Feeling desperately over loaded

[Curly-sue]

Sorry it's been a long time since I've been on here but I need to air my frustration. John has been in rehab for 4 weeks now and was doing really well with his physio to start with but because all they've done is get him to slide on a slide board from bed to wheelchair and vise verser and not much else until last week then they got him standing and walking which really pleased him but that particular physio has gone on annual leave so he has another one who has gone back to the beginning which has got John really angry so he's refused to do the board transfere and won't cooperate with her so she told me today that she is withdrawing all therapy unless I'm there which has put huge strain on me and is totally unfair she's also told the nursing staff to hoist him again because he refused to board transfere in his therapy session it's like he is being punished for kicking off but my concern is that this is a head injury rehab and if the staff can't handle a patient that gets verbally abusive because their frustrated they shouldn't work in this kind of unit. Do you think I should demand a new physio for him as he clearly doesn't like her and won't cooperate with her. They say I'm the only one that can calm him down but I live 14.5 miles away from the hospital and have 3 kids to care for so I think the hospital and John are relying to much on me. It also doesn't help that John won't eat the hospital food so they have asked me to make him lunches and dinners to put in the fridge so he's got my food this is challenging in it's self. I'm so over loaded with everything I can't think straight I'm so fed up 😭 😭 😭 😭 xx

[paxo05]

Hi Sue.

Unfortunatley it looks like things never change. It was like this for me 16 years ago.

My physio's were on 6 week rotations. So every 6 weeks it was back to the begining to be reassesed.

Until my wife stepped in and asked for some continuity of treatment. I still got reassesd every 6 weeks but then they picked up where the previous ones had left off.

I had started to refuse treatment and looking back I could have been still in a wheelchair if not for my wifestepping in.

Keep telling them your point of view and that of your husband. Physio's are wonderful( if at times sadistic) but "hospital policy" can sometimes get in the way of treatment.

Hope you get sorted.

Pax .

[Curly-sue in reply to paxo05]

Thank you pax. I'm going to air my views tomorrow and get it sorted hopefully xx

[cat3]

Hi Sue. You might try phoning the consultant's secretary to arrange an appointment to speak with him about your concerns.

No way should a professional be losing patience with a brain-injured patient, nor should you be expected to have so much involvement in John's supervision at this stage of his treatment.

They should respect your obligations to your children and the distance you're travelling. You're also a casualty in this unfortunate situation and certainly not a member of staff.

Best wishes to you both. xx

[Curly-sue in reply to cat3]

Unfortunately cat3 I work as a health care assistant in a hospital and they know this and they take advantage of the fact but I am going to speak with the consultant tomorrow and put in a complaint because their making him angry. The other day they put a jug of water on his table he told them he doesn't drink water so please remove it they insisted he have it on there he told them 3 times he didn't want it so in the end he through it I told this was inappropriate behaviour and he said they should have listened to me no-one but you ever listens to me that's why I get cross so I can see where he's coming from they talk to him like he's completely mental and he's far from it. Xx

[cat3 in reply to Curly-sue]

Maybe you could ask the consultant to set up a definite care plan, to which all parties are agreeable, and which allows John to feel his treatment is progressing.

If he can be allowed some control in his daily regime and to push himself to acceptable limits, he might start to feel a sense of accomplishment rather than the frustration he's stuck with now.

Good luck today with the consultant Sue ! Get back to us when you can. xx

[Sem2011]

Hi Sue

To restart physio is to me not productive. Yes, an assessment. Professionals should have the patience to deal with difficult situations, especially in brain injury rehab. I would speak to John's consultant or manager in charge of the centre. Working with clients needs developing a rapport and respect. I saw my dad dealt with dignity and understanding. Men are especially proud, and yes I tend to agree with your sentiment, hoist is used as a punishment. I find this treatment unacceptable. It is counterproductive to start physio from the beginning of treatment, and a waste of time and resources.

yes, I agree with Cat to expect you with be with him whilst having treatment is not practical with a distance to travel and three young children. A member of staff John trusts/knows can attend.

I am sorry if it sounds so strong, her manager, John's consultant, I believe needs to know the whole scenario of physio. I believe problem is hers, not your hubby and unless you speak nobody truly knows. Yes, John is angry, but the situation is making him more angry.

Keep us updated and take care x

[Curly-sue in reply to Sem2011]

Thank you for your kind words. Their treating him like a baby and he hates it he's a very proud man and was very independent before all this so he's angry and upset he's not being aloud to start walking because the physios in the other hospital started walking him and then when he was to rehab he thought they would carry it on but they didn't for the first three weeks they had him rolling from side to side on a therapy bed he found this pointless they said it was to make his muscles strong he didn't buy it lol it made him cross. Yeah I think she has a problem with John's attitude he's stubborn he always has been he likes to do things his way but I've told him in this situation he's not the one in control and he has to follow their instructions but he finds that difficult because he hates being told what to do so they then have a stand off and the professionals don't seam to know how to talk him down I'm the only one he seams to listen to but that puts a great deal of pressure on me so I need to have a very long chat with him tomorrow xx

[Tortie14]

Oh dear so sorry you being let down by professionals. In a small way I understand as after my accident I found the physio service generally dismal one physio was reasonable the rest going through the motions relying on giving you exercises and discharging you asap. When I had one particularly bad PT I phoned and asked to speak to the physio manager, complained and got assigned to another PT who was better. Don't hestitate to complain and ask for another therapist and review of treatment plan.

I remember when my Mother was in hospital after several strokes visiting after a day's work and being met with demands to find a solution to the fact that my mother had no appetite and was not eating. It was very difficult being asked to solve problem that the professionals should have sorted out. So I can imagine how you feel being asked to supply food for your husband. It is exhausting being the advocate responsible for getting basic care and services. I also had to make a formal complaint simply to get a chair because my mother was left in bed all the time with all sorts of repercussions on her recovery. It was difficult but worth it. the nurse on the ward encouraged me to complain because she was not able to get the chair herself. Mad!

You also have to balance your needs, your children's and your husband and this will be a long road so please get support for yourself and ask for help wherever you can get it. Are you in touch with Carer's UK and headway?

Good luck with getting the help you deserve.

[Curly-sue in reply to Tortie14]

Hi tortie14, I'm going to complain tomorrow I need things to change their not treating John like he's normal because he has a brain injury but he's memory is getting quite good and you can sit and have a proper conversation with him and he understands everything and he will talk back and make complete sense it's not like he's talking a load of crap all the time don't get me wrong he does come out with random stuff which is not right but that's only occasionally mainly when he's tired. John spends all his time in his bed and they say it's because John refuses to sit in his wheelchair for long periods but to be honest I don't blame him he gets a very sore bottom it doesn't look the most comfortable chair so I will see if he can have a chair by his bed a nice comfy one. No I haven't been intouch with any organisations because this is totally new to me and I'm a bit out of my depth if I'm honest xx

[Lazuli]

When my daughter was in rehab she saw many different physiotherapists all disagreeing with each other on what was causing my daughter's dizziness and nausea. Half the time they sent her back to her room because they didn't know how to deal with her. I can well appreciate how frustrated and angry you and John must feel. It is definitely wrong for staff to take advantage of you. In this situation you are John's mother, not a healthcare assistant.

Do you have regular family meetings at John's rehab? If not, perhaps you could request this. Every so many weeks my daughter, my husband and I would have a group discussion with the neuropsychologist, OT and a physiotherapist focussing on progress to date and goal setting. These meetings were always very patient focused.

My local Headway has an advocate working for them who was available to help my daughter express her wishes and feelings to staff. In the end this wasn't necessary but in circumstances such as yours an advocate would take some of the pressure off you and empower John to speak up for himself or if he preferred the advocate could speak on his behalf. I am a trained as an advocate and although I worked with a different client group, I acknowledge the value an advocate could bring to someone with a BI.

Best wishes.

[Curly-sue in reply to Lazuli]

Hi lazuli, I'm John's wife not his mother even thou I feel like I am sometimes lol. It sounds like a very good idea to have a advocate I'll look into thank you xx

[Lazuli]

Oops!!! (Embarrassed emoticon to be inserted here). Sorry about that. Stressed out mother here. Must read background story before I jump in to comment.

[Curly-sue in reply to Lazuli]

Lol no worries I thought it was really funny xx