Caring for someone post severe stroke

[ManjiB]

Hello,

I am caring for my Mum who had a severe stroke over 2 years ago. Due to severity of the stroke, she is unable to communicate verbally and has limited use of left arm and leg (right side of body was paralysed).

I wonder if anyone has experience of looking after someone in this situation and can offer any tips.

I find it very challenging to get the sort of help that Mum requires and that I require to help her.

It seems to me, that due to her age and perceived severity of the condition, she has not had as much help as she might have had and which would have helped her to be in a stronger position to be in. For example, she has had next to no rehabilitative care, especially physiotherapy.

She remains nil-by-mouth after over 2 years despite being able to swallow as the SaLT is unable to approve transition to food via the mouth.

She is still using a catheter when perhaps that could be removed etc.

Despite all this, she is actually in a very good condition given all she has been through and the poor support she has had.

She gets care from agency carers double up (2 carers) 4 x day, but these carers do not have the skills or patience to look after or meet Mum’s care needs. We have tried to work with the carers but they don’t want to listen to us, saying “We are professionals and we know what we are doing”. At the end of each care call, Mum is stressed out, sometimes she is sweating having protested to the carers about the way they are handling her etc. Because she is non-verbal, the carers do not seem to understand or unwilling to try to “work with her”. More often than not, it seems they see her as an inanimate object that they are here to “clean and dust” rather than a person they are supposed to be caring for. There is no desire on their part to try and get her involved in the care activities such was trying to encourage her to wash her face or brush her hair. All they seem to want to do is come in and get out as quickly as possible. They seem unwilling to work at her pace. Even though she has a half hour care session they will spend less than 10 minutes and leave without even checking with Mum if she is happy with what they have done. As a result on their next visit, Mum will be reluctant to let them anywhere near her.

It’s hugely disappointing when so called professionals seem unable or unwilling to provide the sort of care that they should.

Sorry if this is turning into a negative post.

[Rups]

Hello @ManjiB, this very disappointing because your mum needs all the positivity that can be provided, not just with general care but also aiming for small improvements. What kind of activities can your mum cope with? Not daily tasks but other things she might be able to spend time doing by herself or with others? I am not familiar with treating aphasia but I imagine there are pathways through the NHS, can her GP refer her for physiotherapy? They mention some charities offer this service. I don’t know about home care though, others on this forum might have a better idea about that. Hope you make some headway.

[ManjiB]

Hello Rups,

Thanks for your feedback. I think we may have been unlucky with the timing of the stroke as well as limited options available to stroke sufferers if the clot buster drug administered in A&E does not work.

Mum got to A&E in less than half an hour and under different circumstances she may well have recovered by now. As luck would have it she had a clogged artery and the clot buster did not work for as. As we got to A&E early, we had a second chance in that there is another hospital that specialises in clot removals and Mum was taken there but that also did not work. Once these options were exhausted that was it. We were told that Mum will be discharged from the hospital once medically stable. Effectively she was on palliative care but we wanted her to get rehab.

After that, post stroke care and support has not been that great imho. It seems this condition is not well understood or treatments are not as advanced as for other conditions. I feel guilty when I express such views and might come across as ungrateful, but I am trying to be honest with my views and I think I have realistic expectations.

Again, GP has not been very helpful and has not supported the idea of physiotherapy etc. When pushed they reluctantly make referrals but these turn out to be “tick box” exercises i.e. the physio will do a few tests and conclude there is not much that can be done for Mum.

In our experience, we have found the timing of the tests is critical in that if at the time of the test Mum is not responsive the specialists cannot make recommendations as per their guidelines. Unfortunately for us in most cases Mum was not responsive at the time of the test and then at best we got another referral after six months etc. This has happened with the SaLT and Physios.

I haven’t found any charities that are able to help, but I will look into this.

For now, all I can say is that Mum is still with us despite all the challenges she has faced during the period and she remains, as far as we can tell determined and continues to help herself as best as she can.

Thanks again.

[ManjiB]

Hi Mahony,

Thanks for your feedback - much appreciated.

There is frustration and there is also some anger which I am trying to channel. I am definitely of the opinion that Mum is amongst the forgotten and I am not sure how many there are in this category. In dealings I have had, I get the distinct impression there are pigeon holes and once you are classified in a certain category that is how you will be treated despite each of us being individuals and having different needs and abilities etc.

Mum is not your average nonagenarian. Before the stroke, people used to be amazed when they found out her age as most would have guessed she was 20 years younger. Even today, when people see here they are surprised how well she looks considering her age and the severity of the stroke she has had. Her GP and others when they finally agreed to meet her in person always said “They were surprised to see Mum the way she was i.e. they found her much stronger and fitter than they had expected from the discharge notes which were way out of date and did not reflect her true condition. Even today nearly two and half years after the stroke, there are agencies who still go by what the discharge notes say rather than her present (true) condition and this is quite a problem and why she does not get the care and support she needs.

With regards to carers, taking into consideration the shortage etc. the problem we have found is that Mum is not able to communicate “normally” and a family member always advocates for her. The advocate is accepted everywhere e.g. with GP, hospitals etc. but for some reason agency workers and their management are of the opinion the advocate “gets in the way” and they can’t do their job without feeling uncomfortable. This poses a huge problem since Mum is unable to explain or say what she wants and the carers are unable to understand her needs. The end result is a stressful care session for Mum. Just to be clear, she is very cooperative and helpful when family tries to do the care that the agency workers do, yet the opposite seems to be the case when the carers are doing their call. It has been suggested that Mum knows it’s the family or carers and behaves/reacts accordingly. We don’t believe this to be the case and to be fair we can’t categorically say she even knows the family other than they are faces who care for her.

Though Mum’s care needs have been assessed and commissioned carers are provided, the package that is delivered is nothing like the package that has been commissioned and there seems to be no accountability. Agencies simply walk away if they are challenged saying they cannot provide the commissioned care package, yet they are more than happy to carry on if we keep quiet and allow them to do as they wish.

Mum has a dedicated social worker but she has not been of any help. If anything she has caused or further exacerbate the problems. She keeps telling us that carers or physios are professionals and we should let them get on with their jobs. This even when a clear and distinct level of incompetency has been displayed. The social care element of the care team is just as shambolic if not worse than some of the other parts. It’s all about ticking boxes!

As mentioned earlier, for a very long time the GP had assumed (wrongly) on the basis of the discharge notes from the hospital that Mum was a palliative care patient and so she refused to offer any support for rehab. For a very long time (even before the Covid days, she refused to come and do a home visit. She did not even come to visit her post discharge to do an in initial assessment – this despite being her named GP. When she eventually did come and visit, she remarked how pleasantly she was surprised to see how well Mum looked. Sadly by then the windows for early rehab and post stroke care had long since passed.

The the SaLT is unable to approve the transition to food because the assessment they use is always coming out negative and their windows are small. So for example, they will visit and if in the 15 minute window they see no sign Mum is able to convince them she can safely swallow they will not move forward. They usually offer Mum some tea or drink and ask if who would like to drink. Mum always refuses and so they say she is not ready. I don’t know why Mum always refuses but I know she able to swallow and the reflex is strong. She is always swallowing during the day when she is having her PEG feed etc. The juices that build up in your mouth at meal times and during the day, the spit etc. she never spits it out. But she always fails the test. I don’t know if this is because is NEVER hungry or thirsty since she is fed and watered throughout the day. She has a liquid feed quota and a fluid quota and it is always given in a timely manner so her natural bodily functions of hunger and thirst are never triggered. That is the only explanation I can offer.

Not sure I can afford to pay for care privately and I am not even sure if that would be any better. Sometimes I think money is not the answer. I have paid for things at the top end of the market and found them to be no better than those available at mid or bottom range of the market, though there is a saying which may be true that “You get what you pays for”. My apologies for the even longer reply to your reply.

Wishing you all the best and thank you again for your input to my post.

[Rups]

Unfortunately, @ManjiB, our health system is behind some countries when it comes to rehabilitation, but on the positive side, it is mostly free to everyone. Many schools of thought would encourage you to continue working with your mum on her improvement, no matter how small, an improvement is an improvement, and can only benefit a survivor. Our medical professionals have been trained by archaic theories that often dominate their practice, and for some reason they remain closed-minded to these, maybe it’s a pride thing, perhaps their own brains have wired to that mentality, and can’t make new connections. Or perhaps it is just too much effort to be progressive.

Have a read of Norman Doidge’s The Brain that Changes Itself, and also Peter G Levine’s Stronger After Stroke. These writers are advocates of neurological-plasticity beyond age and severity. As a caveat, there will of course be injury that may not fully improve, for whatever reasons, but we only get one chance at life, so every positive effort is worth a go. You may end up having to do some of the physiotherapy yourself, or with the help of family and friends. This may involve speaking practice using pictures, sitting down Tai chi, music therapy such as singing, drawing, and other things depending on what your mum likes and how capable she is. The most important thing is not to let her stagnate, because the plastic paradox is, that as much as we can improve the brain with positive stimulation, sedentariness can wire it the other way.

[ManjiB]

Hi Rups,

Thank you. I will check out the books.

We are doing as much as we can but we don’t have the “professional” skills, knowledge and experience. That said we have learned a lot whilst caring for Mum and we are all better and stronger for it. We never gave up and never will.

Thank you for your support.