I know forums are great, but when you’re autistic, dealing with large, faceless organisations is pretty intimidating.
I get sent lists of organisations, but they all seem so unwieldy and quite scary, and I never know what to say or ask, or even what I;m supposed to be doing (or not). My partners family, bar her son, live hundreds of miles away, and I spend my life either not sleeping or looking after myself properly, worrying, visiting the hospital (Shortly to be very curtailed) or dealing with a mountain of medical appointments to be cancelled on her behalf, and text/call/mail numerous friends and employers who I don’t know, with updates on her condition (which I am unsure about till she wakes up and can be properly assessed)
She seemed a bit calmer yesterday, less agitated when coming out of sedation, recognised her name when called and seemed aware that I was there. There’s talk of a tracheotomy so she can breathe more easily (a good thing), and they say she is stable so I guess that’s good. Finally saw her scan which looked scary, but meant little to a layperson because I can’t differentiate between the sight of the stroke and what might be damage or bruising and apparently (bizarrely) they can’t compare the scan with her earliest ones because they aren’t sent them by the other hospital.. which seems very strange to me.
Aw, 2weevils I am so sorry to hear about your partner and hope the she soon recovers from this terrible time. However, I know what you say about not knowing what to say or if you’re right or wrong, but the Stroke Association can be a very helpful and supportive group we are not judgemental for anyone. We on the forum try and offer some support to those that have had a stroke and those that are dealing with the outcome. It is a scary and frustrating experience for all. I am 23 months post haemorragic stroke and I am still recovering and trying to get my legs working again after eventually regaining most of my rightside, but its a long slow process. Don’t give up and feel lonely, there are people and places who can help you both. My husband is my full time carer and I know that I feel a burden, but we do learn to live and adapt to the “new” version of us. I wish you both well for the future, but should you want to shout and have a moan, I’m sure we would all accommodate your frustration and listen to you and your feelings. Just accept what is now and know the strokeassociation is a point of reference and help for us all. Take care and very best wishes.
Thank you. I am pleased to hear you are progressing. My partners stroke is ‘significant’, but I assume that most of them are. They are doing a tracheostomy tomorrow to help her breathe, and hopefully the benefits will outweigh anything else. I am so so scared.
Hi @2Weevils you are trying to deal with a lot at the moment & maybe you need to take a bit of time to work out what absolutely has to be done & what can wait. Updating friends for example could wait although I appreciate they want to know because they care but other things take priority at times. Maybe one message to them to say you’ll update ince a month or perhaps a group chat so you only have to message once.
There does sound like there ia some positive progress though. Recognising her name, less agitated, knowing you’re there etc. There is a long way to go yet but anything positive is a good thing.
And yes you’re right loneliness does suck. We are here to listen when you need us to be. Perhaps also make time to pjone your family or a friend from time to time too. It’s very important that you look after yourself & take time out for yourself too.
I know it may not be much consolation but at times of emptiness or facing issues that find me feeling as if I am alone in the burden of it, I think about all the hundreds of thousands, if not millions, of people going through similar feelings and then I realise I ought to fill up my time as best I can. A poet once wrote, and I am paraphrasing, that there is an art to being solitary in a crowd and also being able to people one’s solitude. The latter doesn’t mean having people around but instead filling one’s mind and thoughts with conducive company; music, reading, television, films, plants, pets, hobbies, musings, movement, ironing, bathing, rest and relaxation, laughing, quietness, &c.
@2Weevils - firstly, so pleased there are good signs from your partner.
Secondly, loneliness does not have to suck.
You can talk to people on the phone or on zoom etc.
You have options - call the Stroke Association, The Samaritans …
You can join the WhatsApp groups that members of this forum have set up.
I appreciate things are difficult, but help is out there and in the end you do have some control over this i.e. you can pick up the phone etc.
I hope today goes well for you and your partner and her breathing is more comfortable once the procedure has been done. Don’t feel lonely, lost or afraid, there are people who can help and guide you. Talk to her dr’s or stroke team and remember the SA and this forum is hear to listen to you and to offer help and support if we can. We’ve all been there, and yes most of us are still recovering, but we understand what you are both facing, and hopefully, once the initial shock recedes a little, life will look different but hopefully will also show you some light
Can you answer the phone if it rings. Or is it making calls. Or both. Or is it the speaking to strangers that’s difficult?
Or it can be the whole thing and I can relate to that. I have mild aphasia, though for the first year or two I virtually none verbal. As speech progressed, naturally I got better at using the phone. A phrase I often used was “I have aphasia. You talk, I’ll listen. And I’ll answer if I can. Be patient”. I had those words on a bit of paper by the phone for those times when family weren’t available to take the call. Of course it was easier with family and friends who knew my predicament.
But talking or just listening to others can alleviate of the pressure on you. Just talking your problems through, using people as a sounding board can help you get things a little straighter in your head…alleviate some of the pressure building up.
The reason I’m asking all this is if the Stroke Association were to call you, would that be difficult? Because I’m thinking you could be matched up with one of their one on one volunteers for a once a week chat if you’re interested? I’ll just tag @Anna_Moderator in as she is with the SA and might be able to get the ball rolling for you if you are interested?
Thank you, yes. It’s very much a combination of things- the unexpected, the spontaneous, the small talk etc- all befuddle me. But if I know what’s happening and why somebody is calling then it’s a little easier
@2Weevils Lorraine mentioned about a service that we have which is a weekly call with a volunteer. Our volunteers are either stroke survivors or carers of stroke survivors. They will call you on a day and time that suit you at the same time each week. The calls last for 30 mins for a total of 8 weeks. You can use these calls to talk about the things that are important to you. If you think our weekly calls could be helpful for you, you can sign up by filling out our sign-up form.
Forwarded is forearmed so to speak. And that’s what I was thinking. So why not sign up for the one on one chats as Anna has mentioned above. It could be good for you to chat with another carer. And if they are made aware of your autism you could lead in the conversation. Sticking to discussion of partner’s condition and what help you may need. I don’t know for certain though, you may need to different department within the SA for that.
My wife is in hospital at the moment recovering from brain bleed and has to learn how to walk again before being allowed home. We talk twice a day via mobile phone and that is keeping me alive. One other thing I have is the ability to use the computer to meet other stroke survivors via Minit chat. Biggest problem for me is the time for chats which is tricky. I am on New Zealand and the chat hosts are in USA so my main time for chats is 7am! thats a tricky enough time for me and would be in the early hours of the morning for you.
To me it is worth getting up early for, every one is friendly and accepting of handicaps.
It would, but I can’t commit due to constant trips back and forth to the hospital. I don’t know from one day to the next where I will be or what I will be doing, so it’s hard to commit to what is required.
It’s nice that you are able to get up early so you can chat with other stroke survivors @Deigh . These must be difficult times for you and anything you can do to help yourself has to be good.
Well done for making the effort to get up early.
Wishing you and your wife all the best. Sending love and hugs to you and your wife.
Latest word from the Hospital is that it will be three weeks! Well, I am surrounded by people living on their own so I will just have to find out how they survive without company.
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