Mum in hospital - change of role? = I'm in the way?

[Nicky_1708]

My mother was admitted again yesterday after an 'episode' (she has many, some they find a cause, often associated with acute anxiety/distress). Arrived A & E 6.30, I only found out at 12.00, when got there, taking BP which was super low, they still had her sitting up in bed, and hadn't seemed to have noticed that she had extreme pain in her wrist/hand/fingers (flare up of RA) until I pointed it out. Then I got into trouble for asking could I not help to get her moved up the bed so that the knee bend in the bed was in a good place for her (was pushing into her calf muscles, rather bad for circulation). Faces pulled and one HCA treated me like dirt after that. Nurse got a bit better after I said I noticed the face she was pulling. I feel I have to tread on eggshells to be approved of. Last night they took all her blankets away as she had a low grade fever - I've since found out that it is not current best practice and to me a form of torture as my mother kept saying in a really distressed voice "I'm so very cold", and also "Im in so much pain, can't anyone help me?" They tried many types of pain control and nothing helped, but they did not want to add anything in case she got too sleepy. While she was afraid of not being able to sleep all night which she hates understandably. A night of absolute horror for her and I cant say I slept too well before a busy day at work either.

Last admission, my sister and I had a hell of a time trying to help my mother keep in as good a condition as possible - encourage her to drink, help her to have a walk, let nurses know when she needed something as she often was not sure if she could ring her call bell, talk to Drs so they could better understand her past history and work out together what could be done for the future. I have to say the Drs were great at working in partnership with us, but very many of the nurses just seemed to find us a 'thorn in their side', being very defensive and protective about any information about our other that i usually need to know everything about to ensure she is OK. Shut up and put up was what it felt like. We eventually got permission to visit more often and help my mother from a visiting senior nursing officer on International Nurses Day!

Trying to get similar permission today, I asked PALS to help. They already used the argument of 'then all the patients will want their relatives to be there more often', which really disappointed and shocked me. and then she came back with my request flatly refused and no passing onto senior nursing..... From being asked to do so many things to assist my mother (e.g. care staff can't help with controlled meds, I need to request repeat prns of these controlled drugs, etc) a big responsibility, I hardly spend any time being my mother's daughter. To now, being persona non-grata and not just not required, but actually just in the way. I thought the mantra these days was partnership working with relatives/carers?
Has anyone had similar frustrating experiences? Anything that you have done that helped? I have a lovely nephew who is a doctor who has offered to talk to consultant - no news yet though, but that still leaves the nurses......

Any advice?

[bowlingbun]

Ring the Care Quality Commission, the place sounds dreadful.
Ask PALS if they have a Carer Policy, they should have one. I've had good and bad experiences of the hospitals caring for our four elderly parents. Stqaff are not there to like or dislike you, they are there, paid, to do their job.

[Lo_1701]

Hi Nicki

I had reason to question my Mum's care when she was in hospital early this year. Each hospital should have some sort of Patient Relations team.

I was genuinely concerned about my Mum's safety in her ward, so even though it was after 10pm and the dept was closed, reception put me through to the person who covered from them when they were shut. He dealt with the issues immediately.

[bowlingbun]

Lo, that sounds really positive. I had a lot of trouble getting hold of the PALS Team when mum was in our local hospital.

[Lo_1701]

It was exceptional circumstances, so that might have helped us get a fast response. Plus I'm afraid I had a complete meltdown due to the circumstances and being frightened out of my life by what my SIL had told me, so I think they realised they had to do something to calm the crazy woman on the phone down.....

Mum had only just been transferred to the ward when it was put into lockdown because of an outbreak of norovirus. After a week of being turned away at the door, my SIL decided to ignore their requests not to visit and went in, just to see for herself how Mum was, and she started feeling concerned immediately. Mum's urine was the colour of coke, and she'd gone from a crossword fiend to a confused and frightened old lady in a few days.

The non-nursing staff were behaving appallingly to the patients, presumably because there were no visitors there to check them. We're talking about eyes being rolled at patients struggling to stand, massive and loud passive aggressive sighs when patients asked to go to the toilet, verbally snapping one poor lady's head off when she said she was in pain.....my SIL is a charge nurse in a different health authority and said if any of her care staff behaved like that, she'd be putting them on disciplinary.

I think the most revealing thing was when I spoke to reception and said which ward Mum was in. The response was "aaahhhhhhh" like it explained everything. I can't say I'm delighted at Mum's care in hospital, as she went in with a spinal fracture and died from sepsis 5 weeks later. She'd not have died from sepsis if she hadn't gone into hospital, it's as plain as that.

[christina 17]

Hi Nicky and Lo

It is old fashioned NOT to have flexible visiting times in hospital.
I would state this to the ward manager.
At long last my local hospital authority has stated that they have in the last month changed set visiting to flexible visiting to suit, family, patient and friends. The hospital group is Betsi Cadwaladr in North Wales.

Any way, I never, ever took any notice of hospital visiting times. I always visited my family member, especially my mum, whenever I wanted. I would argue that it was in my family member's interest and that I could not make it in the official vising time or else, I might say that I have travelled along way (even if I lived up the road, but if questioned, would say I had been away, hence the travelling from a long way, away)
I would many a time have to question the staff about Mum left in a wet bed, not had food cut up. Not offered alternative food if present food not eaten, Lack of fluids, charts not filled in etc, etc.

It was wearying, but I had to do it as my mother couldn't speak properly for herself and I would only have worried as soon as I left the ward.
I usually did start to find that care gradually improved as they were possibly on guard for what I might say the next time I was in. And don't hesitate to go and see the ward manager (Sister, Charge nurse) at any time if you find that you are getting unhelpful support or sarcasm from any staff.

Wishing you all the best at this stressful time.
Christina

[jenny lucas]

I apologise in advance if this is financially completely out of the question, but ....

How old is your mum, and how much money does she have? Does she have so much she has to self-fund her own care?

The reason I say this is just to say that if she is currently self-funding, or, indeed, if 'no one in the family' particularly needs the £20k that she will be allowed to keep (IF of course she actually has this!) then maybe you might consider it worth spending her money on a private hospital......

I say this because if she is 'of a great age' then really, you might all think it a better use of what money she has, to spend it on making her hospital stays far, far FAR more comfortable than they currently are.

When my husband had cancer some years ago he was covered for private health care by his employer, and though it made little difference to his treatment, I can tell you that being in a private hospital is a lot, lot, LOT nicer than being in an NHS one when it comes to 'comfort and care'.

I have no idea, alas, how much staying in a private hospital would be self-funding, (I can't imagine it will be less per night than about a couple of hundred pounds?? Think fancy hotel!), and of course I have no idea if this is just pie in the sky for your mother's finances.

I guess my point is really that IF your mum is very elderly and IF she is paying for her own care anyway then maybe spending it now on a private room in a hospital could be seen as 'money well spent' at a time of her life when 'health' and 'comfort' become synonymous.....

[Nicky_1708]

Thank you all for your wonderful support - I am mentally exhausted and mostly incandescent at my powerlessness on the ward. Sadly last experience of private hospital was not good as they were not equipped to cope with a much older person with complex co-morbidities and it ended up in medical disaster that had to be sorted out with a stay in the NHS who did a brilliant job. that was several years ago and i guess that some of these poor staff behaviours might correlate to the relentless decrease in resources, especially for those in older people's care.

PALS have so far been more on the side of the staff saying that I could not visit outside of usual hours as the other patients would not be happy - they might wonder why should we get special permission etc. Unbelievable I know, I was SO disappointed. In fact there is one patient who happens to be a very young looking medical student who has been allowed to have her curtains closed and visitors whenever she wants in the bed next to my mother. Of course I am happy that her family officially get the visiting hours I would like to get, but it is hard to cope with the difference in approach and my mother is missing daylight and a view of the outside as a result (5th day like this now),

I am planning to see if I can find someone from the more senior nursing team in the hospital to support me in my quest to officially get permission so that I am not being told off all the time if i dare to visit at other times. Ward manager was the most punitive to my sister last admission - at one point 'forbidding' her to visit outside of visiting hours! I'll look into the CQC thing too - not sure this is really what they want to hear about though?

Wish me luck. And thanks again!

[bowlingbun]

Definitely is something for CQC. Especially the curtains around the person next door blocking the light. That's not acceptable, poor mum will be even more depressed.
Have you rung the CEO's office? I believe all hospitals should have a formal written Carers Policy. Maybe ask the CEO's office for one?!
Good luck, I know how stressful it is.

[Roshani_1708]

my garnny is also need a female care taker for her...who treat her as her own granny...i am in search of a perfect carer..




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