26.10.21 the day our lives changed

My Mum had a stroke (I don’t know what kind all I know is it was severe) on the 26.10.21. She has lost cognitive use and lost the use of her left side (her leg works but her brain doesn’t know it works so she can’t move it) she’s in a wheelchair now and housebound.
Before her stroke Mum was full time carer for my older Sister who is schizophrenic (we all live in the same house) I worked full time and I have my 17yr old with us as well.
As you can imagine my life is really stressful and both Mum and Sister bicker and wind each other up daily and I spend most days telling someone of as if I have 3 children not one.
Mum was my go to tech person and loved reading and cross stitch but she can’t work her phone, has lost vision so is struggling and gets frustrated with trying to read and was left handed so can’t do cross stitch either so as you can imagine she really frustrated with her situation.
As far as I’m aware there won’t be any improvement with her situation though whilst she was in hospital they told me she would improve but they told the ot that has been out to see Mum a couple of times that she wouldn’t improve.
I’ve found it all upsetting and stressful and worrying from lack of help with what benefits she can apply for to how long it takes to assess (she’s been home 6 weeks and we still don’t have any benefits sorted), I’m signed of sick from work but will eventually have to return or not work but both have worry attached, not work there’s the financial worry and going back to work there’s the leaving her at home with just my sister and a carer for 10/15 minutes every 3/4 hours what happens if she has an accident whilst im not there (im a worrier my brain always goes worst case senario).
Mums different personality wise as well, she’s doesn’t laugh at the things she use to, she doesn’t laugh as much either, she’s very emotional which then makes me emotional as im the cryer of the family. Apart from us in the house I don’t have any family near by, Mums Mum (my Oma) is Dutch and her Dad was Welsh so my family are in Holland and Wales. My Son is at college 3 days a week and then typical teenager of with friends or on his Xbox so I’m literally running around after Mum all day and playing mediator between Mother and Sister and moaning at at said sister and child to pull their weight with chores and then doing all the chores by myself as I get sick of hearing my own voice saying the same thing repeatedly.
I’ve left my house for a total of about 15 hrs since Mum came home on the 21 December.
Mum doesn’t express how she feels but I know I feel very alone and often wonder how I’m going survive this 7 days a week, 365 a year.
We are only 6 or so weeks in since she came home but I feel like we are at the start of a very very long dark tunnel though I try to be up beat and happy around Mum … sometimes it’s hard.

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Hi Sharanemichelle. What a dreadful position to find yourself in. Stroke not only affects the survivor but also you, as carer. It might help if you joined a local carers group so that you have some support. Please contact the Stroke Association about benefits and any help available to mum in your area. If she is over. 65 she is entitled to Attendance Allowance, but this cannot be claimed until six months after the stroke and depends on what help she needs daily. It might also be worth contacting Age UK and social services about any alterations you need to make to the home and other support needs.

Emotions are high after stroke and mum will be tearful, frustrated and angry. These moods should stabilise over time. Audio books might also cheer her up and replace physical reading. Never give up on improvement. She is in the very early stage of recovery. Encourage her all you can and look after yourself too. Best wishes.

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Hello @SharaneMichelle , Welcome to the forum. I’m really sorry to hear about your distressing situation but I think you will certainly find a great deal of help, advice and friendship on here. I can only echo the advice that @John_Jeff_Maynard has given about speaking to the stoke association to find out what they can do to help or advise (& the audio book idea). I have found them to be absolutely fantastic (along with this forum) and nearly 7 months after my stroke I am still joining their “Zoom Cafe” online chats every 2 weeks.

I truly sympathise and have some understanding of some of what you are going through as I grew up with a bi-polar German mother where I had to step up and help out once my dad left when I was 10. I know it is not the same but I certainly understand about having to live with someone that has a severe mental condition and also not having family to help out. Funny to hear you use “Oma” as that is the same word in German for Grandma.

I am also left handed like your mum and lost the use of my left side (although I am now able to walk and use my hand with both hand and foot numb). It is still very early days for your mum and whilst you may not see huge improvements, things like emotions will settle down (I was all over the place for a 2-3 months after). I also developed bad anxiety about 3 months in where I found it impossible to focus on anything. This made me very irritable and I needed my wife to remind me to do everyday things.

It is so difficult for you having to be a carer for both your mum and your sister and people are often not sympathetic to those having to look after others. Please remember to use this forum if you think it helps and please feel free to message me anytime and I’ll do my best to help with any advice or experiences I can. I know you must feel so alone but the remember we are here for you :heart_eyes:

Best wishes,
Mark

Hello @SharaneMichelle, stroke does tend to throw a rather large spanner in the works. I’m sorry that your mum has now experienced this. I know it is tough on carers at all levels, stroke can be an awfully condensed period of “selfishness” for the survivor, and this can leave family members having to pick up the slack. From my experience, I was out of action for six months, leaving a lot of responsibility with my partner while I sorted myself out. It has been a tough year for her too. Your circumstance sounds quite manic, I guess sitting down and working out the best routine possible may help, I have found routine to be invaluable as I recover. What I do know is that the person who said as an absolute that your mum wouldn’t improve cannot make that prediction. Stroke is very much an individual injury, and improvement should be gently attempted but should have realistic expectations. Your mum is very early on in her recovery, it’s only really been three months. Her brain is even still repairing itself as much as it can do, things haven’t settle down yet, there will be a lot of fog and still brain shock to contend with.

Stepping stones are useful in recovery. Improve one little aspect at a time, and work on that until satisfactory. The first might be to have her smile and laugh again, even a little bit. It sounds hellishly incremental, but a stroke survivor’s time perception changes while the rest of the world moves on at its usual pace. For the first six months I watched a bit of telly but found it difficult (I even had to get up and stop watching regularly to go and rest in bed), a year later I can watch a suitable programme easily, and look forward to it as a way to relax.

A good method is to have a recovery chart on the wall. This might have activities and rest periods for your mum, so everyone is clear what is going on hour by hour. I never used a recovery chart but I know of other survivors who used it with efficacy. It can also help pace fatigue levels. I hope other carers on the forum can offer you more broad advice, and welcome to the forum, I hope it provides some useful tools in your carer belt.

Hi sharanemichelle Our hearts go out to you and I’m sure there must be support for you out there, you should not have toFace this alone. My Mother had a severe stroke and after six months made Good progress in some areas most importantly her sense of humour and was , able to read again. She never got full mobility back and at 81 had to go into nursing home but stayed positive and enjoyed the remaining years of her life another 12 years. Because of your workload and other pressures make sure you stay with us you’d be surprised by the wealth of experience and knowledge found here and now that mental health issues have at last been highlighted make use of what services are available to you, you must stay strong for all of you. Pds

Hi,
I had a stroke in 2014. I lost the use of my right side (I’m right handed) and I remember the frustration of not being able to do anything and relying on others (mostly my husband). It makes you miserable and depressed, and you lash out at the people who are your carers. I too had an OT who told me that my hand would probably never work again, which was mentally a massive shock. It was very unprofessional. They are not able to make such predictions (and even if they are, it can set back recovery to voice such opinions). One thing I learned is that no one offers help unless you ask for it. Get advice from The Stroke Association, speak to your GP (about you and your mother). Your mum needs to get physiotherapy (her recovery will probably require this). If she has a library membership, audio books can be obtained online. Set up her mobile phone for voice activation.
Finally, she is in the early stages of recovery. Things will get better. Her brain is still recovering. I have learned to cope with my disability. There is usually a ‘work around’ for most tasks. I can even sew one-handed on my sewing machine and using clamps.
Hang on in there!

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Thank you everyone for your insights and advice.
Mum was the technical person so it’s taken me this long to work out how you reply :see_no_evil:. Haha. Odd I know but she loved her mobile so if I couldn’t understand something she was my go to gal.
I’ve looked at groups etc but there’s nothing near to us. Mum is housebound and I don’t drive.
I think my only real concern is when I eventually return to work as I will be out the house for up to 9hrs and not sure how relaxed I feel leaving Mum and My Sister together in any capacity as they seem to enjoy winding each other up. :woman_shrugging:. I’m off for another two months at present. I’ve quite a few friends who let me vent my frustration over the phone … I’m sure they see my name appear and think oh no but they answer and My Son has seen how much I’ve had to do as I was dog sitting yesterday and today (I got out the house :smiley:) and left him with Mum and his Aunt so this evening he has been much more responsive when I’ve called him to help me. Haha Oma and Opa are words I normally have to explain when I was younger I got use to calling them OmaNan and OpaGrampa as no one knew what I was talking about outside the family :grin::heart_eyes: .

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Hi All,

I have never posted on here, and to be honest I am not on any social media, so do find this all a little new but here goes and here is my story.

My name is Darren and are 45 years of age, I have a supportive wife with two typical active boys of 4 and 9. I was genuinely active and healthy, or at least i thought i was until the day i had my stroke coming completely out of the blue.

I was about to play golf, and suddenly felt like my arm and whole left side lock up, to cut long story short i ended up in intensive care, and in the local infirmary for a 5 week period, it was tough, as this was last May during the height of Covid, we had moved from the Midlands back up north, and our boys couldn’t visit me, but I am a very stubborn, strong willed and a positive person, so after been told i may potentially never walk again, I have worked hard and are now walking, and back to work.

I am now struggling mentally with the last 10% of recovery, finding i am getting very frustrated with myself and getting emotional often, which i didn’t do pre-stroke, apparently the area i had the bleed (left side) affects your emotions,

Any advice or sharing of a similar story would be a big help i think.