.
Thank goodness you met this relative!
I have a sneaky suspicion though that the relative was pleased you were doing things that she should have been doing but didn't want to!!
I'm sorry though for your time that she has taken from you, while you were being so kind to her.

Any care she needs from now on must be met by someone else, in fact it's probably always been available free for her, in view of her medical history!!
This relative is very unwell and lives far away. She seems to be a bit guilty that she's not able to support my friend and not the least but surprised that she's in hospital again and is being non verbal. She has looked into care homes for her but that was never going to be welcomed by my friend.

From her point of view, my friend sabotaged her opportunity to have a skin graft. My friend was supposed to donate skin to her but became hysterical at every appointment so the operation was cancelled. Obviously, to me, it sounds like something that would make a person nervous. From her perspective, it was about being punished for getting attention for an illness/injury that my friend became jealous about.

I've spoken to my friends relative many times and this is the first time she has given examples of why she considers her awkward to deal with. It's the first time she has explicitly said that she believes my friend engineers baseless reasons to have hospital admissions.