Mum had a stroke ...what now?

[MrsPelligrinoPetrichor]

Mum is in hospital with either a brain tumor or a stroke, she had personality changes and loss of speech, got really thin, forgot to drink, was in a real state when I got to her

She's been in the emergency ward since Monday, she's waiting for an MRI to confirm exactly what we're dealing with.

She has private home helps/ cleaners but I think she'll need every day carers coming in to prompt her to eat and I'd like that from an agency when she gets home.

She's partially sighted, has hearing loss and has a spinal injury and now this, she's extremely vulnerable.

I'm terrified they'll just kick us out of hospital and off the emergency ward and home . I live 3 hrs away but I'm staying with her at the moment.

Do I ring social services? She has savings but not sure how much but well over 23k so she'll be self funding?

I have requested a needs assessment but that's 6 weeks away.

Do I need to see someone at the hospital about it?

Help! 😭

Sorry to read this OP. She won't be getting kicked out of hospital, she'll need diagnosing and stabilising first. Then they will assess her needs to see what the best place of discharge is and what support she'll need in place. They have discharge co-ordinators who will help with this. Try to take on thing at a time.

I’m so sorry to hear what has happened. My DH had a stroke recently and the hospital arranged a family meeting to discuss potential discharge timings and all the various support that is on offer. I would expect for you that this would include carers as well as physio. She shouldn’t just be discharged.

Sorry to hear about your mum. Once she's had the scan the doctors will make a plan. Don't worry too much about her going home at the moment. The hospital staff will look after her, you don't know yet what care she will need, it may be rehab, a carehome, home with increased care. Are you staying in her house, do you have power of attorney. I would wait and see what the doctors say then let the nurses, therapists, social worker, discharge team help you both.

This is very encouraging and I've just had a little cry with relief.

I am staying at her flat at the moment , I just don't want her coming out with no proper care plan in place as I am due to have an operation any minute and so will be recovering myself so I must know she's safe.

She is actually improving daily and is better than she's been in a long time but she will need lots of support.

Thank you 😊

Take care of yourself too, tell the hodputal that you will be gaming an operation and will not be able to look after your mum.

I suggest you start looking at care homes now.
I chose a care home in a hurry as I was so worried my mother would be kicked out of hospital, I should have chosen with more care.

OT from discharge team will need to visit and advise whether it is safe to discharge her home, including what aids and adaptations she may need, and there should be a funded system available , possibly called Intermediate Care or Reablement team, to organise carers and any community nurse or hcp visits to support her. If that is not forthcoming ask about Rehab wards where she can access physio, salt etc to recover for discharge. Do not suggest you are available to support her at home and highlight the difficulties you see in her managing by herself, Many elderly patients will overestimate their ability to cope and the support they have available, out of fear of losing independence and resistance to help.

Oh I've heard of reablement. I live 3 hours away, there needs to be proper care in place.

She doesn't need a care home yet, she needs support at home. The thought of looking for a care home is overwhelming!

I'm an Occupational Therapist in an acute hospital, don't worry just ask to speak to the OT on the ward and explain your concerns and circumstances. At our hospital all patients with these kind of symptoms and elderly would get an OT assessment and their needs assessed prior to discharge. All hospitals have access to teams of carers and therapists to look after patients initially on discharge and transfer their care to a private care agency if long term care is required. Even if a care home was required you would not be expected to find one instantly, the NHS also has access to temporary care home beds where patients are transferred to when they do not need to be in hospital but need to be cared for💐

Thanks for all your messages, I can sleep a bit easier tonight.

Trying to find agencies that weren't full last week was a nightmare, every one I called was full.

She hasn't had a diagnosis yet so don't panic. The hospital aren't going to suddenly discharge her. Be clear in what support you can and can't give her. Ask if she has any rehab potential and if so fight for it. Depending on diagnosis you may need to think about potential capacity and POA. Do you have POA for health and finances?

Started POA for finances but not finished yet,next week's job.

She has speech issues/vision loss no loss of body strength apart from making her extremely tired and she already has CFS and a spinal injury so this is the last straw really. Lost over a stone as she was forgetting to eat so really is in a sorry state.

If there's a delay with financial poa and you or she need access to money for bills you can try and set up 3rd party access with her bank with her permission.

She set up a carers debut card for me to use ,but it still relies on her transferring the money to tha account. They wouldn't let me have total access as we don't live at the same address which seems bonkers.

Had a brief chat to the doctor who said she's not going anywhere without a diagnosis and no one will be kicking her out without a plan in place.

That's good to hear, hope she's doing well, let the staff sort help for you both.

Make sure you attend the discharge planning meeting OP…..if you got any concerns immeadiate raise an unsafe discharge concern with pals

Hi OP,
I'm a community SLT and mostly work with people with neurological conditions (stroke and brain tumours), in nursing homes or their own homes.
She's still in the acute stage right now so expect lots of tests, and depending on the facilities where she's being treated, should have some longer term rehab (where I am it's a month of intensive OT, PT, and SLT). After this, if she still needs support she'll be referred to the community rehab service (CRS) or equivalent. This is where my job usually comes in, I see people for long term communication and swallowing input (up to a year) to help them regain as much function as possible.

The speech/communication issues can be a huge shock, but there is lots that we can do to help her regain some of those communication skills, and family support really helps. We often see lots of really rapid progress in the very early stages of treatment, but slower progress continues long after discharge too.

I know it is a really scary time, but there are resources in place to help her, from the moment the stroke happens to long after her return home. It sounds like you're doing everything right, supporting her and asking lots of questions about what you can expect from her care.

Thanks you for all your posts, results from MRI tomorrow.

Hows things going OP?

Mum's improving thanks for asking. Results of MRI tomorrow so I am hoping there will be a plan in place soon.

Had a hellish weekend, she's on a mixed sex ward with male dementia patients who wander freely into the ladies part of the ward, it's really awful,she is terrified as they keep trying to get into bed with her. I had to tell the ward sister I would escalate things(ring 999) if they didn't ensure her safety over night.

If the mixed sex ward issues continue ask to speak with the Matron. Hope the scan results came back with good news

@MrsPelligrinoPetrichor that's awful. My nan was in AAU for 2 days last week whilst waiting to be admitted and it was the same. An old man wandering around just in his underwear, a lady insisting that my nan was in her bed.. it was hell. Her bay was like a holding cell. She is on a ward now and things are better. Thinking of you - this has been a terrible time so I feel for you xx

The MRI showed a series of strokes but she has improved a lot and waiting to be discharged next week.

The wandering continues, it's just awful. I have emailed the Safeguarding Lead. His response will be interesting. I'm appalled this is allowed to happen and seems commonplace in hospitals.