Stroke Support Thread

[FlipFlops4Me]

At the moment I think its just me and @namebunny who are using this thread. It came about because we were talking in Housekeeping about the difficulties of running our homes when our DH's have had strokes.

The effects of stroke can vary wildly; my DH is recovering well physically but has suffered severe visual and cognitive effects. He can't see things on his left side, and if you think of looking after a 4 year old - that's him. With difference that my DH doesn't remember things like a 4 year old. If the lightswitch turns off a light today, he won't necessarily remember that tomorrow..... There is no logic in him. And he gets frustrated about it but any further recovery will be very slow indeed.

@namebunny and I are both finding it hard going. Is there anyone else on MN who has a family member recovering from stroke - if so, what did you find that helped most? How have you dealt with the side effects.

One shout out to Zoflora - if there are problems with occasional incontinence (or frequent) or with skidmarks etc - Zoflora in the wash makes all the difference. It's very concentrated so you don't need much.

For eating - my DH has extreme left field visual disturbance - a LOT of food falls off the left hand side of his plate. I always serve his meals using a dishwasher proof (pretty) tray underneath. Quick and easy to clear up!

Please - join in if you have experience of stroke, or a family member or friend - we can all help each other along the way, even if it's just to vent! And lord knows sometimes I need to vent so much I'm surprised my teeth don't crack under the pressure of clenching them to stop myself being unkind.

I hope you don't mind me posting- although I don't have experience of a family member having a stroke , I work for a company who sell pharmaceuticals for
Stroke prevention and form part of their training.

I try to get our sales reps to understand the impact of strokes on patients and their family.
One of the biggest issues at the moment is undiagnosed atrial fibrillation due to reduced patient contact in primary care.
Obvs due to the pandemic fewer people are having routine pulse Checks and a catastrophe of undiagnosed atrial fibrillation means patients won't receive anticoagulant and therefore very very sadly go on to have a stroke.

One thing we should encourage everyone to do is check Our pulses and if it's irregular get it checked out by a healthcare professional.

Thanks

Just wanted to get that message across

Hello flipflops thanks for starting this! I hope not too many people come along 😀
Already I have learnt off you, tip about decluttering and now zoflora!
DH appears to be ok when you meet him, it’s just that he is now slower, more forgetful, tireder and very very down. He doesn’t notice a lot of things so it feels like he’s not here really. Very odd. Very draining.
And not good for the teens who are not getting much of a reaction so are disengaging.
The best tip I had was from a counsellor who said I needed to get on with my life. From what I now know, you can easily get into a codependent relationship which is unhealthy. She was very canny and said, ‘ do what helps you…to help him!’ Clever.

Thanks whitegrenach. That’s really useful to know.

Have a lovely Sunday !

Hi @namebunny - one thing I was told that DH would be tired for months after his stroke. The damage inside the brain is invisible but think of it as a broken leg, and how long that takes to heal and how limiting it is while it is healing. DH has a "broken leg" that might heal a little more but might not, which tells me that it was a bad break to start with.

Thinking of it that way has helped me not to expect more from DH than he is capable of giving, and to help him not to expect too much.

One thing I did was write a journal entry for a whole day just after he came out of hospital, detailing things like helping him to the commode, helping him use a pee bottle, putting him to bed 14 times in the night etc. When he was very down, I read him that entry so that he could understand the difference, and the tremendous progress he has made.

It took a long while to get him to sleep all night, and that was seriously exhausting for both of us but not his fault. He would wake up to 14 or 15 times a night, and each time was very confused. Now he sleeps through and is just a bit dopey in the mornings.

It's said the teens don't understand; it is hard work communicating I know. Hopefully they'll grow in understanding with time.

Sad the teens don't understand, not said! Doh!!

One thing - going back to the occasional incontinence - get a nappy bucket and soak offending items of clothing in a mix of washing powder and Zoflora if they're truly awful. I started out by chucking underpants out but after five pairs in five days I decided it was going to get expensive.

Now it's the nappy bucket in the utility and soak for a couple of days. The pop through the wash as normal.

DH is not incontinent of urine (thankfully) although there was extreme urgency when he first came home from hospital. I got these for DH who to begin with was in a single bed in the sitting room:

amazon.co.uk/gp/product/B008645BP6/ref=ppx_yo_dt_b_asin_title_o02_s00?ie=UTF8&psc=1]]

I suspect it would be possible to stitch extension pieces to the tucks - one longer, one shorter, to make it so they'd tuck into a double bed with the protected bit where DH lay, if necessary.

The bed protectors were never actually peed on but it make both DH and I feel better knowing they were there.

As soon as DH learned to use the stairs (that was hard work - huge thanks to the therapists) we decided we'd both be happier if he came back to our bed and we turned the sitting room back into a sitting room. Our therapists arranged a fixed second bannister for the stairway to help DH - would that help your DH?

My DH can't follow TV programs very well - they're too fast for him. FOr this reason we're playing repeats of TV series that we have on DVD - we've seen them before, he can vaguely remember them and he can follow the story. For reading, put the subtitles on! It can help.

My biggest, hugest frustration is DH getting dressed. He's fine with getting undressed but unless I help everything goes on back to front, quite often both legs get shoved into the same trouser leg, and jumpers are on under T shirts. Both the wrong way round. And quite possibly inside out.

You'd think I'd be used to it. But every day I have to swallow it and help in a gentle friendly way. This is because if DH gets very stressed he's liable to have a seizure. So I spend my life making his as easy and stress free as possible. Did I mention about the jaw clenching??

Sorry flipflops, I’ve been a bit sidetracked I’m attempting to set up a small business which is taking a lot longer than I thought and is making me anxious again. And of course then you get so scared of being that anxious again, you get anxious!
I’m so sorry to hear Everything you are going through, it is a a great deal to deal with. A huge deal to deal with. Are you getting help? And some support for yourself? I had to be dragged out of a mental hole because I hadn’t safeguarded my own mental health - watch out!
You are also teaching me patience, I don’t always appreciate how hard it is for Dp and can get irritated when he can’t hear me or can’t take any noise, he can’t read very much now either.
It helps to think, like you, how far he has come. The journal is a terrific idea.
Dp wakes a gazillion times through the night too, now he listens to the windsors with no pictures just sound as he says the voices help him sleep. Unfortunately it means I sleep elsewhere!
Hope you are having a nice relax somewhere, have a good night, fingers crossed 💐

I don't actually feel all that stressed by it. I do get tired but that's my own fault for not going to sleep early enough I think being able to wfh in the mornings has helped a lot too - it keeps the feeling of normality since that is what I did before the stroke. I also meditate at night and that is an absolute lifesaver.

I taught DH to sleep through the night by using a very large SAD lamp. I read in the Mayo Clinic pages about sleep disturbance that using one of the big lamps close to his face for at least an hour during the morning would help reset his sleep/wake cycle. At the time he was waking, very confused about 14 or15 times a night and trying to get up thinking it was daytime. It's been brilliant solution. Ir took about 10 days to work but it means that we can still sleep in the same bed at the same time and that helps keep DH's stress levels down.

The consultant has put DH on epilepsy meds to help avoid further seizures. I'm hoping it works for him because it's not easy to so order his life that he avoids all stress.

You are doing amazingly well, that’s such a lot to contend with. Let’s have a virtual coffee!
Dp just totally depressed and blaming everyone, ok, me. Been a long day!

Oh goodness, I love coffee!! Black, hot and strong - it's all that gets me started in the mornings.

And - huge whinge here - I've had disgustingly, fiercely, horribly itchy eyes now for four weeks. The doc gave me some sodium cromoglicate drops but I find it difficult doing my own eye drops and I'm wasting so much of it! All I want is for the itching to stop. I wake up in the night scratching my eyes which are red, swollen and look terrible. Pity me! Send hugs, send sympathy.

And poor you - being blamed for an explosion in your DH's brain. Yep, I can totally see you delving about in his brain deciding which blood vessel to squish to cause a stroke ............ tell him he's a plonker! It's no-one's fault, not even yours, so blaming anyone just alienates them.

When my dad got bowel cancer (discovered late, inoperable) he didn't do the "why me" thing - he said "why not me" - such a difference in mindset. He taught me some wonderful lessons so that 10 years ago when I had my own bowel cancer, I knew how to approach it. DH is, to the best of his ability, trying to deal with his stroke the same way. Shit happens ......

I didn't mean such a difference in mindset from your DH, but such differences between "Why me" and "why not me".

Jeeze - oh for an edit button!

Does your DP like podcasts? They are wonderful for me and if your DP likes listening, they might suit him. And spoken word books - Audible - are brilliant.

Hello, I know this an old thread. I wonder how your H has progressed?

My H (69) had a stroke in Nov 22, so we are a year in. There seem to be some similarities.
My H had the same broken sleep problem which nearly finished me, it made me so disfunctional I was on my knees. I was interested to read I was not alone. I spoke to so many of his doctors & no-one said it was a known symptom.
A neurologist finally changed his epileptic drug & it fortunately helped before I gave up the will to live.
( He had some small fits at the start (Jan 23) initially they put him on Keppra changed to Brivact. If this helps anyone reading. I'm not sure if the meds have the same name in the UK)

Currently my problem is that I am with him 24 hrs a day, actually separate bedrooms but I still hear any night activity.
He is a completely damaged, but its really only me who sees it.
He can have a completely lucid conversation about things he did in his pre stroke life, & will seem quite normal
Counterbalanced by being unable to do up his seatbelt, put a coin in or retrieve it from a shopping caddy, get dressed properly, clothes inside out.,,,
Hundreds of tiny little things that put all together make him more like a 6 year old than a competent adult.
Recently he has become like a love sick teenager, wanting to kiss & sit by me constantly, a complete U turn from his pre stroke persona. Declarations of loving me, which make me reel at the diametric opposition from most of my (unhappy) marriage
Unfortunately he does not seem to acknowledge he is altered mentally

He can read, word by word talking out loud like a child, but I'm not very sure how much he understands

He is waiting, constantly waiting, all day, like a puppy for a walk. He sits & watches me.
I suppose this post is alot about my "saturation" & wondering how you are, & how your H has evolved.

If you find this post, do you know of any good forums for the "helpers"

Im sorry @Mix56 I didn't see your post.

Sadly my DH has developed vascular dementia and is now quite severely unwell. He is still at home (I renovated to install a disability shower, stairlift etc) and have bought a riser recliner fitted to his height, and a bed etc. He will be staying at home with me until he has utterly lost capacity to recognise me or his surroundings.

At the moment though, he still knows me and can interact (although his speech is very hard to understand) so he will be staying with me.

I totally get the inability to do things. Before his dementia my husband was able to discuss this inability rationally and he said it was like his logic circuits had been burnt out by the stroke. This really clarified things for me and I could understand why he could do things he used to do (memory) but nothing requiring connections to be made. This has gradually worsened and now I do absolutely everything - bottom wiping, teeth cleaning, food cutting - and we're reaching the stage where sometimes he needs to be fed. He has an adult sippy cup, eats with a spoon out of a bowl for all meals, and stands in the shower so I can wash him.

I have a private respite carer comes in once a fortnight for three hours, the chiropodist calls every six weeks and neighbours are very kind in running errands. I pushed the boat out to buy a powered wheelchair as we live in a town full of hills and indeed our house is halfway up a steep hill.

I don't know about any useful forum - haven't found one yet. I tend to talk to my respite carer who is very understanding.

I understand the clingy lovesick puppy bit. I get that too, from a man who was reserved and very undemonstrative before his stroke. Sadly, mine is still that way and it gets no easier. Mine apologises all the time, for everything. Coughing, sneezing, falling asleep, not falling asleep.

What I keep drilling in is that he has nothing to apologise for - dementia is a bitch, he didn't choose it, he doesn't want it and it's a crock of shit that has been dumped on him, but I point out is that we are still together and I still love him as much as the day I married him.

Last one, I promise - I read some stuff on the Mayo Clinic pages about sundowner activity and being very wakeful at night and one page said to try a daylight lamp. I got a really good therapeutic daylight lamp and he sits with that shining on his face for two hours a day. It helps him to only wake up about 7 or 8 times a night (the record was over 30 times in one night). He has Kepra for his mild epilepsy but his sleep problems preceded that drug so there seemed no point in changing it.

Hello, thank you so much for responding.
I hadn't got round to imagining the possibility of a long slow vascular decline, I'm so so sorry for you both.

Yesterday my H told my daughter I treated him with contempt & had sobbing episode. (This is because I told him that gripping on to me like a Chimp. was like a violation of my personal space. & if I have the right to refuse)
I was hurt but mostly angry that he off-loaded on our daughter, I've told him if he needs to talk he can see a Pychologist, but my life is one big sacrifice & I will not allow him to use Dd as a pawn.
If he shoves me any further to the precipice & I break he will have to go into an "institution". (Not my finest hour😞
I should grey rock & save myself the migraine I have today)
Today he is sheepish.

I have no help or respite carer.
I am sorting out his "handicapped status, which is hard to establish because he^^ can come across as fairly normal. Once the cogs have turned I may be able get some temporary respite, ( in local OAP residence, even though his (absent) family will throw their hands up in horror.
(Reading how things have crumbled for your H I highlights how I need to be prepared for worse)

We have been invited to his older brothers massive Xmas lunch, I would love to refuse, but it would involve a huge family riff & there are various joint financial reasons that if would be unwise to become the family whipping boy...
Ugggh

Please keep responding..if it helps !
Massive hug, we need it

Can I suggest that you urgently sort out PoA for both health and finance. You're going to need them and they take some 16 weeks to come through at the moment. This gives me the peace of mind to know that come what may I can instruct that he not be resuscitated (which neither of us want, and which we discussed thoroughly with our solicitor before the dementia was so severe). Also, I deal with all the money - goodness knows what would happen otherwise.

I feel so horribly sorry for him but pity isn't going to help him. I need to be quite firm sometimes and somehow to hang on to the fact that this is my husband, not my charge, not my child - my husband, and to treat him as that. It can be very difficult.....

Yes re. POA, unfortunately he is reluctant to do this, as giving me power over the finances will reduce the control he has over me ! after all I might even run away with his money !
I did drag him to the bank & make the necessary arrangements so that I can see his accounts & move money around.
He is not able to deal with any administration so at some point I will be saying he has to give me POA, pointing out clearly he is unable to do it so how does he think the tax return got filled this year ?

re his health, He has agreed for a no resuscitation in the event of a further major stroke, but its not in writing.
He does seem to believe that I want him to die when I ask him about this, like when I ask whether he would want to be buried or cremated, rather than just simply knowing his wishes.

Yesterday he sulked all day as I go to my friend's house on Monday evenings for a couple of hours of girl time. It should make absolutely no difference to him, except, he doesn't want me to have any freedom, (no changes from his former persona there !!!!)
I have explained that I will crack at some point & need some me time... not understood apparently

He does not see himself as altered...

Keep going to your friend - don't let him wear you down on that one. Sometimes it's these small things which keep us sane and able to cope the rest of the time.

Do point out to him that if he doesn't appoint an Attorney for his finances then if/when he goes gaga, the Office of the Public Guardian will take over his affairs without reference to him because once he's gaga it's out of his hands. Would he prefer you or some faceless civil servant?

My DH's speech is getting ever more difficult to understand and his frustration is huge (think of toddler who can't talk but needs to express themselves .....) At the moment he tends to burst into tears and I'm hoping he doesn't start getting angry about it. Still, cross that bridge when we come to it. If.

Hang in there - don't forget to look after yourself!

Just found you again and sending hugs. Sorry to hear you are having such a tough time both. Aneurysms are such a bugger!
We are still the same. It’s wearing, but not half as much as you guys. 💐

@Namebunny Just picked up your flowers! Thank you so much. Let's hope the New Year brings us the ability to cope with all we are facing :)