Care at home - what can we expect?

Hi everyone, looking for advice please. My elderly mum had a stroke 2 months ago, she now was limited mobility, slurred speech, unable to make food/drink. The hospital have told my 82 year old father that she will be discharged home to him. However he has arthritic wrists and hips and is unable to lift her, so unable to do hygiene things or get her in or out of the car. He has been told he will get 4 visits a day but no provision for overnight and she needs the bathroom x2 per night but is unable to get herself in and out of bed into bathroom safely on her own. The impact of caring for my mum will put my dad in hospital he is already exhausted from hospital visits. Iā€™ve applied for blue badge but Halton council have told me it takes 12 weeks and no emergency lane. Can anyone advise?

  1. Can he get support to take mum to other doctor and hospital appointments as he is unable to do this
  2. What happens overnight?
  3. What happens if he needs to go out?
  4. Can you find an emergency lane for blue badges?
  5. What will happen if he is ill?
    Thanks so much!
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It is a huge issue for you all. The whole episode must have been a huge shock for you all.I used to be a nurse and things have changed so much since I retired 20 yrs ago.
While they are planning for her discharge it is most important that the whole family is involved in the process. Sometimes discharge planning is led by a nurse, sometimes a home care manager ( social services).
Please insist on an in depth conversation before your Mumā€™s discharge is a fait accomplis.
If you really feel this discharge will not work, you must list your concerns and veto the decision if it leaves both your parents at risk.

I donā€™t know if they are arranging one or 2 carers, but if you and your Dad decide going ahead is possible, be prepared for different carers on different days, which your parents may find mithering at first. The carers will not lift (theyā€™re not allowed to). The visits may not always be at the same time each day either but in a 1 hour window (thatā€™s a worst scenario situation)
Regarding your blue badge question, it varies with each council. I have applied for several friends on line in our area and badge has arrived in a couple of weeks, so cant help.
Re trips to the loo during the night, I fear the options will not appeal to you, but you should enquire.
Re arrangements if your Dad was ill, again you must enquire about local arrangements.
If he needs to go out there may be local carers resources who provide a ā€œsitterā€ to be with your Mum while he goes out for a couple of hours to do errands once a week. I donā€™t know how near family are.
It is paramount the discharge does not happen until all options have been explored and your Dad is content with the arrangements and both parents are aware there will be improvement but it will take time.
I am so sorry you find yourselves in this situation.
I do hope someone has mentioned Attendance Allowance as there is a six month wait from application until itā€™s granted

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@rosr hi & welcome to the community. Sorry to hear of your mumā€™s stroke.

I agree with all that @Bagrat has said. Your mumā€™s discharge back home has to be a safe discharge & you have to fight your corner with this. Someone should visit the home & check it is suitable for her to be discharged too & also ensure any aids she needs are provided.

Would it be better to explore other options? E.g. a care facility that can provide for your mumā€™s needs.

How have they assessed that she would be safe at home with your dad? Are they assuming that other family members will help?

You must push back.

Good luck.

Ann

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Hello @rosr ,

Welcome to this forum. This forum is a good place to be for someone in your situation as you will likely get support and information pertinent to your needs.

I concur and echo what both @Bagrat and @Mrs5K say in their responses.

I further add, the hospital CANNOT tell your father that your mother will be discharged into his care.

Be absolutely clear, your Mum must not be discharged for home care until it is safe to do so i.e. the home is adapted to meet her care needs as appropriate.

All equipment is in place, e.g. hospital bed, hoists, care plan, carers etc. etc.

Create a checklist and make sure it is all ticked off.

My Mum was going to be discharged after a week or two - in the end she stayed in hospital for over 3 months before being ā€œsafely dischargedā€ and even then there were issues - the home WASNā€™T ready but thatā€™s another story for another day.

How did the hospital arrive at this conclusion?

Has your mother expressed a wish to be cared for at home e.g. in a LPA (lasting power of attorney) document?
Has you father said he will care for your mother at home?

In the event your mother does wish to be cared for at home, is the home ā€œfit for purposeā€? Does the home need to be adapted?

Who will pay for the care?

Myself, @EMG72 and various other regular contributors to this forum have been discussing this very situation recently and you may find it interesting to read.

Slow stream rehab + feeling gas lit by MDT.

I repeat, create a checklist and DO NOT AGREE to take your Mum home until it is safe to do so and your Father is happy he can care for her has her primary carer.

You may need to contact social services, your local MP and other support services. Hospitals cannot dictate to you (at least I donā€™t think they can).

Wishing you and your family a safe and managable outcome from this unfortunate situation.

Namaste|
:pray:

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Im so sorry to hear about your mums stroke.

The others have guveb you solid advice.

My mum had an unsafe discharge from her stroke ward at Ipswich last summer. Sadly it took a paramedic and a relative who is very experienced in caring for older people to educate me. Iā€™m disgusted that stroke wards are doing this. It is traumaticon top of the stroke related trauma.

  1. Be as stubborn as hell. Follow your gut. Donā€™t allow them to put your parents in this position.
  2. Tell your mum and dad to not reply to anyone if they ask if theyā€™re happy for her to be discharge. Best if they simply donā€™t respond on any way. If you have an LPA thisā€™ll help. If not, you can write a letter stating the ward must get your permission for any devisions about her care/ discharge. Youā€™ll need to sign it and a get a witness to sign it.
  3. Demand that a hospital social worker is involved and demand ā€œdestination undecidedā€ discharge pathway to ensure this happens. A social worker might be able to secure her a ā€˜step downā€™ bed and rehab before going home and theyā€™ll discuss other options.

The NHS can be a cruel place nowadays for older people so us kids need to protect them.

A social worker can slow down the discharge and give you all a clearer idea of life post stroke and the care your parents will need.

Our local MP is involved after the NHS repeatedly let mum down. I hit my limit and reached out to her.

Good luck and please keep us updated.

:sunny::sunny::sunny::sunny::sunny:

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Hi @rosr

Welcome to the Online Community, Iā€™m sorry to hear about your mums stroke.

Iā€™m pleased to see that youā€™ve had a lot of responses and I hope some of these are helpful for you.

I will add that we have some information on our website which talks about being discharged. You can find this information here.

We also have some information on moving into a care home after a stroke, this may not be something youā€™re looking at doing but it could have some helpful information on there for you. You can find that information here.

Please also consider calling our Stroke Support Helpline:0303 3033 100. They may be able to offer some more advice on this and on the blue badge.

If you need anything whilst youā€™re using the Online Community, please donā€™t hesitate to tag me using the @ symbol and my username.

Anna

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Hello - Iā€™m a stroke survivor and a social worker. Unfortunately, too many of my social work colleagues, more particularly if they work in a hospital setting, go along with the pressure for early discharge, which all too often is an unsafe discharge. If discharge home isnā€™t safe and workable, ask for discharge to whatā€™s called intermediate care / step down. Also, ask for a referral to a community stroke rehabilitation / community therapy team if there isnā€™t onsite physiotherapy, occupational therapy, speech and language therapy, etc. Recovery / regaining some measure of independence can be a very long process. Every step has to be carefully planned and resourced. Too many people working on hospital wards choose to ignore this. I know I have done a lot of hospital social work, including 5 years as a specialist stroke social worker, and made myself unpopular, particularly with doctors, pushing for people to have more rehabilitation. I had it when I was recovering, so have tried to get it for others.

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David @DavidHearnden - this is excellent advice, especially as you have been on both sides, both as a stroke survivor and then as a healthcare/social services professional.

We do need more people like you in the hospital and indeed in the community support services.

Thanks for pushing for the cause of stroke survivors - a much mis-understood and under-supported part of the NHS. :frowning:

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Wow, you are incredible. Iā€™m sorry to hear about your own stroke of course but there must be many people out there who are doing well because of your commitment to their rehab.

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I had yet another chat with a hospital social worker today as my mumā€™s in hospital with a mild chest infection. I explained that people who need slow rehab like my mum should have facilities available to them, and those who rehab quicker may be able to do their rehab at home. But itā€™s the other way round and causes massive issues for all involved. I really donā€™t think sheā€™d considered this at all - she sounded flummaxed. Iā€™d be very interested in campaigning for more slow stream rehab.

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Sorry to hear your Mum is in hospital with a mild chest infection. Hope she gets well soon :slight_smile:

It doesnā€™t surprise me the hospital social worker was flummoxed. In our experience, the social workers simply did not understand anything about how Mum needed to be cared for and how she needed to be supported in the rehab. For us they caused more problems than they solved and if anything they put more unnecessary stress on Mum by appointing unsuitable care agency workers to ā€œhelpā€ Mum. When we tried to explain why the carers were unsuitable e.g. due to lack of specialist skills or knowledge, they simply did not get that. You canā€™t expect students [trying to earn pocket money] or trainee carers to care for someone who is totally dependant on others for their care needs and double-up at that!

BECAUSE of the social workers (and we ended up having video calls with a whole team including managers and others) and about the problems of unsuitable care workers, we changed care agencies FIVE times. Extremely stressful and at times I was at breaking point as some of the things that were said and done were unbelievable ad not something I expected from alleged professionals. What made it worse was it was not just the field social workers but all the way up to the senior managers in this particular social service team that were incredibly ignorant and useless to the hilt :slight_smile:

@EMG72 , I think there is a big hole in the stroke care sector and suitable rehab (any type) is just one of the issues to be addressed. I think what is needed is someone who can champion the cause and raise its profile. This is something I have yet to see - someone is is truly PASSIONATE about this and willing to do something about it. Maybe we can get some steers from our friend David @DavidHearnden ?

It seems stroke care is not ā€œglamourousā€ enough.

Namaste|
:pray:

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When my husband had his stroke he was in our main hospital stroke unit for 3 weeks. We were then told he would go to a Stroke Rehab unit and he has now been there for nearly 7 weeks.

We were really pleased as the hospital told us he could expect a lot more therapy than at the main hospital and he would make good progress and all the staff are stroke trained.

The staff are generally really nice but in all honesty the therapy (physio, speech, OT) is very patchy and non existent at weekends. Some days he sits in a wheelchair for 9 hours, bored out of his brains. I mentioned this to the Sister and she said even sitting like that is rehab as you are strengthening your core.

I get on well with one of the physios and admitted to him that we expected more therapy. He said the main hospital is at fault as they build it up to sound like itā€™s non stop therapy and ā€œit is the NHSā€. He says he wishes they could do more but they just donā€™t have time.

Sometimes as we leave after visiting there can be 8 or 9 staff all at the nurses station laughing and joking and my son says it would be nice if just one of them could go and have a chat with those who are feeling low, may be crying or sick of looking at 4 walls. I guess those days are over!

I want my husband home as he is really fed up but at the same time I dread it because I donā€™t feel able to do much manual stuff and he cannot even stand unaided yet. I have suffered from sciatica in the past and once it lasted 5 months and I definitely donā€™t want that again.

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@Trisha2 ,Iā€™m sorry you are disappointed by the level of rehab provided. I have a friend who has had a similar experience local to us and as you say nothing at weekends. This was not stroke rehab and progress was impeded because his hearing aids were not charged over night so as well as his dementia he physically could not hear what was asked of him.
It is important the staff are aware of your physical limitations once the time comes to plan next steps.

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@Trisha2 Honestly, the more I find ut about stroke the rehab the more I realise many people are being neglected in terms of their mental/ neurological health which is the ironic thing.

And the simple recharging of hearing aidsā€¦people need them to work so they can actually engage in SLT and other activities.

I suspect what happens in rehab and on stroke wards comes down to what helps the NHS hit its targets, and justify attracting funding. It sounds like the Arts sector where you need to ticket certain boxes to be awarded money. Other equally important stuff falls by the way side, which in healthcare is unacceptable.

My mum now has a brilliant independent carer to do physio and SLT with her a few times a week. I couldnā€™t do it all myself but I still do it when I can. And my mumā€™s usual carers do a little bit of physio in the early evenings. She needs slow, gradual rehab, so weā€™ve had designed out own programme. And movement is coming back to her stroke limbs.

Iā€™ve heard of people setting up rotas at home - friends and family pop in each day to do some therapies in order to maintain continuity. Plus the person gets a bit of a social life/ mental stimulation (and even have a giggle if they want).

I really donā€™t think NHS or social workers are informed at all. I canā€™t think of any other reason other than plain cruelty. But I like to think better of peopleā€¦

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Youā€™re right about it not being ā€˜sexyā€™ā€¦Although itā€™s also about engaging with and influencing people affected by stroke (thereā€™ll be numerous). I think a campaign is do-able and is needed.

Also, you really went through it and again your experience resonates with me.

Any guidance welcome @DavidHearnden.

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EMG72 - If I may, how did you source this independent carer with physio and SLT skills?

I wonder if I can find similar for my Mum.

Thanks in anticipation.

:pray:

I am trying to produce guidance for social workers (and others) to make them aware of what they should be trying to achieve in working with more disabled stroke survivors. Doing what they can to promote and enable recovery rather than assuming that such people have ā€˜no rehabilitation potentialā€™ and seeing them being written off and condemned to a life of enforced dependency.
The inescapable fact is that too few resources are allocated to rehabilitation - only about 10% of NHS spending on stroke care. There is never going to be enough spent on physiotherapy, occupational therapy, speech and language and other therapies. But, it is critical to get carers in care homes and home care services to work with people in an enabling / reabling way, and social workers can play a part in this, which is why I aim to produce this guidance.
What you and others have shared has been enormously helpful. I want to build on this, drawing on peopleā€™s experiences of the involvement they have had from social workers, what they wanted, what they got and how it could be improved. Social workers need to advocate for more disabled stroke survivors to have what they need to make the best recovery they can. This means social workers challenging the all too common treatment of these people and those close to them.
This is an initiative I am taking at a national level through the social work organisation I am a member of (British Association of Social Workers). In the past, I have also been involved in national initiatives in relation to stroke rehabilitation, more recently NICEā€™s review of its previous guidance.
It would be great if the dialogue we are having draws in others to evidence what is needed and why.
Many thanks.

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Hi David - Letā€™s hope so. We need to raise awareness :slight_smile:
Thanks for your update.
:pray:

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@DavidHearnden firstly what a valuable guidance this will provide.
This could be very long but Iā€™ll try to be succinct (fat chance!)
My angle is really from that of an advocate for patient and families/informal carers in a variety of settings usually when patients are living with a life changing diagnosis but some issues are universal.
I always think patient, family/ informal carers should be an integral part of the multidisciplinary team ( I retired 20 yrs ago when ā€œinterdisciplinaryā€ was in vogue for forward thinking teams!!) Found this definition on line

"the key difference is that an interdisciplinary team actively integrates knowledge and perspectives from various disciplines to work collaboratively towards a shared goal, while a multidisciplinary team consists of professionals from different fields working largely independently, each focusing on their own area of expertise within the broader project; essentially, an interdisciplinary team blends disciplines while a multidisciplinary team simply brings them together without significant integration. " This seems to happen more readily in Mental Health it would seem though OTs and physios are good at it. Or itā€™s just playing with words as itā€™s the team members attitudes that make the difference.
My beef is communication. I believe each patient should have a key worker, especially important when forward planning begins in earnest ( I donā€™t mean the ubiquitous ā€œnamed nurseā€)
This should be someone who can be the advocate and bring concerns to the whole team. It can be any one from any discipline.
Many families donā€™t know who they should approach and would simplify communication.

I was once told as you work down the ward corridor in an environment familiar to you, feeling stressed, then every member of the public you see will be more stressed, navigating this unfamiliar and life altering situation.

It is so important to establish the expectations of the patient and family. It may be totally unrealistic. So many have thought if theyā€™re sending him/her home he must be better or heā€™ll be better once home.

Spending time establishing if patient or family have understanding of the information imparted is crucial. Giving time to explore how life at home will be, where continuing rehab will take place, what support is realistically available how often, how will their loved one get there, if not home based
Who to call for what, the unanswerable question, what to expect, what is normal progress ( we all know the answer to that!!)
This sounds onerous for the HCP but saves time in the long run.
Two final things

  1. MDT meetings, discharge planning etc to which patient and relatives should be invited are terrifying for some families and they should have the option to bring a friend or advocate, who can be one step back from the emotional roller coast of recovery from stroke.
  2. Coping with distress, anger, and fear, is tough, in families. It is easy to get defensive which helps not one jot. It is especially hard when you know resources are scarce and you canā€™t promise what you would like to to. Honesty really matters.
    Communication skills and dare I say role play are so important.
    If people know they are heard, great things can happen
    Encourage professionals to debrief.
    Sorry, Iā€™ve gone on.
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Agree with everything you say. I have direct experience as I am a social worker working with nurse assessors to carry out continuing health care assessments (multi-disciplinary) covering a large county authority in England.

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