My mum was allowed home from her care home today. She has been there since July after being in hospital for 2 months because living at home became “unsustainable”. She has Alzheimer’s, vascular dementia and very poor mobility. Dad has lots of physical problems including prostate cancer (which is no longer being treated) and mental health and cognitive difficulties (he hasn’t been given a diagnosis of dementia yet because of his mental health difficulties but it is “strongly suspected”).
This past year has been incredibly stressful and at times traumatic for my brother and me. Some truly awful things have happened. Very long story and one massive rollercoaster.
A couple of months ago a social worker found that my mum had capacity and, as she wanted to go home, she would be able to go home. Another social worker later said that she had concerns, that she didn’t think it would work out but that it was inevitable that she would go home. I’ve expressed many concerns relating to safety (especially stair safety) and dad’s ability to cope (another long story including a previous safeguarding referral). Several care home staff members have said that they can’t see it working. In fact, the only people who seem to think that it’s a good idea is my parents and the last but one social worker. We think it’s only a matter of time before something goes wrong again and mum will end up back in hospital (and goodness knows what after that).
After everything that has happened this past year, I can’t believe we are back in this position. It’s been an incredibly stressful day and tonight I feel very low and teary. My son, who has autism (and with it, difficulty in being aware of others’ emotions) said I looked “sad and tired”. He was spot on!
I know it’s a case of riding all this out and trying to avoid taking on too many demands on my time and energy as I keep getting burnt out. I’ve told social services that I can’t do more than I already do and I’ve been referred for a carers assessment. Mum will be having carers three times a day. Dad has them twice a day. Neither of them wants carers and are frequently uncooperative.
There might not be anything anyone can suggest given the circumstances but I just felt I wanted to get it off my chest.
Thanks for reading.
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I am so sorry. I can relate to your post. It seems that there are a lot of dangerous hospital discharges going on right now.
Is it worth getting your concerns listed with her GP as the NHS has a Duty of Care. I am in a similar position with my husband but it has not progressed as far as it has with your parents yet. It seems that a crisis/tragedy has to happen before anyone will step in. Carers and relatives cannot be on duty 24.7. Do you have a local
Support for Carers’ ? If so it might be worth giving them a ring but sadly your situation seems so common nowdays.
I do hope others will come along with some other ideas. Thinking of you
I strongly suggest you email the helpline about this, especially about the mental capacity issue. advice@carersuk.org
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"You have been referred for a carers assessement!?!
This should have been done BEFORE SHE CAME HOME.
I get so annoyed with social workers who don’t do their jobs properly.
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Thanks for your replies everyone.
Helena - I wonder why there seem to be so many unsafe discharges happening. I would have thought that social workers have a duty of care too. Thanks for your suggestion to speak to the GP. That’s a very good point. My husband had said the same thing funnily enough but I hadn’t acted on it yet.
Charles - thanks for your suggestion re the advice line. That’s something I will do too.
Bowling Bun - That hadn’t occurred to me. I, and other people have had the impression that they are trying to get me to take up more responsibilities with mum being at home unfortunately, even though I’ve said I don’t support the decision!
Another tough day today. Mum has only been home a couple of days but this morning dad was saying he can’t cope and she should go back into a care home. He had changed his mind by the night though, so we will see what tomorrow brings. They are already bickering and dad has been using “shock treatment” (as he calls it) by saying to her about her going back into a home. My nerves have been on edge all day today. I really must try and relax a little!
Heya.
Make the utmost of the care needs assessment. I found it helpful to sit in the living room with the social worker who came out to my house in order to do it and talk. I had a checklist and made brief summary notes to refer back to after the chat was over. This is your only chance to discuss your concerns face to face. Be honest and positive at the same time. If it helps you, please do feel free to request from them a written record of the report afterwards. They should email or post you a copy of the report. Good luck. I discussed all sorts of issues during mine. I even talked to them about finding and maintaining the equipment and so on. Highlight any discrepancies in the report. Read it twice.
Do your own research on the care companies carefully. Trust your gut feeling here. Use your brief summary notes. Focus on learning more about the skills and qualities of the care company in question. Look at the website of the care company to discover information. Talk to people working at the care company on top of that. Prepare a helpful sheet detailing your cared for person in addition. Mention literally anything to them that could be useful to them. Visit a entire bunch of care homes in the area. Gather that information. Preparation is key. Reflect on the care company or home. Take a look at all areas of the place.
Why so many unsafe discharges? Simple. The hospitals want their beds back, especially on Fridays. They may be medically over the crisis that took someone to hospital, but they won’t be better, but usually less able than when they went in. Noe enough paid carers? Send them home anyhow! Then the kind daughter will take pity on the aged parent and do it for free. Carers Assessment? No need. I was in this situation so many times.
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Yes make the family ‘step up’ even if in my case I have been doing it for 10 years officially probably longer unofficially, and the effect on MY mental health has been huge. No easy answers are there? If I had accepted the Junior Doctors offer of carers and support, husband would have simply discharged himself. So I am going to ‘play them at their own game’ and just do the minimal prompting and if he does not take the a/b so be it. I prompted twice re the evening ones last night and they still there. I feel for you Wendy as I feel my husband needs 24/7 monitoring. I asked Junior Doctor if he was taking his pills in hospital and she said ‘yes’ but then laughed and said ‘but they usually do in here but not necessarily when back at home’. I am getting to the stage where I am no longer going to ‘pick up the slack’.
Thara, all very good in theory, but the reality is a million miles away. Sometimes, as happened to my mum and my mum in law, it may just be a phone call saying “we are sending mum home this afternoon”. Once a ward sister said if I didn’t let the hospital bed be delivered to mum’s house, she would take mum’s key and do it herself! That is the reality.
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As carers, we must not lose sight of the fact that a dementia diagnosis in itself does not mean the caree no longer has capacity. Your mother and father made the decision for her to come home. It may be a decision that needs to be reversed in the near future but if it were me, I would try and support their decision fully for now.
Let the professional carers deal with uncooperative clients as well as the physical demands of caring. If your parents absolutely refuse personal care, ask the carers to spend their time preparing refreshments, doing light housework etc. If there are concerns about risks, the carers will report back to their superiors who will pass on those concerns to your mother’s social workers (or to you for you to do the same).
Hope none of the above comes across as patronising. I have the same issue with my mother and once I reconciled myself to supporting her decision it felt like a weight off my shoulders. One less battle etc.
Yes I did not even get a call despite prompting and husband not even having keys. I had to chase and chase to even get someone to speak to me. Yet when I asked if they would have sent him home if he lived alone they went quiet. In fairness he had apparently been telling them his much younger wife wanted him home and how much better he felt. No one gives a dam about Carers even if we are on the verge of a breakdown.
I take your point Latreia but in my case Carers were not offered.
In the case above, it sounds like a mega dangerous discharge and surely a tragedy/crisis is going to happen? Most relations will do this best to try and avert it even if it is determental to their own health. With regard to my late father, the Carers were constantly contacting me telling me my late father would not eat or take his pills and could I go round. In the end, I simply wrote to the GP saying I no longer wanted to be on file as next of kin. I was caring for my much older husband too. But with my husband I simply cannot do this as I am at home 24/7. He is medically non compliant and sleeps a lot of the day and is awake a lot of the night, so knowing if he is taking his inhalers is very difficult. I accept he has ‘mental capacity’ and if I had not had him back would have simply discharged himself. But what kind of life do caring people like the poster have? Why should WE be made to put our life ‘on hold’ to the point of being driven nearly to a breakdown just because THEY want the patient out of hospital? Sorry for rant but feeling very bitter right now as the NHS is NOT free as I was a high tax payer for many years as was husband.
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Thara what the NHS should do and what it actually does are two different things as I discovered after finding ‘Discharge Policy’ online. I stay with my Surgery although it is different from husband’s and makes life somewhat complicated, because my GP is truthful. He rather ‘shoots from the hip’ which some patients like but I do actually respect because I would rather (and need for my mental health) to know the realities. Do you know how hard it is to find a good Care Agency? The wait for a NHS discharge package would have been very long and the posters mother may well have discharged herself, and however fragile she is , if she was deemed to have 'mental capacity ’ and they needed the bed, she would have been allowed to.
I disagree. We all have our own lives to live.
It is up to us how much support we offer our parents, they have no right to tell us, as adults, what to do. I learned this too late in life. My brothers did nothing.
Thara - My mum has carers already fortunately (same as my dad’s). The care package started on the day she came out (of the care home, rather than a hospital). They are great. It’s a carers assessment rather than a care assessment which is in the pipeline (to “cover off” other needs not necessarily met by paid carers).
I feel for you Helena. It can be so hard can’t it? I totally get what you say about picking up the slack.
For me it’s been 3 years since I had to start getting involved in my parents’ care (and those needs have grown gradually since then). I have a (now nearly) 13 year old son who has autism (and several other problems such as asthma, allergies, obsessive skin scratching/picking/hair pulling). He has been affected by things going on for the last 3 years. It’s been very unsettling and frustrating for him at times.
Before my parents’ care needs began 3 years ago, I felt I needed some respite from my caring responsibilities (for my son), even if it was just to take a bit of time whilst he was in school to go for a walk (to get some exercise and take care of myself). Also up until 3 years ago I was studying. But I have had to park that. So I have much less opportunity for respite and I can’t continue with my studies.
I’ve been feeling burnt out since before last Christmas and feel I’ve reached my limit (physically and mentally) already without adding on extra caring responsibilities as a result of mum being at home.
I agree that some social workers don’t care about family carers even if we are driven to the verge of breakdown.
My brother and I think that it is just a question of time before there is another crisis and then goodness knows what.
Re mental capacity, we believe that mum was masking on the day she was last assessed. Someone at the home said she was chatting away like there was nothing wrong with her during that meeting with the social worker. When she was discharged from hospital last summer she was found to not have capacity, as to care needs at least. If she was assessed again she could well be found to not have capacity (it’s a very changeable thing of course).
I’m not sure why you are disagreeing with me as I was advocating just that really.
Sometimes we can’t see the woods for the trees and I was suggesting a bit of positive mental pruning alongside making (perhaps better) use of the professional care provided.
EDIT: @Walker_22031 It does seem bonkers that your mother’s capacity has been decided by a non-medical support worker. I think bowlingbun has misinterpreted my initial post, I really think you should take a step back from this decision as far as it might affect your caring workload. Take care of yourself and your son first, surely that is what your parents would want?
Mental capacity assessments are always supposed to assume capacity unless it can be proved otherwise. My son is brain damaged, he has had some good ones and some awful ones! If social workers assess someone as having capacity because they say clearly they want to go home, which “home” are they thinking about? My mum was mentally quite with it, but when she thought of home and the things she liked doing there, she would talk to social workers about what she USED TO do, not what she had to give up due to her disability! She also forgot I too was getting older and had been very I’ll. She said to me that “it wasn’t as if I was 60….” Implying it was an easy task for me, when in fact I was only a month away from the 60th birthday! So I don’t think we should support decisions based on a fantasy which leaves family, yet again, picking up the pieces. My husband died of a massive heart attack at the age of 58, soon after his dad, my dad and his mum, and we had a son with LD too. I’ll always believe the stress of caring killed him. Any discharge capacity decision is going to be biased in favour of discharge, surely? Then the fallout falls to someone else.
Agree totally BB as that is how it is with my husband . When he had the heamatoma and tried to discharge himself, the Consultant said that none of the team thought he would be capable of living by himself. Yet they still discharged him and it was automatically assumed I would pick up the slack. I do not know what the answer is. Your husband may well have paid the price as I do feel so many Carers get driven close to breakdowns. I suppose the only thing we can do is disengage but many of us are compassionate and that is very hard to do.
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Mental capacity is not necessarily a medical issue. It actually doesn’t require anyone to have a diagnosis of any condition for a Mental Capacity Assessment to take place, just a concern that they lack the necessary capacity to make a decision. An assessment can be carried out by one person - a medical professional or social worker, usually - or by a group of people, but it should take into account the views of everyone involved who has knowledge of the individual being assessed.
The assessment is basically a test that someone can go through the stages of decision making: taking in the necessary facts around the decision at hand, remembering those facts for long enough to make the decision (a common faltering point for some people with dementia), weighing up the pros and cons using those facts (often an issue for mental health patients and people with various learning difficutlies), and communicating the decision.
The third stage is the one most often missed, both by the person being assessed, and by inexperienced assessors. And, as BB says, the Mental Capacity Act requires an assumption of capacity in the first instance, so it is sometimes allowed to slide. My son has autism. He can be supported to make some decisions, but where his obsessions rule he cannot manage the weighing up stage. This happened years ago with my sister, who told the doctor who assessed her that “absolutely nothing” could go wrong if she was discharged from hospital following a stroke. She was so fixated on going home that she didn’t consider any possible issues. It’s quite possible that something similar has happened here.
Thanks for your comments everyone. If I go quiet it’s either because I am caught up in chaos or I am struggling (or both!).
My mum has now been reassessed as not having capacity and after lots of reasoning (based on lots of concerns) by the social worker in a very uncomfortable and upsetting meeting, my mum agreed to return to the care home and my dad seemed resigned to it. So, arrangements were made for her to return on Friday. However later that day dad said mum will not agree to it and she won’t be going back (I thought they would probably both change their minds). I am supposed to be calling the care home today to agree on a time for Friday but it all seems up in the air again and I have absolutely no clue how this is all going to pan out. I’m awaiting a call back from the social worker.
My brother says he cannot see how we can get her back there. My husband, who can be very forceful when he needs to, has offered to help my brother and I get her out of the house on Friday. My dad is very determined and has previously said that if it came to someone saying she needed to go back to the care home he would baracade her in!
Very stressed right now. We were disowned twice by dad last year because we stated our opinion in the best interests meeting that we felt care home was the only viable option and the way I feel right now, if I was disowned again it might actually be a relief. This past year has been really so stressful and at times traumatic (and the two years before that not much better!) and it’s clearly not over.