The Story of Mine and My Wife since her haemorrhagic stroke

[Stuart]

Hi all,

New here to the forum though I have been looking at resources, etc for a while. I’ll try to be as brief as possible and more than happy to answer any questions or clarify something if I can.

Easter Sunday 2025 [April 20th, a date now etched in my brain] my wife (63) suffered, what was later diagnosed as, a large left sided Basal Ganglia Cerebral haemorrhage with mass effect.

The day before presented normal. We had spent the day with our then two foster children in a local country park, come home, had tea and done the usual bedtime routine with the boys. I then, as is my wont, cooked for us and we then sat down to watch some TV. Around 22:30 my wife headed off to bed as is her wont but essentially didn’t wake up the following morning.

She is also a Type 1 Diabetic since the age of 7 and had always had really good control of it, her weight, health etc. I say this because she woke me with her snoring, quite normal for her if she is having a hypo, around 05:30 and she presented as having a hypo. Unable to speak, clammy to the touch and generally not really with it. So I took a blood sugar reading which was low, but not abnormally so. Still she managed to signal for some glucose (she used jelly babies) so I gave her some and sat back to wait and re-check her sugars in 30m or so. I must have drifted off as then next thing I know she was sat up and rocking herself - I realise now she was trying to stand up and get to the toilet - but only managed to fall to the floor with a crash. Again, later realisation is that this happened as she had lost use of her right hand side.

I re-checked her sugars which were now normal and I just had a feeling that this was not ‘normal’ so I called 999. Long story short, they arrived within 15m and eventually took her to the not quite local hospital as our local was having roofing works done and most of the departments had migrated down the road.

The next 6 to 8 weeks was spent on live preserving care in ICU. She was in an induced coma, had a trachy, etc, etc and the medics gave her little chance of recovery. After this she was moved to the respiratory ward as the stroke ward couldn’t manage the trachy. Thankfully the visiting SLT contacted the specialist PDoC team at Llandough and within two weeks she had the trachy our and had moved to Llandough - what a difference.

The PDoC unit at Llandough is within the neuro rehab ward and is brand new about 5yrs ago. Skip forward 5mths and she was deemed to gave become PDoC Emerged which then triggered an automatic repatriation to our own health board. But as we don’t have a Neuro unit we ended up half hour the other side of where we live, so no real difference.

Sadly, whilst the staff at this hospital were lovely there simply wasn’t enough of them and I firmly believe her progress stalled if not regressed. Skip forward to end of March this year and she was again moved [still unsure why as the hospital have gone radio silent on me] but this time to a specialist nursing care home. In the process of the transfer the hospital managed to cancel her pain relief, OT and SLT but at least the home has physio.

So, where are we at now…?

The home is definitely the right place for her given her continuing complications. She requires 24*7 nursing care for her diabetes, her PEG feed, etc. She is clearly depressed (she suffered pre-stroke with anxiety etc). She is unable to move her right hand side and she has very limited speech - yes / no and other very small phrases but as with any ABI, these are not 100% consistent.

The positives:

• Despite her limited speech and movement, she absolutely knows who we are when we visit, and can even indicate when she has had enough of us. Usually by falling asleep
• we have managed to get SLT restarted after a GP referral and calling on someone we know to help, but the first review was only last week. So a 3+ month gap of no SLT
• her care is fully funded by CHC
• I am not worried immediately about OT as the home has a lot of events and things they do which essentially replicates that, but I do feel she would benefit form targeted OT sessions going forward.
• Physio is onsite (see also negatives below).
• The home has a policy of getting all residents up in their chairs, etc daily which the 2nd hospital didn’t (linked to physio negative)
• The home is sending me weekly updates on her blood sugars, how she responds, what she’s done etc …
• I appear to have a good relationship with the manager and their deputy and definitely want to keep them on my side
• All the staff - nurses, therapists, health workers are wonderful.

The negatives:

• By far the biggest negative is that the home is over an hour away and means I can’t visit daily. I have, mostly, come to terms with this
• We hadn’t started setting up our LPA’s [but had literally discussed it between ourselves about 2 weeks prior] when the stroke happened so I can’t officially act on my wife’s behalf, as she is deemed as not having capacity. And this is why having the care home manager on my side is important as we need to work together for her “Best Interests” and make decisions under the Mental Health act.
• Physio etc sessions - the staff seem to defer to my wife saying no when it comes to these and will not try to engage her in them.
  Which to me seems totally at odds with her not having capacity. If she hasn’t got that, then surely you defer to ‘best interests’.

And I guess that’s it in a nutshell.

Me… I’m doing OK or at least was until last week when our daughter officially moved out - only 30mins away but it fried my head as they’ve been a huge part of my support network.

Fortunately I have always been comfortable in my own company, which is good as in the 14 or so months I have had precisely two of my “friends” visit and check up on me! And just last week I started attending a “Lads and Dads” chat session.

If anybody else has any advice on the specifics of helping my wife’s recovery then I’m all ears? Despite the medics stating “this is probably the best she’ll ever be” we as a family have seen clear and obvious improvements. We just need to stay on the ball and ensure they keep doing all they should.

p.s. apologies if this is all over the place but was trying to be succinct and get the crux of it over.

[TennBob]

Wow, you all have really been put through the ringer! So sorry. Fellow hemmorhagic here. I’d only suggest that very few people are going to volunteer to do difficult therapy, so I’d keep pushing her and her therapists to keep at that. Also, like most survivors, I have the deficits I have day to day, but I still am doing more and more with them as I’m closing in on a year and a half, so I’d trust your instincts that you see improvement in her. You’re her best advocate. Keep pushing.

Best,

Bob

[Mrs5K]

Hi @Stuart & welcome to the community. You really have been through it since your wife’s stroke & I have no doubt it has had a big impact on you & the rest of the family too.

It sounds like there are some good positives of the care home she is in & that’s worth a lot.

As the home is too far for daily visits perhaps ask if they will help her with a video call so you can at least see her. Although time for yourself is equally important.

When you do visit you could try doing some physio with her. Ask what is best for her to do. Most of us have to put in work between physio visits to improve as you just don’t get enough physio time. This could be little things depending on her ability level but they all help to build her strength up.

Drs wi often say this is as good as it will get but many people prove that isn’t the case but it does take a lot of hard work and determination.

Shame you hadn’t got the LPAs set up. They are important but something we all often neglect as we don’t think we’ll need them. You can apply for deputyship (i think that’s what it is called). It takes a while but if it will be a long term need worth doing I would think. Office of the Public Guardian can help.

Wishing you all the very best.

Ann

[Stuart]

First thank you for the reply.

@Mrs5K

You can apply for deputyship (i think that’s what it is called)

You are right … I can apply for deputyship but I am reliably told that where her daily care is being handled by the home, then it is highly unlikely that the Court of protection would grant that. But that’s ok - after a bit of too’ing and fro’ing with the care home and their DPO (who as ever get the wrong end of the stick about GDPR and their role as DPO’s but …) we have reached an agreed way forward. They will continue to seek my input for larger decisions and more importantly, I will have access to my wife’s records so that I can help frame better informed responses.

I am in the process of going to the CoP for a simple finance authority so that I can get her deferred benefit pension released and use it for care needs not covered by the home e.g. chiropodists, hair care, travel expenses, etc… I have already been made an 2appointee" by the DWP which means I can make a PIP claim for her and also claim her state pension when she gets there. As I always managed all our finances, then 99% of it was covered, just the above two bits to sort.

[Mrs5K]

Sounds like you have everything under control and it’s great that you have a good relationship with the Home. That will make things easier for you.

Good luck getting everything sorted and I hope your wife continues to make progress.

[pando]

Bravo ! You are doing an extraordinary job in an impossible situation. You have navigated ICU, induced comas, repatriations, radio-silent hospitals, and a 14-month care marathon, all while losing your daily support system. The fact that you are still showing up, still fighting for her SLT and physio, and still noticing her small improvements says you are her single greatest asset.

Since you asked for specific advice, here goes ;

1. The “Physio vs. ‘She said no’” Conflict (How to fix this immediately)

You are 100% correct in your instincts. The staff are legally wrong here. Under the Mental Capacity Act (2005), if a person is deemed to lack capacity, the care team must make decisions in her “Best Interests.” Letting a patient with cognitive/communication deficits refuse physio because she grunts “no” is not Best Interests—it is neglect of her rehabilitation needs.

Here is how to politely but firmly force their hand:

• Request a formal “Best Interests” meeting. Email the home manager and ask for this meeting to include the Physiotherapist, the GP, and the Speech & Language Therapist (SLT).

• At that meeting, ask this exact question: “If my wife lacks the capacity to consent to physio, on what legal basis are you accepting her ‘no’ as a final decision, rather than using therapeutic engagement techniques to meet her Best Interests?”

• Bring solutions, not just complaints: Ask them to try “Passive Physio” (range-of-motion exercises while she is in her chair or bed) and “Graded Exposure” (trying for just 2 minutes, rather than a full session). Tell them you want the physio to happen regardless of her initial refusal, just as they would give her insulin regardless of her refusal, because it is medically necessary.

2. The LPA Situation (Turning a weakness into a strength)

You are right that not having Lasting Power of Attorney is a headache. However, as her husband, you are the Primary Consultee under the Mental Capacity Act. The law requires the home to consult you on all Best Interests decisions.

• Formalize your role: Write a brief letter/email to the home manager stating: “As my wife’s next of kin and primary consultee under the MCA 2005, I request that I am copied into all care plans, physio notes, and SLT reports from this point forward, and that no major decisions are made without a Best Interests meeting.”

• This makes you legally involved in the paperwork, bypassing the lack of LPA.

3. Coping with the 1-Hour Distance (The “Proxy” Strategy)

You cannot visit daily, and that guilt is heavy. But you can create a “Remote Visiting Rota”:

• Ask the home to set up a weekly video call. Many homes have tablets. Request a standing 15-minute video call on a specific day so you can see her, talk to her, and watch her respond.

• Recruit the staff as your eyes: Give the nurses a small notebook (or a WhatsApp-approved channel, if they allow it). Ask them to jot down one positive moment each day (e.g., “She smiled at lunch,” “She held a spoon for 2 seconds”). When you visit, read that book. It will make you feel present even on the days you aren’t there.

4. Advocating for the 3-Month SLT Gap

That 3-month gap is unacceptable, but you have already fixed it by getting it restarted—well done.

• Now, ask the new SLT for a “Communication Passport.” This is a one-page document that tells all staff exactly how your wife communicates (e.g., “Blink once for yes,” “Turns head away for no,” “Facial expression means pain”).

• Ask the SLT to train the care staff on this this week. This empowers the nurses to engage her in conversation, which is therapy in itself.

5. The Hardest Part: Looking After You

You mentioned your daughter moving out fried your head, and only two friends have checked on you. That is painfully lonely.

• The “Lads and Dads” group is gold. Keep going to that, religiously.
• Ask the care home if they have a “Carer’s Coffee”—even virtually.
• Set a “No-Hospital” rule: Designate one hour a day where you are not allowed to think about PEG feeds, physio, or blood sugars. Read a book, go for a walk, or cook yourself a proper meal. You cannot fight for her if you collapse.

Finally, regarding the medics saying “this is the best she’ll ever be”…

You are absolutely right to ignore that. Medics give statistical averages; they do not know your wife. You have already seen her emerge from PDoC, get her trachy out, and recognize you. Keep tracking those small wins. Write them down. When you go to Best Interests meetings, pull out that list and say, “You said she wouldn’t improve. She did. So let’s keep pushing.”

Your immediate action list for this week:

1. Email the home manager requesting a formal Best Interests meeting regarding physio.
2. Ask the SLT for a Communication Passport.
3. Set up a standing weekly video call with the home.

You are not just a husband right now; you are her legal advocate, her memory, and her voice. You are doing a brilliant job. but please do take care of yourself before you tackle the home. Please note; I had some help with the technical side of this reply, Best luck, Pando

[Dexster]

Brilliant info, Pando, which will help a lot of people. This may also help some people: the husband of the lady in the bed next to me registered himself as a Carer. At an instant, he gained a space in the car park, and was included in all meetings concerning his wife with various health care practitioners, was able to set parameters about her care, and had unlimited access to all information. Clever man- good move.

[bob.isle]

Well done @Mrs5K! That’s one of the most helpful posts I have seen on here!
Regards,
Bob Isle.

[Susan_Jane]

Hi Stuart so sorry to hear of your wife’s stroke, welcome to our community and I hope you will find this a useful place to be.

I can see you have already received some useful information, so I won’t repeat, you’ve already got enough information to take in.

Keep posting and let us know how you are both doing, there is always someone here to offer information and advice. Please remember to take good care of yourself too.

Best wishes to both of you.

Regards Sue

[Stuart]

Thank you, or as we say around here, diolch yn fawr.

I’m on a train at the moment, but will re-read and see what’s what later. Some of what you say is already sorted or in progress to being sorted but thanks for the comprehensive reply.

Stuart

[Anna_Moderator]

Hi @Stuart

Welcome to the community, I’m sorry to hear about your wife’s stroke and everything you’ve been through since.

I’m pleased to see you’ve been given some great advice so far from our members, there is a wealth of knowledge here for you to tap into. I would also just add that you can call our Stroke Support Helpline:0303 3033 100 if you need any support or guidance throughout this difficult journey.

It’s great that you’ve seen improvements in your wife and I hope these will continue. Keep trying to look after yourself too, you matter in this too!

If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna

[Stuart]

Returning to these “actions”

>  1. Email the home manager requesting a formal Best Interests meeting regarding physio.
>  2. Ask the SLT for a Communication Passport.
>  3. Set up a standing weekly video call with the home.

Re 1. I’m going to hold off on this as we have a CHC (continued healthcare funding) review coming up with the nurse assessor and we can address “any issues with her care” via that channel. I suspect this will also hold greater weight than any request I might put in as they are the ones paying the care home. I can still request the BI meet but let’s play one card at a time I think.

As for 2 the SLT Team are returning at a different time to see if that makes any difference to my wife’s responses and assessment. Once that is completed I will then request the communications passport.

And for 3, I get a strong sense they’d say no to a specific time but will play that one by ear. Our daughter also visits their mum most weeks during the day and I could always ask them to ask in person about it. They don’t even need to provide the hardware as my wife’s iPad is already there.

Thanks again folks.

Please don’t take any of my replies as dismissing or ignoring any of the ideas or suggestions, but I feel I need to tread carefully and don’t wish to alienate anybody from the care home side.

I’m in this for the long haul whilst still holding out for any miracles.