Have options for getting your Mum home been discussed with you? Such as a direct payment? The care support she would need would be worked out and a budget allocated to fund this. You could decide how best to use to meet her needs, e.g. employing personal assistants to do this. Advice and support would be available to help you manage this.
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I would appreciate any advice. As I mentioned (I think), my mum has the sort of stroke where she has paralysis down one side of her body, slurred speech and a fragmented memory. I understand she needs more care than I can provide but, I’m still willing to do most of the work. From helping her feed herself to help with therapy. As I’ve also mentioned, the social services and current social worker just doesn’t want to know. I have complained about this, still no reply.
So, any help would be great. Since you’ve been a stroke survivor, you know what’s what. I’m just tired of the BS from these people!
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Thanks @Anna_Moderator , I just want to blow off steam for a while. As I’ve mentioned in some of my rants (or posts as you call it), I’m just tired of been treated like a bad guy by various authorities. As I’ve said to them, “I can’t do any worse than you lot!”. When I sort myself out, I’ll call or message you or one of your colleagues for help. Thanks.
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@EmeraldEyes , don’t get wrong. I’m under no illusion as to what’s what. I know I’m going to need more help than I alone can deal with. But like I mentioned in one of my posts, “I can’t do any worse than the carers in the care home”. But every time I bring up this issue with the care home and the social worker, they keep shutting me down. In other words they want me to “Go away and shut up!”. That’s the long and short of it.
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I know what you mean about care homes. We saw some pretty shocking ones when we ended up putting my father-in-law into a home. He had severe Alzhimers and his wife was battling with cancer at the time. It broke our hearts at the time, to split them up like that. But with the best will in the world we just couldn’t keep them both at home safely as my FIL had already caused one small fire in their home. We also had 2 kids going through their GCSEs and A’levels at the time. The brunt of it all landed on me as I was the stay at home parent and my husband worked. And that is probably what brought on my mini stroke.
Have you considered what would happen to your mum if something major like that happened to you, if she was at home with you and you had a stroke? I’m only asking because people often forget to consider this, particularly when they are fit and healthy themselves. And there’s a higher chance for you if stroke is genetic within your family. I just wonder if that could be one reason social services don’t want to risk sending her home.
Lorraine
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I respect what you are saying. As I said, I’m not delusional about the task. That is why I’m trying to organize things such as a care package, maybe place her in a bungalow for disabled people etc. This is why I’m frustrated. I’ve seen people who have had a stoke similar to mums. Yet, they are been able to be cared for in their family home. As for my mental health, all this messing around is screwing me up. I’m not doing this for the craic! As far as I’m aware, we have no history of stroke in our family bloodline. I spoke to some of my mum’s family in Ireland recently, they too have said to me, “there is no known history of strokes in the family”. I see what your saying but, I’m still pressing ahead. I will not have these people play God with my mum’s life or the lives of others. I’m not backing down!
PS, I see it as more they won’t do it, not can’t do it! As I mentioned, I can’t do any worse than the other people.
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How does your mum feel about being in this care home, has she been able to give any indication as to how she feels? Surely they can’t hold her prisoner against her will. That’s against the law.
Lorraine
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That’s what I’ve told them, but they won’t listen. My mum has on lots of occasions “I want to go home”. But like I said, I keep getting stonewalled!
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Have you been in touch with @DavidHearnden , he might be able to advise or get in touch with Citizens Advice.
Lorraine
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This is an interesting post.
And it has got me thinking.
I must admit, I am surprised that you are being denied the opportunity to look after your Mum. As far as I can tell, and maybe I am wrong, but generally the system (I mean NHS, Social Services) loves it or even encourages family to look after their loved ones. It saves them money, possibly the main reason but also the loved one should get better care all things considered. I wonder if I can play devil’s advocate here.
I don’t know about the exact situation you are in, and I don’t know if there are certain criteria that must be satisfied before a loved one can be cared for my friends or family.
Maybe your Mum’s condition is so extreme that one person (you don’t mention siblings or friends who can help) can cope with the care need demands. Normally they carry out the care needs assessment and this helps determine where and how the patient can be best cared for post discharge.
Also, is it possible that your Mum has expressed a wish to be cared for in a care home? I think maybe her wishes might take priority over yours?
I can see from your messages you are very passionate about caring for your Mum and you have been a carer for many years, but is it the case that your Mum have a stroke has changed her care needs significantly and you can no longer (in the eyes of the system) look after your Mum in the way you used to?
I am really sorry for asking these questions, but I honestly feel there has to be a good reason why your Mum has been placed in a care home - the system tries, and I am not suggesting they get it right all the time, to act in the best interests of the patient.
Just some thoughts that might help explain why your Mum is being cared for in a care home. I am sure there is plenty of advice available out there and many on this forum will also be offering suggestions on how you can get more involved in the care of your Mum. I can see plenty of passion and anger in your posts and I hope you will be able to channel these to best meet your Mum’s care needs and your peace of mind.
I wish you all the best and hope you are able to become more actively involved in your Mum’s care soon.
Best wishes to you and your Mum.
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She has express lots of times about wanting to be at home. Yes, I’m a lone carer but I’ve spoken to people in my position and they were able to have all the help in place (i.e. a care plan) and have the place kitted out for their needs. I’m angry in the fact I’m treated like a scumbag by the system! Especially, by the social workers.
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I been in touch but, no response yet.
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@DavidHearnden Can you help me understand. Who has the right to put anyone in a care home? If I got sick and someone tried to put me in a home I would take them down. Where has anyone ever signed a document to state put me in a care home? I don’t know the system because I have never dealt with it, so just looking for an answer. How come my mother-in-law after stroke was given a choice and people on here have had their partners or mums taken from them? I am not targeting you David, its just you are more than likely to be the one who has the answer.
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2nd post @Pea_WoS , I’m angry because of the unfair treatment towards me and mum. I’m tired of been treated like I’m an idiot and also, the “bad guy”! I’ve been a carer a long time, I know my mum better than anyone. Anyway, I’m more passionate than angry. I know she needs more care than I alone can do. All I’m asking for is fairness. Care homes should be for people who can’t look after themselves or if there is no-one to look after them. Not to hold people there against there wishes and the relatives wishes. That’s what I meant.
PS. caring wise…I can do no worse that the people in the care home.
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@ManjiB @IreneFC , I echo your comment. It’s not nice for certain people and/or authorities to play God with people’s lives. I too would like similar answers.
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Just to be clear, my Mum was not forced to go into a care home. She had a choice and her preference was always to be cared for at home and that is what has happened. No one has tried to play God in this respect.
It has not been plain sailing and we have not had the level of support that is needed in a timely manner. We can speculate as to why and we believe this is because of her age (she has suffered a lot of ageist discrimination and in fact continues to do so). If things had been done in a timely manner she would be in a much better place in terms of health and recovery from stroke.
When in hospital and awaiting discharge, the consultants suggested to us that because of the severity of Mum’s condition, she would be difficult to care for and she might be better off in a care home where they have trained staff, on-site doctors etc. Also, the consultant spoke to me and said “care homes are much better than they used to be”, which I think was his way of trying get us to make a quick decision and choose care home for Mum. But we were adamant that Mum’s desire is to be cared for at home and so they proceeded to plan on that basis.
Our problem was they did not wait or make sure the home was fit for purpose to meet Mum’s care needs. An OT did a home visit and suggested the living room or the kitchen diner with a privacy partition could be where Mum’s bed is placed and then she can be hoisted in and out of bed and her riser recliner chair.
Because of the this, her initial return home was not ideal and could have been more comfortable had we been allowed to make the necessary adaptations BEFORE she came home. But in time these things happened and we are pretty much where we would want to be.
So absolutely, not the case that Mum was refused home care. The challenges came when they tried to provide or source agency carers to support me (Mum needs double up care 4x a day) and she needs 24/7 care which I as main carer provide. This is a very challenging environment and I can see why the consultant tried to warn me that this was a huge undertaking and why Mum might be better off in a care home. I had huge problems with inexperienced/incompetent agency carers and that’s where my troubles with Social Services started because they kept telling me agency care workers know what they are doing, they are professionals and I should “allow|” them to do their jobs.
Mum is aphasiac and needs an advocate to speak for her and the carers/care agency and Social Workers did not understand this way of working. They saw it as “interfering” when I tried to help or stop the cares from harming Mum because they were not using correct moving and handling techniques.
Mum was always carrying bruises inflicted on her by the carers (poor handling) and she used to get stressed when she was “thrown around” like a rag doll. Each time I went back to agency management or social services they were in denial and tried to blame me for it. One social worker had the audacity to say how do i know you did not bruise your Mum. I said well if I had done it, surely the carers would have flagged it to you before I did. Since I am flagging it, and they haven’t, is it not reasonable to conclude they must have done it?
Anyway, there is a lot more on this (I already documented in earlier posts) but the bottom line is where we are they can’t get carers and so they don’t like it when we challenge their competence and agencies pull out because they face risk of being done for safeguarding issues - that is why all our agencies quit. I said they were bruising and hurting Mum which is a safeguarding issue and so easiest thing for them is to quit.
In closing, Mum has never been denied choice of location for care.
Nobody has played “God” with Mum’s life other than a couple of consultants who have refused to treat her or give her the best treatment. Reason being they did not/do not want Mums death on their hands i.e. they operate in her and she dies whilst on the table. Hugely disappointing the consultant thinks like this and refuses to look at the facts and data, but that is the only time I can say someone might be playing “God”. Other than that they did try to clear the clot and tried hard to be fair as they even took her to a specialist at another hospital, but once these two options failed, they had reached the limit of their capabilities and “withdrew” from proactive care and support moving into palliative mode - that has been the saddest part of all this from our point of view.
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Just wondering, could it be that it’s more cost effective to the NHS to put your mum in a care home than to provide a care package in your home, along with any adaptions to the house, that would be suitable to her need.
I’m only wondering because I know Greater Manchester NHS are cost cutting at the moment? They have no money they say. You’re in Wythenshawe didn’t you say? They said all non-essential surgeries are being postponed because they’ve got no money to do them. What do they class as non-essential I wonder? I only know this because my hubby worried he wouldn’t get his cataracts done. They were only taking bookings 2 months in advance at the time he was booked in. Thankfully it seems to be going ahead for the end of March.
Lorraine
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Good afternoon Irene - the pressure to discharge to a care home usually comes in the hospital setting, especially where there is pressure on hospital beds. Individuals & families will be told that the person has ‘no rehabilitation potential’, or told that a period in a care home with some rehabilitation (which often doesn’t materialise) will lead to returning home which subsequently doesn’t happen unless the individual / family pushes for it. Patient choice should determine what happens but it is often difficult to exercise when ward staff are putting pressure on and talking about risk.
Regrettably, there are too few NHS rehabilitation centres about, where stroke patients can have more rehab as a step to going home. Perhaps the Stroke Association should campaign on this.
Early supported discharge services can be a way of enabling people to be discharged home with therapy and care, usually for 4/6 weeks, during which the local authority will be asked to assess what ongoing support is needed and the budget for this found. A big problem with ESD services is that they tend to take less disabled / impaired individuals.
Clearly a lot depends on what informal support the person can count on back at home.
Regards - David
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@DavidHearnden So basically its the decision of the family and the patient and no one should be making decisions other than them?
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@IreneFC , I agree. That’s how it should be. Sadly, it’s getting the other side to listen.
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