Family

@joy.alliy has inspired me to write a little about family dynamic after stroke. I have four boys and a partner, my mother-in-law lives in a flat next to us, and my partner’s brother lives across from us. It’s a pretty close circle. Other extended family live not so far away. My family, however, are spread over, the closest being in Brecon. The number one factor in what has changed in our dynamic is that I have a brain injury. My partner, bless her, has been very stoic, she’s not mollycoddling by any stretch of the imagination. I had to get up, get my own food, tend to all my own arrangements, and was never offered a cup of tea. I kind of like that though, because I had to fend for myself within a safety net. Instead, I thought, what can I do for her? Within my limitations of course, but it would make the relationship stronger after stroke.

Extended family members were a different kettle of fish, they put a lot of extra expectation and stress on my recovery, and I am sad to say I embroiled in a lot of disagreement with them. Maybe this affects younger stroke survivors more so because they are still in the flurry of familial life’s dramas. Youth tends to give energy to this sort of malarky. However, I can’t be around any of my in-laws at this time. I have closed that curtain for now.

To give an instance, because it is always relatable, my sister-in-law asked my partner if she could look after her two dogs, indefinitely, as she had to work full time. Normally this would be like water off a duck’s back, but I was only a few months into recovery and the addition of two dogs in the house were at first pleasurable but after some time, having to take them for walks and toilet became arduously trying on my fatigue levels. I am a cat person, and during that time I never saw my cats for the dogs were always present. My cats are comforting, loving creatures that give me great pleasure, without them around I felt at the mercy of bounding, playful creatures incompatible with my lifestyle (my cats always hid when the dogs were around). So, I brought this up with my sister-in-law, and stupidly said that busy people “shouldn’t have pets”, well I guess I think that anyway, but before my stroke I wouldn’t have said it outright. It caused a major havoc in the family whisper machine and I was accused of saying something horrendous to my sister-in-law’s children (i.e dogs). Before my stroke, I would, and have had, looked after other people’s pets willingly but I couldn’t manage having them around. It’s not that I didn’t like the dogs themselves, I just couldn’t cope with all the stuff that comes with such a needy animal. This caused a massive rift, and I am still working on repairing it.

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Thank you @Rups for speaking out more about your experiences with family Post stroke.

When I think about all the things I had to endure and put up with, I start to cry asking myself what did I do to deserve it. Was I not worthy enough to be afforded some empathy by my own family.

As soon as I got home from the hospital my father and sister cornered me when my partner was out doing grocery shopping. They convinced me that my partner was trying to take advantage of my condition and my money. So they made me surrender to them my bank cards and they called my banks to freeze my accounts. Anything is possible in Africa if you have some influence. So whenever I needed money I had to ask my father. At age 42.

Because of the African culture and my religion I was not allowed to use my non dominant hand (left) to feed myself or write. My father would visit me every day and shake my limp right hand and ask me if it was working yet.

The shame and taboo of having a disability, meant that I wasn’t allowed outside and to go places. Fortunately I can be very defiant if need be, so I asked my partner to take me with him when he went out, and used my left hand which made me more independent.

My father didn’t like this. He had already told people that I was out of the country visiting my partner, when we were in the city. He then changed the story and told people that I was sick but would be well in a few weeks time.

Resting hours were not respected as they couldn’t be expected to visit me at times that were not suitable for them. Counselling was discouraged as it was seem as a sign of weakness, and is not the African way. I was constantly being weighed since I had lost a lot of weight, but the family failed to take into account that I had dysphagia. My sister even tried at one point to make me eat solid food which I was still on blended food. She was totally unaware / disinterested in the fact that I could easily choke as my throat muscles were still weak at the time.

The worse was when my father’s close friends found out about my stroke when I leaked photos of me in hospital on my WhatsApp status. He was livid and I told him it’s my story to tell and if he was ashamed of me that’s his problem, not mine.

The need to keep me under control got to the extent where they asked my partner to have a word with me to keep me in line. When that didn’t work they tried to manipulate me by making me chooses sides - him or us. They couldn’t stand that a Scottish guy who has no prior experience with survivors was able to understand what I needed, which was love and compassion.

The relationship with my father, sister and 2 younger brothers got worse and none of my siblings were willing to defy my father for fear of losing financial favours.

When Christmas 2020 came that was then the relationship finally broke down when my partner briefly returned to Scotland to be with his family. My family wanted to go out and celebrate but I was still suffering from fatigue at the time and dysphagia. I preferred to stay at home and expressed my wishes but they completely forgot my condition. I was becoming a burden to them. They chose to give me the silent treatment and wanted to reduce my physio sessions.

In March 2021 my partner decided that I was no longer in a safe and nurturing environment so we left the country. We had to pretend to the immigration officers at the airport that we were going away for 10 days in a neighbouring country, but had to intention of going back.

Having suffered PTSD earlier in my recovery, I didn’t realise I would also have to deal with another trauma that would have easily been avoided had my family not been so interested in preserving their reputation at the risk of damaging my mental health.

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@joy.alliy , I am so sorry your recovery has been hampered is such a traumatic way.
@Rups , Thank you for sharing! Your story is familiar to me. As I have now officially lost my drivers license due to a vision field defect I was becoming quite reliant on family for help but I’ve had to let this go as my limitations were not being respected and I was regularly having to go too far into my fatigue to recover quickly.

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Unfortunately, Rups, too many people think of stroke as a recoverable illness and that those affected can carry on before. I had several demanding voluntary roles before my stroke and others in the organisation assumed that once out of hospital I would pick these up immediately. After several weeks of receiving mail I didn’t want to deal with I had to tell them I couldn’t carry on. Yet still the mail kept coming.In the end I just binned it.

My partner fully understands my situation, but some old and trusted friends gave the impression I was feigning the many after effects we survivors have to deal with. Human nature is not always as we expect it to be.

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@Rups @joy.alliy @John_Jeff_Maynard . hi Guys it makes me so sad how we are treated by our families. I have a story to tell but it upsets me to much so I push it to the back of my mind. I’m sorry for all of you, life can be unfair. Families see us as before once we are up and about. I’ve found I’m still expected to resume my normal role and place in the family as mother, wife and grandmother it’s sometimes infuriating. I wish you all well and carry on recovering. Positive thoughts and care. Loraine :heart::blush:

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Hi @Loshy families can be very hurtful at times.

At first whenever I told my story I would break down in tears. I still do sometimes but it’s not as bad as before. It’s like the more I talk about it the less traumatic it feels until one day it will become just another story.

That is what I learned when I was doing EMDR sessions for the PTSD. You keep talking about the traumatic event until the brain becomes desensitises by it. As the old BT advert says “it’s good to talk”

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Hello @John_Jeff_Maynard, yes, I am sorry to say I have had other stroke survivors tell me the same thing. It’s a worry, and I regret to say, not very humane.

Hello @joy.alliy, aye, that sounds quite traumatising on many levels. I imagine cultural nuances can be challenging. It’s a precarious balance between family members who are caring, over-caring, dismissive, or domineering. I have a bugbear for micromanagement, which many family members, direct or extended, will do without thinking. There’s a lot to reconfigure and process after stroke without needing to parry with uninjured brains at the same time.

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Rups, it’s partly ignorance about stroke and partly a wish on their part to see you as you were. It’s also partly indifference and you realise some people you thought of as friends were never friends at all.

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Hi all @Rups @joy.alliy @John_Jeff_Maynard @Loshy @Alis , I meant to reply to this when it was first posted but have been busy and also pretty fatigued recently.
I can relate to some of your points and agree that many people assume we will fully recover so why don’t we just ‘pull ourselves together’. I guess I may have been in that camp myself before I became an SS. Same with anxiety, I had no sympathy before getting it severely post stroke. So I guess I shouldn’t expect sympathy from friends and family :grinning:.
However I found it quite distressing reading @joy.alliy 's account of her treatment. I guess that’s a culture thing but it certainly puts things into perspective.
From my point of view I have to say I think it has strengthened my relationship with my wife. We have been married 25 years and probably took each other slightly for granted, but now are much closer and try to enjoy the present as much as possible rather than living for tomorrow.

Keep smiling everyone :grin:.
Mark

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@Ingo66 hi Mark, it makes it all worthwhile to hear your words and your relationship strengthened. I wish you many more happy years together. Best wishes Loraine

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Dear Mark,

I think my mistake, having spent my formative years and further education here in England, was that while certain cultural beliefs are a part of one’s history, education should supercede culture when necessary.

Both my sister and brother went to Ivy League universities in the USA and my father has an master’s in civil engineering from Glasgow University. We are all well travelled and have been exposed to the western culture from a very young age.

Sadly many families still cling to the African culture and norms to the detriment of other’s mental well-being.

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Dear @John_Jeff_Maynard I kind of excepted to lose those who I considered as friends at the time. It had already happened before when I lost my mother to pancreatic cancer.

One old friend from uni even suggested we go on a girls trip to Dubai without even asking what state I was in at the time

What I didn’t except was the level of support from those I had previously considered as acquaintances, a few very close friends and my partner’s friends. Those are the ones that matter in the end.

So now I have rearranged my “circle of trust”.

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Hi John, i think i fell into that camp after my first stroke, give it a couple of weeks and i will be out training again running, cycling gym get my upper body strength back how wrong I was, afternoon naps were what i enjoyed plus my wife didn’t want me training but iI did say it would be good for my mental health.

The second stroke I have started running more for mental health issues but still suffer with fatigue but it seems my wife doesn’t understand why although i do say it s the stroke.

Hi John. I have also had a small second stroke. I nap every day at noon, but am aware that this might be now a habit. The nap does get me through the rest of the day though. Unless you’ve had a stroke it is very hard to imagine the mental and physical upheaval stroke creates. Obviously, I wouldn’t wish a stroke on anyone, but it does lead to a sense of isolation.

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