Finding it stressful

All about caring
1

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.

2

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.

3

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.

4

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.

5

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.

6

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’.

7

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…

8

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.

9

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!!

10

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.

11

My friend has been in hospital for nearly a week and has been diagnosed with ‘another’ urinary infection and is on fluids.

I say ‘another’ because I wasn’t aware that she had one previously. She either was too embarrassed to tell me before or its part of the control and secrecy she demonstrates and the way she downplays her ill health.

She was recently in hospital for a bad back and a welfare investigation for over a month but would not talk to me about her test results or diagnosis.

I was away for 2 weeks. It appears she isn’t showering. She’s not really eating, either. I did a grocery shop for her before I left and most of it was untouched. She has a hot meal delivery service and we found 4 meals completely untouched.

She has 2 carers per day and a cleaner and it’s not been enough to meet her basic hygiene and nutrition needs.

There is a local covid lockdown so I am unable to visit her in hospital. The social worker is considering discharging her into interim care, a month in a care home, rather than sending her home. This is the best option considering she’s had 5 admissions to hospital since Xmas.

The other person who helps occasionally thinks that will persuade her that she may enjoy being in supported housing but I’m not optimistic. He gave up visiting her on a daily basis because she is awkward to deal with and when he had a break from her during her last admission, he realised what an impact she has on him.

I think as soon as her energy returns, she will campaign to come home and pursuade the social worker that she can manage. We will see.

12

Keep telling yourself she is NOT your responsibility.

13

Things continue to become easier for me. My line manager has given me lighter duties and one of my toxic and unstable colleagues is leaving.

My friend has been in hospital for 2 weeks and no general visiting is allowed so my duties have reduced to phoning her on a daily basis and dropping things off to her. That’s reduced the pressure.

The carer that found her unwell was expecting me to come that night and wait up to 4 hours for the medical services. I explained that I wasn’t her carer and had just got back home after a long flight and had work in the morning. I felt very unpleasant and guilty for having to turn down going to her flat late at night to do this.

I’m now in the habit of answering her questions and requests (usually hints) to do things for her, such as pay her bills and fetch things from her flat by saying ‘You need to speak to your social worker about this. She works for you. You have to tell her what you need’ or ‘you will need to wait for that. As you know, I work 9-5 and that drop-off desk at your hospital is only open in the afternoons. I need to get permission from my boss to take time off to do this for you’

For example, she repeatedly raised anxieties about how her next lot of bills would be paid as she prefers to pay by cheque, has refused to put them on direct debit, and she cannot have visitors to the ward. Every time she raised the issue of her forthcoming bill payments, I told her to speak to her social worker about her finances.

I remind her that she has been asked on multiple occasions by her friends and social workers over the last year to stop her reliance on manual payments because it is too time consuming for those involved and just causes her worry when she’s on a hospital ward (5 admissions so far since Xmas). I told her that she was urged by social worker to address this the last time she was discharged. She did fill in one direct debit form for a minor bill but then it was found she’d put it in a bag rather than post it. She blanks me when I raise direct debits with her. In the end, she got her social worker and another friend to pick up her bills and cheque book from the ward, write them out and leave them on the ward for her to sign them. At least this time, I didn’t lose 5 hours of my time doing her bill payments for her due to the travel time involved in moving between her flat, the ward, my house and the post office queues.

She has been offered either 4-6 weeks intermediate care before returning to her flat or a permanent place in a care home and has been given 5 days by the social worker to make her mind up. I have indicated previously how anxious she is and how she is completely averse to making any decisions, even minor, taking any action or responsibility for her well-being. Getting her to choose groceries or toiletries for a shopping trip is a nightmare due to her indecision and habit of blanking. This decision is causing her massive worry as she can’t get out of it in her usual manner by paying lip-service and then sitting on her hands and doing nothing.

All I’ve been doing is encouraging her to consider the pros and cons of each proposal to determine what’s best for her. I don’t want to influence her decision. In reality, she won’t be able to cope back in her flat but there’s still some part of her that thinks she’s going to get her mobility and strength back - she is blaming having trouble walking with not being able to exercise much on the ward and not having much physio. She feels going back to her flat will improve her mobility as she can walk around much more whereas she feels the Nurses stop her from walking on the ward.

She’s convinced herself that if she moves into care permanently, she will never be able to leave the building. That’s despite being repeatedly told about being able to come out for day trips and to speak to her social worker about this concern rather than just assume she won’t get over the threshold. I know that once she’s come up with a lame excuse, there’s no budging. So I expect she will ask for temporary care and then go back to being trapped in her flat.

Her mis-remembering and mis-representation of conversations still continues but now my spirits and energy is restored, these things bounce better off me. For example, last weekend, my friend was very distressed at being asked to choose between temporary or permanent care. In particular, she had got it into her head that her Housing Association would evict her and throw out all her belongings if she went into temporary care. The Nurse and I were at pains to reassure her that it isn’t the case, she has a secure tenancy and being an NHS patient doesn’t void her contract with them. There were 3 or 4 other concerns and notions that she had that wound her up to the point of meltdown. She was so distressed, the Nurse asked me to speak to the social worker on Monday which I did. It transpired that the social worker had addressed every single one of the worries that she was fretting about on the Friday whereas my friend gave me the impression the social worker had only given her a bare outline without any detail about how this would operate.

I don’t know if this is wilful on her part, engineered to make people give her attention and sympathy, or because she is so anxious that she is beyond reassurance and needs to be told a number of times to believe it or she is forgetful. But it seemed the two of us were hand-holding her about issues that were already raised and responded to by the social worker very recently. It did seem to cause her genuine distress though but she just couldn’t be calmed by the Nurse or I.

Very recently, my friend panicked about how she would pay for either option. I was unusually firm with her. “Last weekend, you listed a number of worries but when I spoke to the social worker on Monday, she had actually discussed all of them with you. She had given you all the information about how they would operate and she had told you that you would not lose your flat. I am certain that she would have discussed the finances involved. Can you remember anything she said about this? Are you saying you have forgotten what she told you on this matter”. Then she responded by saying “Intermediate care is free for me because its an NHS bed. The care home will be paid for me by the local authority.” !?

So the trickiness and exhausting anxiety continues but she is now having to confront her infirmity that she has played down and denied because going back to her flat directly to stew in an armchair all day is not an option. It’s a significant moment for her.

If she chooses Intermediate care in order to get back to her flat, I will have to tell her that I will be visiting her a couple of times a month socially when she’s back at home. However, perhaps if she enjoys her experience of Intermediate care, she may be more open minded about a permanent place in care in the future.

14

From what you say, she could at the beginning of dementia, genuinely unable to retain information for long. I knew someone just like that long ago, but it takes a long time to show itself properly.

Well done for side stepping pleas for help. It’s up to the hospital and social workers now.

15

Quite rare but your friend could be suffering from multiple personality disorder, so the person in times of stress actually has different personality’s.

Its also called dissociative identity disorder, in times of stress, the person has different identity’s.

So on one day you talking to personality A and everything sorted.

But the Next day Personality B doesn’t know anything about the previous conservation because in effect you have talked to a different person.

This could explain the issues you are having, has your friend ever been properly assessed and diagnosed by Mental health services?
just a possibility, can you discuss this with the hospital or the social worker.

Sorry looking back at your posts and “Functional Neurological Disorder” yes that includes dissociation very similar to above.
I think there are different names for the symptoms but it causes the same issues.

Your friend needs co ordinated help and support from the hospital as well as the input from social services.
You can look up DID and FND on the internet, MIND is a good source of info and there are a few websites on FND, these can be caused by abuse or a bad childhood, or a traumatic situation, the body reacts to this trauma.

And you too need help and support as an unpaid carer.

16

Recently, my friend was diagnosed by a hospital psychologist or psychiatrist as having depression. This was instigated via the GP by the Social Worker perhaps because of her experience of dealing with her and/or the reports the other informal carer and I gave about how withdrawn, uncommunicative and anxious she could be. She refused the offer of medication.

The other informal carer and I didn’t discount that our friend has a mental health condition such as depression and she definitely can be very anxious. What we thought may have happened is that during her initial meetings with the social worker, she would have been very wary about talking about her needs and giving opinions on what she wanted, very unwilling to do so. At that time, she was really controlling her narrative and being particularly difficult to speak with.

She has hinted and vaguely touched on people helping her in the past when she was down, saying they would visit her but did not elaborate at all - it is fairly common for her to partially reveal something and be a bit secretive, tell one person one aspect, tell another person a different part of it or contradict it completely. The other informal carer said our friend was shocked when she found out we were in contact with each other as previously, we’d had no contact at all but started to communicate together to support her. This is when we started to identify patterns and contradictions in what she was telling each of us because we would compare notes.

I am not in the position to know of any historic formal mental health diagnosis. I would never ask and talking to her is very difficult, even when it relates to non sensitive matters.

Yes, she has many different sides to her - at the moment, she comes across as very anxious and stressed and struggling to make a decision. I know that just around the corner is the defiant and opinionated person who will put her foot down very firmly and make it very clear what she wants and is rude to the local authority carers. Before writing became an issue for her, she would regularly send letters of complaint to her landlord, council, shops and all manner of service providers, such as taxis, trains and the like. I imagine this spikiness will come back.

Her volatility and being very unreliable in the information she gives, being a bit demanding and manipulative is what led me to do a google search where the Personality Disorders chimed with me, particularly around dependency . She is on a mission to transform those around her into being carers and personal assistants, plus the extreme refusal to take decisions and putting her responsibilities onto others, the emotional blackmail. Unfortunately, Google can turn us into poor experts so I have tried to resist this but definitely, something was pinging for me and I was reading out excerpts from Academic studies that I thought could have been written about my friend.

Again, I’m going to have to take her relative’s statement with a pinch of salt that my friend has been hospitalised in the past for a lengthy period for Hysterical Paralysis (now renamed into something a bit kinder sounding). Interestingly, despite my trying to keep away from Google, it often sits with other mental health conditions and is related to the person having a mission to be taken care of, so it fits with my experience.

I am not going to pursue any activity in this area. I assume that this kind of thing ought to be on her medical records. If she has the capacity to hood-wink and control those around her, then lets hope that the social worker and health professionals are better at knowing when they are being played.

At the moment, she is physically weak, lacks energy and is very worried about her future so I will help by listening to her woes. I did offer to be a sounding board for her to discuss the pros and cons of intermediate or permanent care but she sidestepped the topic. I can’t tell if she is expecting me to make the decision for her (sometimes she won’t even say what sandwich filling she wants) but I’m deliberately not offering any opinions, just encouraging her to think about the benefits and downsides of each proposal, and to talk to her social worker and the Nurses about her thoughts and concerns.

17

I’m definitely going to bear this in mind. I have noticed that she pauses a lot more before answering and I started to consider whether this is a cognitive thing or not. Also, there is more information now in the public domain about the mental and cognitive impact of Covid which she caught on the ward in the spring.

Part of what makes this observation so difficult is that her personality is such that we feel she prefers to think carefully about what she says before saying it because she can be very guarded. She always uhmmed and ahhhd a lot before answering.

She is very selective about what topics and which people she will engage with and that seemed to be either intentional (because she couldn’t cope with the changes in her life and did not want to be reminded about her loss of mobility and stamina), because she has little respect for the other informal carer and it’s a way to show contempt, or unconscious (avoidant behaviour to achieve an outcome that better suits her).

18

Thanks for the links. I had a good look at the Multiple Personality Disorder information and it seems quite a controversial and complicated condition and professionals dispute its validity. Like the Dependent Personality Disorder and FND, it is very hard to diagnose and can overlap with other mental health problems.

I think conditions like Personality Disorder, FND and Anxiety chimes more strongly with me to account for the extremely different ways that she presents herself and builds relationships with others. Also, her background as a less educated female with a long-term history of child illness/disability maps to the more likely demographic of that diagnosis, according to the academic studies I read.

This is a summary of what chimes with me “Dependent personality disorder (DPD) is a personality disorder that is characterized by a pervasive psychological dependence on other people. This personality disorder is a long-term condition[1] in which people depend on others to meet their emotional and physical needs…characterized by excessive fear and anxiety… Symptoms can include anything from extreme passivity, devastation or helplessness when relationships end, avoidance of responsibilities and severe submission…They cannot make a decision on their own as they need constant approval from other people… people with DPD tend to show passive and clingy behaviour. These individuals display a fear of separation and cannot stand being alone… Generally people with DPD are also pessimistic: they expect the worst out of situations or believe that the worst will happen. They tend to be more extraverted …”

As expected, my friend is going into Intermediate care for a month rather than permanently into a care home. She told me that the Social Worker decided for her because she found making the decision too difficult. My friend was extremely stressed during the 5 day period that she was given to make up her mind and was struggling with it.

Based on her previous 4 discharges back home, she will just go down-hill due to loneliness, not showering and not eating properly until she has another fall, her back or legs play up and strand her in bed, she gets her 3rd UTI or she just simply shuts down and stops responding to her carers when she gets overwhelmed. I do understand the legislation that means that a person’s wishes has to be taken into account unless they lack capacity or are a danger to themselves.

She wanted me to do her laundry again while she’s in hospital but I reminded her the collection desk at hospital is only open on the afternoons when my partner and I are at work and 3 other people that she knows are retired (the other informal carer, her cleaner and a friend who used to do loads for her pre-pandemic but seems to have withdrawn from her).

She has asked me to top-up her mobile phone. I told her when she gets out, I will help her go onto a cheap contract with unlimited calls rather than PAYG and this will save her money and she doesn’t need to worry about running out of credit or having to ask others to do it. She was agitated when she found out this would involve direct debits. When the carer and I have tried to help her to put other bills on direct debits, she’s had mini-meltdowns or she completes the mandate and doesn’t post it.

Overall, she is sounding much better. Originally, due to the UTI she was very confused for the best part of a week.

19

As an outsider, she is still like a spider constantly trying to draw you into her web, to do this or that!

20

Yes, as a lady with a long-term disability, who has faced stigma and discrimination in her childhood and by employers according to her accounts, I think she has needed to be very resourceful indeed to remain as independent as she has managed to be and overcome her physical limitations. That was even before the age related issues that have made her infirm and fragile. In a way, I definitely admire her drive and motivation to overcome her barriers.

It’s a shame that her experiences have led her to develop a very tricky and unstable personality which undoes her campaign to turn those around her, including casual acquaintances into her carers. For instance, the guy that used to go to her flat on a daily basis who helped pay her bills, undertake DIY and do her shopping was a godsend but she regarded him as a busy body and really she needed to keep him on board. I can see why they have a natural personality clash but she couldn’t see past him as pushy when he was the primary person that was propping her up.

Fortunately, he hasn’t cut her off completely but the days of having him pop into her flat each day are over - he simply found the communication battle and lack of cooperation with her too exhausting.

With regards to the laundry request, there’s probably a mundane reason that I am being gently guilt-tripped into doing it again. I don’t think she will want to give her smalls to a bloke, her cleaner she will have to pay and her other friend has perhaps deserted her (she has a long-term illness and even when lockdown restrictions eased, she never really re-appeared).

As it happens, I have a lovely teenage family friend now living very close to her current hospital (I’m 5 miles away) who would definitely volunteer to do this for her. I just need to warn her about keeping boundaries and escaping dependency by not giving out her telephone number or address. An 18 year old is no match for a 72 year old with a possible personality disorder.