Where do I start? What the right questions to ask so I can best help my Mum?

It’s been a long, hard 3 weeks. My Mum suffered TIAs due to the blocked artery but due to complications with the operation to clear it, went on to have a large stroke which has now left her without the ability to speak, shallow and move her right side. Her cognitive functions are badly affected.

She was in the Hasu unit at UCLH and now the Asu at the Royal Free in London.
She is in the process of assessment.

We are at the beginning of a long, unfamailier road and we in the dark a little about what we should be focused on to make sure we get the best care for my Mum.
We are asking about her rehabilitation routine, daily schedule and what are her goals. All a bit early, but what should we be asking, insisting on??

Any advice to help us start this journey on the right foot is much appreciated

Any private professionals, alternative therapies ideas are welcome.

Any feedback on the Royal Free?

Thank you,
From a concerned daughter

Hi Rosie, So sorry to hear about Mum.Stroke is devastating for her and everyone involved. Three weeks is very early on in the post stroke process. I am 19 months post stroke and the first weeks are the worst. Basically, it was,for me, an out of body experience abou which I remember very little.

Currently, doctors will be monitoring Mum and assessing her needs. You do not say how old Mum is. Mine hit me at 73. The general rule of thumb is that the younger you are, the better the chances of recovery, but no two strokes are the same. Strokes also vary in impact. Mine left me with left side paralysis, but I could speak and swallow.

The human brain is amazing and can,and does, re-wire itself. It finds new pathways to the affected areas and this can lead to involuntary arm and leg movements. I had quite a lot of involuntary leg movements, but they did not scare me. It meant life was coming back to the limb.

Try to encourage Mum all you can. She will need grit, determination and willpower to move forward. I did all the physios asked of me....learning to stand, walk again, tie shoelaces and wash and dress myself. I can now walk with a stick, cook, bake and make jam. I can even go away on short breaks. Unfortunately, most of us get post stroke fatigue and you cannot fight this. Mine hit on day 2 out of hospital and is still with me. My afternoon nap is due soon.

It is a long, hard road back to being better than you were, although I cannot do many things I used to. Recovery is ongoing and can take years. Mum will not be allowed home until she can manage and it is usual to go on a home visit so that needs can be met and adaptations made. Age UK put in an extra stair rail, hand grips and a seat in the shower. This was done free. Support,however, varies from area to area. I also had six weeks support at home from the Community Stroke Team.

Others will give you for advice. For the moment, I wish you and Mum all the best.

Dear Rosie
Sorry to hear about Mums injury, its a difficult time for you.
No two strokes are the same, but many of us have common problems.
The stage that you want Mum to achieve is when the Doctors confirm she is medically fit. That will be soon, and might have already been declared.
Stroke is then an injury rather than an illness. The good thing is that its all recovery, albeit slow.
From your brief description, Mum will be in rehab for some time.
So might I suggest that your questions are(a) Is Mum medically fit yet ? and then(b) is there a rehab ward at the Royal Free.
There is just masses to learn and John has already touched on many valid points. I do not want to overwhelm you especially as many symptoms etc will not apply to Mum, as we are all different.
Can I suggest something else. Do try and be friendly and considerate towards the medical staff.
Confrontation is a bad option. You can not insist on very much, you rely on the goodwill of the medical staff who are generally rushed off their feet. Being on the ward 24/7 was an eye opener. Some visitors expected to see the Doctors every day, I saw how the staff reacted. It did not benefit the patient, far from it.
Another suggestion. You can not effect Mums recovery. Doctors can not effect Mums recovery, it is only Mum who can do it. If you read various postings on this site, you will begin to grasp that we have to effect our own recovery. Support is great, but its unlikely that you will be able to do much in telling Mum what would be best for her.
Mums recovery will be better if she is not overweight, does not smoke, is moderately fit and is young. Its then down to her own willpower.
I found it useful to keep a stroke diary, nothing detailed, just what I did each day and the level of my disability. Perhaps you could keep that until Mum is well enough to take it onboard.

I am assuming you are her only next of kin. If you intend to be there for her, then you need to start looking after yourself. You can not do everything, you need respite on a regular basis.

Try to get friends and family to help. Driving you about, visits to Mum, laundry, shopping etc. Anything that you can delegate will take a little stress from you. So if anyone asks "anything I can do" be ready to get them to take on a task, preferably long term.
You will be no use to Mum if you crack under the strain.

On the plus side, many of us do get a life back. It takes years rather than weeks, but there is life after stroke. And this site has more tips and advice than anywhere else.

Best wishes
Colin

Colin, I read your post with interest. My Mum had a TIA about 8 weeks ago and four weeks ago collapsed with a stroke. She lay on the floor for, we think 10 hours, before being taken to A&E and then stroke Unit. At 80 she was very very lucky and suffered comparatively few effects !!

4 weeks on ... on the face of it she is fine, talking to visitors, engaging in conversations, etc etc but seems to have made little progress and is in a very noisy ward (which is not helping as her exhaustion is making her symptoms worse). The Speech Therapist, Physio and Dr think she is pretty much ok .... BUT the OT (a few very close friends, my sister and I) are gathering evidence of the actual challenges she is facing ... Mum has some personal care/dressing issues, is argumentative (frustration), sometimes vacant during conversation, dismissive, and is fighting tiredness a lot of the time, etc. Physically Mum is relatively back to normal and is perhaps at 95% of previous mental capacity (if that isn't judgmental) ... but the OT is right in saying the 5% is the difference between being safe at home and not. We feel we are almost dealing with nuances of character change, aside from the obvious limitations, and are thankful the OT seems to be the baton holder at the moment.

Your comment about the patient accepting there is a problem to deal with it an interesting insight. We are beginning to consider whether or not Mum knows she can't 'do it' and is in denial OR whether she doesn't know she is actually struggling.

The OT talks about 'cognitive processing' and we have been advised she is probably looking at another 6-8 weeks of rehab in hospital, but is telling visitors she's completing all the OT tests perfectly and is getting out soon ... "But the Dr's won't tell me when !". So we are having to assure everyone she is not as well as they may perceive and the 'cup of tea test' is part of an holistic assessment... and she is failing !

We are struggling to get anyone other than the OT to give us any prognosis, and feel we are in limbo whilst Mum's getting more frustrated in a hospital ward that is not helping her recover. Although, we are assured that she will be moved to a quieter ward when a bed becomes available.

I've forgotten my question now ... but I guess it's something around how can we help Mum accept she has a problem !? I guess, the simplistic answer would be to let her up to fail and force the issue but I'm not sure what that would do to her overall confidence or is actually a fair/dignified strategy.

Anyway, any thoughts would be appreciated as getting any information is proving challenging as she is currently deemed 'ok' and not 'bad enough for a care pack'. Which begs the question if is Mum's not bad enough for a 'care pack', but is deemed not 'safe' to be sent home to live alone ... we have Catch 22 !!

Thank you in advance for reading the above, I hope it makes a little sense . . . Stuart

Hi Stuart, so sorry about Mum. Stroke is a fearful thing and I suspect our reactions are both similar and varied. To begin with, does Mum know she has had a stroke? I ask this question, because no one ever told me I had one. Listening to conversations, I guessed I had but no doctor or nurse said so. I did, however, accept it at a very early stage. Acceptance, however, is not the same as adjusting....that takes time. Sometimes I dreamt I was well, sometimes I woke up thinking, ‘Today I will be back to normal.’ Eventually, I knew that I had a week side and determined to do what I could to improve. I worked hard at physio and longed for the day I could go home.

My moods varied. Like Mum, I found sleeping difficult. In the end I asked for sleeping tablets. At night, people seemed to come and go ad infinitum and every noise was accentuated. When visitors were too much I would ask them to leave. I could also get short tempered, especially if I failed to do simple tasks.

Mum is at the end of stage 1, when clinical care gives way to rehab. Please encourage her to do what she can. It took me time to learn to was and dress again, even longer to know how to tie shoe laces again. Learning to stand and walk are big hurdles, but they must be overcome.

In my area, you were taken on a home visit...firstly, to see if you can cope and, secondly, to note any adjustments that need to be made. Age UK put in an extra stair rail, hand grips and a seat in the shower...all at no cost to me. I also had six weeks daily physio and OT support to help me cope with living back at home. I have a partner and that helped. I also had to sleep downstairs for three weeks. The Community Team also provided a commode, chair raisers, higher toilet seats and a perching stool so I could sit to wash and shave.

I was also warned to expect falls and I did have a few, largely due to carelessness. Encourage Mum to think all tasks through and break them into stages. In time, I got back to cooking and baking. However, getting back to doing anything takes ages.

Lastly, let me mention post stroke fatigue. It hit me on day two at home and,nineteen months on, I still have to rest in the afternoon. You cannot work your way through it...you must rest.

I was 72 at the time of my stroke, so Mum is a little older. She sounds in reasonable condition given the ten hour gap between the stroke and its treatment. At the moment, she appears not to realise that recovery is slow and requires hard work and patience. I wish her well and hope that telling you my experiences will help. Also, remember not all health authorities are the same. I feel I have been lucky to live in an area where post stroke support was very good.

Thank you so much for taking the time to respond, Mum knows she’s had a stroke and has a long journey ahead. I guess acceptance is a first step in the journey.

I wish you well in your recovery & thank you again ... Stuart

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