Am I wrong to be annoyed?

My partner is supported for nine hours each day whilst I am at work. During this time he is taken to the gym, swimming, shopping etc. This has always worked very well, I thought. Today I was at home so I thought I would pop down to introduce myself to the support worker as it was someone I haven't met yet. I left it until the last minute as I didn't want to interfere with the days activities. When I arrived, my partner was in bed. The support worker looked sheepish, but said he had given prompts all day to no avail. My partner had wanted to stay in bed. He had not eaten all day and the gym session was missed, obviously. Monday is usually filled with shopping, gym session, physio exercises etc. The support worker said he hadn't wanted to be forceful as this could be seen as abuse, but to my mind a firm voice with a reminder of the days activities would have been enough.

Surely someone with a brain injury who has no awareness of time and little motivation should be given encouragement rather than allowed to make his own decisions as to whether he stays in bed all day. He would always opt for the latter given the choice.

Having a bit of a rant I know, am I wrong?

17 Replies

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  • It sounds like your partner does not know what's in his best interest, which is to be engaging in the therapy, even though it may seem pointless to someone with a brain injury who may think they're fine when they're not. Even if someone with an injury is capable of taking care of themselves, it's helpful to have their days structured, it reinforces good behaviour and helps them to avoid neglectfulness/developing bad habits.

    Unless your partner was unusually tired, I think the support worker should be encouraging him to participate and I agree it may have helped to have been more assertive to your partner. On the other hand it may have discouraged your partner from participating in future were he to become upset about being challenged. It's a tricky situation and it's probably best to discuss this with your partner's rehab team.

  • Thanks for your reply. We have had support workers from the same agency for six months and he has a structured plan that he follows. His brain injury means that he needs prompting for everything. He is always cooperative and very mild mannered, but if he is given the choice he will always choose to lie in bed. His short term memory loss is so severe that he wouldn't remember being challenged from one day to the next, in fact ten minutes would be pushing it!

    I have always assumed that the plan is being followed, but for me to turn up unannounced to find him tucked up and the support worker watching tv made my blood boil slightly! I am hoping that this was a one off, but being at work I have no real way of knowing. I have passed my feelings back to the agency manager, they have been so supportive and helpful up to now, but given that the "support worker" who came today is actually the agency owner I wonder where complaining will lead!

  • I totally agree with you, you are not wrong to expect the support worker to strongly encourage your partner in their daily activities. I had a similar difficulty when I discovered that my husband was not doing any exercises, the physio when questioned said "she had told him what he needed to do & he seemed to understand perfectly", despite the fact he had a brain injury & difficulty remembering what he had had for his last meal. She didn't feel it was appropriate to inform me of the exercises or write them down for him. I was not impressed & spoke to her team leader and insisted that something be done to ensure he did his exercises as this was needed for all sorts of reasons. It was left to me again to find a solution & implement it.

    Its no good you thinking things are happening when they actually are not. My husband would also stay in bed unless he was strongly encouraged, its the easy option for them but does not contribute to their long term improvement. I tend to know when my husband needs to stay in bed because he has overdone it - the support workers did not know him well enough.

    can I suggest you speak to your partners key worker good luck.

  • Thanks for your reply. I was going to write a separate response to the one I gave above, but it would say pretty much the same thing. I was just astonished that he was allowed to sleep all day when he has such a structured plan to follow. I'm still cross! Perhaps I should calm down before I rant to people but to me the whole point of support workers is to enable the people they support to live a normal life.

  • If want to know what's going on at home, you could try recording it with a smartphone time-lapse app. There are some relatively cheap Android machines available that would do the job.

  • Do they have a log that they fill it? My mum had home care for several weeks and they kept a log which stated when she had declined things she was supposed to do, and what food she had decided to eat. She was also quite abusive to them (my brother caught her in the act) although they had been too nice to say.

    Was this a one off when the owner was covering for a day and didn't know the drill? Do the staff understand how it is with brain injury? That your get up and go has got up and gone? That a good routine and getting into a good sleep pattern really helps?

    I would have a chat with the care boss, it might have been a one off, or they might need to know that he has to stick to his routine most of the time. If they need staff training on looking after people with head injuries they could contact Headway.

  • Hi,it seems that you can find some changes in the routine of your partner when cared by a support worker.It`s something that happens each time this support worker come to visit your partner or happened just for one time?It could be that your partner having a new person to take care about his activities is something challenging at the beginning, so maybe feeling unsettled because wants to know more about who`s taking care during activities.I think we cannot judge a support worker for one episode, but if there is a recurrence of the same behaviour , maybe is better to investigate more, but obviously you`ve to ask a line manager about it and describing your experience and maybe finding out what was wrong.I think we cannot say that a support worker is guilty for not doing his job, sometimes we have lots of expectations on people without valuing the situation in reality and it fit more what we like to see for our loved one rather than what it is in reality.Are you sure that for that day your partner was feeling ok with the environment and eventually with what has been organized to do?As you`ve said, you spend your time out of home for working, so you`re not aware what your partner is doing during the day and you was happy by knowing that in some ways was doing something pleasurable before, so this kind of not doing anything at all seems unacceptable for you, try to know why there is this change, but if it was for one time,maybe cannot be valued as so bad after all.Take care

  • Unless they are specifically trained asto how to approach people with head injuries we go around the fine line of ,if we force them it's against their rights or if we force them it's against the rules and could be classed as abuse. We had that with my father in law, although he had dementia, he had not bathed for so long his skin had a crust on his back when we became aware. He would wash but not shower or bath.

    It made me very angry that they would do this but it's due to so many cases of carer abuse cases apparently.

    I think you need to ensure that they have someone who is able to be firm with your husband.

  • Ha - this is SOOO familiar!! I think a lot of it is to do with poor training and supervision from the agency. The SW doesn't get how different the injured brain is and is frightened to push.

    We've gone the direct employment route and have a simple a4 page per day diary which works brilliantly. We use it to; record the days activities, track fatigue and keep each up the team informed as to what has been done / difficult / achieved / learned.

    There is clear expectation that the detailed weekly plan be followed and we have a team get together every eight weeks to ensure everyone is working consistently, share thoughts and ideas and give all a chance to get advice on managing the challenging stuff.

    We also had a team education session with a neuropsych to make sure they all understood Jake's specific injuries and needs, i.e. The bit of his brain that initiates is broken; your role is to enable this as he can't. That means learning how to encourage him out of bed and engage him in his activities...not leave him in bed all day! (Yes, we had EXACTLY the same issue).

    It's a tricky one and all boils down to getting the right, dedicated SW team and giving them the right training and support. A lot easier said than done!

    Good luck, you are not alone :)

    Charlie x

  • Charlie get response no you are not wrong to be cross it's not good enough. another agency or direct employment? My friend is a carer and mainly works for one client but recently started doing agency work - told me hair raising stories. She is highly responsible and caring and organised both the agency and many coworkers are not. Direct employment would give more control and consistency but may be too difficult for you. Sorry it's such a battle but keep strong.

  • if I was being looked after and I was having a bad day my brain shuts down I am tiered I to would say leave me be and if I was encouraged I would get frustrated which may come across as anger. so from a patients point of view if I am on a NO GO then no one would budge me.no go does not mean a lazy day it mean your body cannot function and needs complete cut off.

    From a support works point of view. There are so many rules and regs to do with care and you cannot ask to do something against there wishes to do something they do not want to do. You can encourage but if the client sounds frustrated by your good intentions you don't continue. One day is ok but if this was a regular thing then something is wrong and the client would need assessing perhaps by consultant not a nurse perhaps. This is a hard one as I have been all of the above!. I can see it from all sides. But if my partner was being cared for by another and I was paying them , I would be very protective and would want my monies worth . I would also would want to do everything to make them better so by them missing physio I would feel like I had failed them. guess the question is who is in the driving seat? the carers or the patient? you can't make a chicken fly .We BI SURVIVERS do want to get better but will try harder when we are having a better day. xx

  • Sounds like he had a lazy support worker that day who just wanted an easy shift. You should complain to the company and request this person does not support your husband again. I am a support worker for adults with learning difficulties and often have to be firm with our service users and encourage them. If they point blank refuse though there is nothing we can do.

  • Hi Jane. I too would be furious if it were my partner who's care was being neglected. When you believe you've done everything to ensure he has the best possible care this is unacceptable, and I don't believe her excuses for a minute.

    I would definitely install a CCTV camera, quite overtly and with no apology. It would provide enormous reassurance for you and, if you were afraid of offending a support worker, it could be explained by your need to observe the development of your partner's progress, as he has no recall ability.

    My severely autistic niece was being physically abused on a regular basis until a camera was installed in all rooms, which gave her back her safety, and her parents their peace of mind.

    The cameras are inexpensive, easily installed and completely unobtrusive so, although people need to be made aware of one, anyone with honest intentions should have no objection.

    It's a cheap, simple and failsafe option perhaps ??

    Cat xx

  • Thank you all for your comments. It really helps to get different perspectives. I have made my feelings quite clear to the agency and will wait to see how things progress. We do have a structured daily plan, and a daily log is kept and recorded. In six months this is the first time I have needed to complain.... Hopefully this is a one off. (Famous last words) I don't think I will install cameras at this point Cat, but it's worth considering. I am still pretty angry, but the regular carers are good so I'm giving them the benefit of the doubt, for now at least. Watch this space, the Incredible Hulk has nothing on me when I'm angry!

  • No being annoyed is the correct feeling to have in that situation. If it happens, again, I would most certainly phone that support workers supervisor. Neglect, is something that you cannot let stand. I had a worker several years ago, that used to was also, extremely lazy, and used to just leave early. Most of the time, I do not need a whole lot of help, but occasionally I will still experience brain freeze. I try to keep my days rather easy when I'm not seeing my support person. Then on days I do see them, I will go shopping, prepare a large meal, go to therapy, do my household chores, and whatever else I can think of. It's not as if I am exactly unable to do those things on my own, but structure and a little motivation go a long way, after a brain injury. I quickly reported that the worker was leaving early, and got someone else. Actually I don't mind if a person working wt me, spends 1/2 of there time sitting, and using there phone. As long as there properly trained in brain injury, and can quickly step in, and help me if I hit a roadblock.

  • This is a sticky area for the support workers as they can't force any clients to do anything.

    Not sure how this could be written into your hubbies care contract using the mental health act.

    It's maybe worth looking into.

    I actually sacked 3 agencies in less than 2 years awhile ago. One was attending my mum and the first two agencies my daughter had when she moved into independence.

  • Oh if only life were that simple after a BI. Yes I think you are wrong!

    Being able too walk and talk are not necessarily what its all about. There are too many bad days that follow good days. Having it all laid on is not what its about either. If your partner sleeps alot - his brain may need the rest and time to recuperate - that could be weeks, months or years. One night/day I can sleep for hrs, wake up, go to loo, back to sleep for another 6 or more. I'm not tired - it just happens.

    So its not about motivation - its about the messages and nerve receptors - if they are broken or damaged, no amount of encouragement will change that. The brain is not telling him he's hungry either. I agree with a lot here who say 'habit forming helps' but its not a cure-all for everything. If you can't succeed with your partner, why should the carer be any more successful? You both know what is normal - you don't have brain injuries do you and unless and if you experience the after effects yourselves and believe me I don't wish that on either of you - but you will never really understand. I'm sorry to be so negative to you, but its not as easy s you think it is to get someone with a BI to be the person they were before it happened.

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