CareGiver Needs Care too

So it all began in October 2023, when my husband had a massive stroke in his young— out of nowhere.
Later, the cause was established as Neck Artery occlusion, and that clot traveled to the brain stem, causing blood supply blockage to his brain. The doctor performed a thrombectomy, and I am so grateful to God and the doctors that saved him; however, he lost half of his vision field (homonymous hemianopia). Since then our life has changed. Many restrictions crept in, and new normals were established. He can’t drive, which he liked so much. A lot of ups and downs happened in this journey.
Now again, his progress halted when he started having seizures in Dec’24.
Again, I am gathering him and myself while I am working as a woman and have a teenage son to take care of.
In this duration, as a caregiver, I realized that very few people would understand that a brain stroke happens to a family, and the caregiver needs care too. I survived most crucial times by being on anti-anxiety pills, and I have lost the sound sleep that I used to get in the night. My heartfelt thanks to all known and mostly unknown people that supported me mentally and emotionally and heard me unconditionally; they were God sent. Just hoping that his seizures will be in control and that he will be back on an upward trend in his recovery.

So, as a caregiver, please remember to take care of yourself as well. Your good health, along with strong willpower and faith, will keep you going.

To all the good times that will embrace us soon :slight_smile:

Regards,
-Neha

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I have si much respect for what you are doing. I only know it from the other side. I am so grateful to the people in my life who support me.
I sometimes see posts on here asking how to support stroke survivors and their families. I would suggest sitting with the stroke survivor for an hour to allow the carer to get out or to take round a ready cooked meal

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Different Strokes charity have regular Zoom meetings for carers. Here’s a link to more info. https://differentstrokes.co.uk/virtual-meetings-for-carers/?fbclid=IwY2xjawIum9BleHRuA2FlbQIxMAABHSSQIt9mBQjMbM6xS9_2EZRR7uYqXg9DvRyVb6E2wKCLKM-LanY6VeBk9A_aem_vl_vOT1RPIz50vlkh6tLcQ

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@mishraneha1808 thank you for sharing your story. I too have the utmost respect fir anyone who is caring for someone whether that be as a result of a stroke or any other illness. You’ve certainly had your work cut out & such a shame thar you now have seizures to deal with too. Hopefully they will get the right mix of meds for your husband so the seizures stop or at least significantly reduce.

My advice would be if people offer you any help then take it. Make sure you take a break from caring & so some things you enjoy too. Batch cooking is useful as this can save time on days when you are pushed or just don’t have the energy to cook.

Wishing you all the best

Ann

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Hi, Firstly I would like to say a big thank you to everyone who is a carer. My husband is my carer and I thank god every day that he has been by my side since my hemorrhagic stroke in 2017 which paralysed my left side.

I’m always trying to get him to spend some time doing something he enjoys. He often meets up with his friends and plays golf occasionally. He works 3 days a week and that gives us both some time apart and gives me some independence. As others have said, if someone offers to help, please take it. Even an hour or two here and there, will be good for you.

I hope they sort out your husband’s seizure medication soon and that things will be a bit better for both of you.

Best wishes and regards to both of you.

Regards Sue

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Hi Neha - Thanks for sharing your experiences with us and for reminding us that CareGivers need care too :slight_smile:

With regards to husband’s seizures,

I am happy to share with you that in our case, these seizures came and then a few months later they were gone (forever). Initially we were quite scared and worried as at that time we were new to stroke care and the situation was similar to yours, i.e. probably a year so after the stroke. After a while we got “used” to it and didn’t worry about it - we were told that it is not unusual for some stroke survivors to have fits/seizures, and that these are caused by neurons mis-firing in the brain as it tries to rewire itself. We have been told a lot of things and to be fair they don’t all apply to us, but that’s fine :slight_smile:

Hopefully, your husband’s seizures are now something you understand and accept, so it is a matter of time before it all settles either medically or though natural brain development.

You’re doing very well considering you being a carer for your husband, a mother to a teenage son and holding down a job - well done :clap:

To all the good times that will embrace us soon.

Namaste|
:pray:

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Thank you for all positive thoughts :pray:
@ManjiB if, was your mom ever on anti-epileptic medicines for seizures?

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Thanks @pamelai1, do you or any other folks out there know of carer support sessions that aren’t scheduled for during the day, for carers like myself who also work full time?

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Sorry i don’t know of anything happening on an evening. The Different Strokes Zoom meetings do vary their day and time but they’re currently all during the day.

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Thank you. Hoping to find something for one evening. :slightly_smiling_face:

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Neha @mishraneha1808 - anti-epileptic medicines were prescribed for Mum after she had a fit/seizure and we took her to hospital. She was diagnosed as having hyponatremia which is caused by low levels of sodium in the blood. Her sodium was below the minimum safe levels at the time of admission i.e. when she had the first seizure/fit.

NOTE: In this post, I have substituted the word [c-o-n-sultan-t] with [specialist/expert] as I was not allowed to use it is it used in everyday language.

Just for information : Hyponatremia is more common in older adults because they’re more likely to take medicines or have medical problems that put them at risk of the disorder. At the time Mum was on other medications as part of her ongoing care plan. The [specialist/expert] told us to stop using one of the meds (it was a BP lowering medication) as it would contribute to lowering the blood sodium. In our case, her having a seizure was a blessing in disguise as it meant we were able to stop using one more medication which we believed was not necessary or appropriate for Mum’s personal health condition. I stress the personal as this is very much our view.

As I recall, it was explained to us that the seizures are something that happens to some stroke survivors and its likely cause was the low sodium in our case. As she was admitted due to fits/seizures the [specialist/expert] prescribed the anti-epileptic medicine (whilst at the same time asking us to stop another medication that was already part of her ongoing post stroke care plan).

A little important aside, for information if you're interested - click here to read

Personal view - you do not have to accept or agree.
Please note and this is important - here we see a conflict between two [specialist/expert]. This may not come across very well in this post as it cannot be easily discussed or any misunderstanding can be explained, but it is important for me to mention that there have been instances where there has been a conflict (my term) between [specialist/expert], whereby one prescribes one medication (in this example, BP lowering meds) and another prescribes an anti-seizure meds at the same time asking us to stop taking the BP lowering meds. I mention this because we deal with specialists - these doctors are specialists in their field, but do not necessarily have a detailed understanding of other (often related fields) and so it is not unusual to find contradictory information/medications being given). I had previously asked for Mum to be taken off the BP meds (before the seizures) but was told that it is better to keep her on it (specialist 1). Then at a later stage specialist 2 comes along and at a stroke (no pun intended) of a pen stops it. Where is specialist 1 now? And will he put Mum back on the BP meds.

We did our due diligence and read up on the condition, likely cause, prescribed medication and importantly the effectiveness (or efficacy of the treatment), associated risk (side-effects) and concluded we would rather not use the medication as a preventative aid. This was our decision based on our knowledge and beliefs and Mum’s historical choice to avoid medicines (other than natural traditional “grandma knows best” aids), and it not a recommendation. - you should do your own research/assessment and then makes your choice.

Following this episode, whilst Mum’s body adjusted (being taken of BP meds) and being given a half teaspoon of salt in her daily fluids to help maintain sodium levels, Mum had a few more seizures which we manged by helping calm her down and following guidelines of keeping her face down etc.

Within six months of this, the seizures stopped. Her BP is fine and her sodium level remains safe and is quite healthy as at the most recent check (last week as it happens) and we continue to give her a half teaspoon of salt in her daily fluids to manage this.

All things considered Mum’s obs are amazing for someone of her age.

She seems to have become a bit dehydrated since the last check (we get her checked regularly - every 3 months) and we believe this is down to her becoming more active, burning more calories and sweating out more. So we will monitor the sodium (sweating out) and have increased her daily fluids by 120 ml or about half a mug.

Hydration - very important. Always watch out for signs and take action. Drink water or other fluids.

I hope this rather long answer helps. In summary, yes, Mum was prescribed anti-seizure meds but we never used them for reasons detailed above. This is not a recommendation, it is just what we did and what works for us.

Namaste|
:pray: