You are at the beginning of a long journey. At first you have so many questions. You couldn’t possibly absorb all the relevant information at once and you are probably best simply taking one day at a time.
I could say much but I will add that we on this forum are very concerned for you and wish you well. This is a good place to ask questions and share your feelings.
Both here and in hospital ask those questions that spring to mind, say what you feel. There are no right or wrong questions.
I had a stroke almost two years ago, it has been a varied experience with ups and downs for both myself and my wife.
Despite all this, life is worth living and others in the same situation sharing their experiences is a great help when facing challenges and also when celebrating successes.
Christmas is not the best time to be facing all this but I am going to wish you a happy and rewarding future in the New Year.
@Bobbi
Thank you for your response, this last month has been difficult for me and my siblings and earth shattering for my Dad - he is of the age where the wife does everything and adjusting to me moving in has had its challenges (and arguments) for us both! I am going through the process of becoming her deputy as she has no power of attorney appointed, work has been really good with my hours but I have to go back to full time in the New Year and i am constantly worried about how my Dad will cope whilst I’m away as I’m not local to him. The doctors have mentioned that she might be best in a Neuro rehab centre but having googled it seems that they are not fully funded and we might have to pay for it, I’m just consumed with worry about my Dad (who is stubborn and will refuse help), about my Mum who was so full of life, loved her allotment and now struggles to recall my name (remembers my brothers names without issue) and the amount of money it will take to keep her safe and well…
All of your concerns will be something you will work through. When the holiday season has calmed down a call to the Stroke Association will help you begin to deal with the challenges you are facing. You will be able to discuss, practical matters, financial concerns and what to plan. There is so much and letting things sort themselves out will be the only way forward at times.
Don’t wear yourself to a frazzle trying to micro manage everything.
Be there for Mum and Dad but take time for yourself, if you aren’t rested and well you’ll be no use to them.
Others will add their bits to what I have written, you will find we each have a different way of seeing things, all useful but possibly overwhelming at times.
Back to funding, don’t just throw money at the problem, you can get help if you ask so before jumping in try to discover your entitlements. Get help making claims, it can make a big difference.
There could well be help for your dad and an allowance for both his and your mother’s care. It is well to get claims in early as it can take a while before funds are released. Again, discuss all this with the Stroke Association.
The three things I would echo are: You cannot absorb everything at once, and Time has a way of sorting out the priorities. So give it time and most important - As the primary care it is crucial that you look after yourself by taking all the support you can get .
There are many words written by the forum members that may help you, but to give you all the references now is likely to overwhelm .
It has references within the stream of posts and it will show you how over some months things clarify.
Everybody’s journey is different, which the medical profession will tell you all the time as being the reason they can’t say anything useful, but we know that the normal journey is for there to be improvement. What we can’t say is what will improve in months weeks or years. The first 6 months are likely to see the fastest improvements. When you have more capacity to absorb we can point you to further explanations
Stay strong and look for peer produced support - it has understanding lacking in professional commentary
@Bobbi@SimonInEdinburgh
I’ve been told a lot over the last few weeks to look after myself but it makes me feel like I’m being selfish, I sometimes ‘take a night off’ and go to my home which is a few hours away from where my Dad lives but inevitably spend the entire time messaging him, updating family/friends or googling stroke related information. I guess I’m just struggling to see a light at the end of the tunnel, for me, she isn’t improving, my Dad fainted at her bedside yesterday (he’s fine, low blood pressure, I’m making sure he has plenty to eat before heading to the hospital today) and she didn’t even register that anything had happened.
You have a marathon to run. In six or 12 months you’ll be glad that you saved your energies when you could because you will definitely need them later .
Stroke is unlike a broken arm, pneumonia or even cancer. You don’t heal up in a few months and return to the old normal. Your mum and dad have a new normal now and the quicker the denial ends the quicker acceptance and accommodation can start to to be used .
If you are like most of us you won’t get the answers you need from the medical profession but from the community. Therapists are experts in a fraction of the new reality. They mostly only truly see the survivor (and then without visceral understanding) not all those affected.
You have the big challenge - integrating all the needs that make up the whole until your mum and dad can start to take some of the load - if indeed they will be able to.
I know the other topic that I pointed you to is a couple of hours read but it will show you somebody’s journey As they experienced it over some weeks. There are other similar threads that you will probably need to read to get a more rounded picture But this is a good start. Not directly relevant but you might also like the 4 minutes of YouTube in the post Laughing - #14 by SimonInEdinburgh
Prepare for a long haul, and have faith
that the many folk on here who have gone befor you Have found that things to do improve, that you can’t anticipate all that you have to know, that researching everything is exhausting and unnecessary because what will be relevant cannot be predicted yet
@CatherineT hi & welcome to the forum. Sorry to hear of your mums stroke & aneurysm. You will have many many questions and my advice would be to write them all down so you can recall them when you have the dr meeting.
A few questions will probably be around plans for her treatment, what therapy will she be getting, funding if they’re planning on.moving her to care facility or to nsend home with carers. What things can you do to help her recovery but please don’t commit to anything as if you offer too much they’ll leave you to get on with it. Maybe ask about speech & language therapy too & also why she appears to have regressed.
Progress in the early days can go backwards so it might not be surprising that your mum is a bit worse. Fatigue is a big issue post stroke and whilst you might think she’s doing nothing to being it on even just having a conversation is exhausting after a stroke. The brain has a lot of healing to do and this requires it to rest loads.
As the others have said you must look after yourself too. You can’t help your mum & dad if you’re exhausted. Can your brothers take on some responsibility too?
Hope the drs meeting goes well. Wishing you all all the best.
@Mrs5K - thanks for the suggestions! Yes, the fatigue has hit her hard, especially since she’s started having regular physio sessions so she’s typically asleep for the majority of the time that we are at the hospital! My brothers have been helping but I’ve just jumped into ‘mum mode’ to make sure things get cleaned and people get fed. If I stop too long to think about the situation it just makes me desperately sad
We do tend to go into mum mode don’t we. Keeping occupied is good for taking your mind off things but be careful that you’re not just storing up the emotions for later. Bring sad is ok & probably part of the acceptance process. It’s early days yet so everything feels new & raw & not knowing how your mum will be going forward is difficult. It’s the unknown thats the hardest to deal with as we always like to be in control & this is something we can’t control.
Sorry for the delayed reply, one of my brothers lives overseas and he had to go back home for work and I’ve just been spiralling a bit and prone to spontaneous (sometimes public) weeping! I’ve been scouring the threads for anyone that’s had a similar experience to my mum, she’s nearing 7 weeks of her hospital stay, she’s still on a feeding tube and has to permanently wear those huge medical mittens as she keeps pulling her feeding tube out. I would love to leave her with magazines or something to colour just to get a bit of stimulation but she refuses to eat more than a few bites so the feeding tube remains and so do the mittens. Sometimes she stares at me so intensely I feel like she’s staring into my soul, I asked her on my last visit (only visiting weekends now as I’ve had to return to work full time) if she understood more than she was letting on but just struggling to find the words and she nodded but she also nodded when I asked her if she had physio that morning and after checking with the nurse, they said she hadn’t. She also said she loves pizza (always hated it before) and sugar in her tea (that was always a massive no no) and I just don’t know what to make of it. I’m hoping the meeting with her medical team next week will be more enlightening as the Christmas and New Year period have been a ghost town doctor wise and it’s been impossible to talk to anyone about my concerns. When i take her mitten off she always holds my hand or tries to touch my face, I’m sure she knows me or at least that I’m an important person in her life, I just wish she was able to express that or show some emotion/recognition - sorry for the ramble, just feeling a bit rudderless
Hi @CatherineT I don’t really want to discuss your mum. I’d rather just discuss you. You are in shock and you need help!
This forum is good, but naturally the delays in replies are not always soon enough and I suspect you could do with something more. You need to talk to someone one on one so I’d suggest you phone the Stroke Ass. Helpline 03033033100 They have a Here For You service which I think you would benefit from. Please give them a call.
Also speak with your doctor, you refer to spiralling and weeping a lot and they are warning sign which really need to be heeded. You are under a great deal of stress, you are not coping! You may think that you are, you may be running on autopilot but that will run out. And the last thing any of your family want, is for you to wind up in a bed beside your mother. Make those calls and get some coping strategies in place now before you start spiralling out of control.
You are stressed out!
Phone the Helpline and make an urgent appointment to see your doctor in the morning. Stay safe
@EmeraldEyes thank you, I find that I can keep it together when in the presence of others but when I’m alone, working, driving, shopping etc. i just get overwhelmed with emotion. The other members of my family are extremely stoic so I feel like I can’t open up or cry in front of them for fear of making them uncomfortable. i will definitely call the helpline but unfortunately cannot see my GP as I’m working from my parents house which is a few hours drive from my surgery, although I could look into temporarily registering at my parents local surgery. I don’t feel like I’m doing much but my mums side of the family have often praised me for how I’m looking after everything and coping so well so perhaps I am on autopilot and just not realising it…
Oh you are indeed very stressed out, I’ve seen enough from my own family members, including my own husband, to recognise the signs. I’ve read all your post above and you are showing all the signs. That’s why I won’t discuss your mum, your mum is in good hands and receiving all the care she needs. But you are crying out for help!
And you are doing the worst thing you can do to yourself by hiding it from your family. Have you even checked your blood pressure? I’m betting it’s high! But I do so love to be proved wrong, because that would be some relief It needs 120 over 80 or below and you know what high blood pressure can lead to now
My husband has been work for a while with the same stress due to his mother’s health issues and work related. Thankfully she’s now recovering and a change in projects at work, plus an increase in his blood pressure tablets seem to have gotten him back to normal again.
Right now you are number 1. Your health comes first right now, there’s no two ways about it! If you are out of commission your dad and brothers are going to have to learn to fend for themselves regardless.
You’re number one priority right now is getting an appointment with a doctor. And you need to be able to talk freely and openly with someone about all this and the best places to start are with your gp and the SA. Do that tomorrow, don’t make excuses. You are going to feel soooo much better just for doing those 2 things I promise you. It’s called Share The Burden.
@CatherineT
Lea (@BakersBunny ) is going to restart the online carers cafe she used to run for the Stroke Association. But she’s happy to do a one for one
Here for you is good but there is a delay between when a beneficiary calls and asks for support and when the calls start - Lea and I both Here For You volunteers.
Simon
Ps I agree with everything that Lorraine @EmeraldEyes has said above
@CatherineT as @EmeraldEyes has said it sounds like you need to rake some time to look after yourself. It’s really important that you do as you can’t help anyone if you go under yourself. Is there anyone that can help out with anything? Have you thought about taking some sick leave just to give yourself a bit of breathing space? Don’t out a brave face on things. Cry if you need to & let others know you need some help.
In relation to your mum’s eating. It’s not unusual for tastes to change after a stroke. I loved coffee but it tasted vile after my stroke. I used to love broccoli & hate cauliflower but it’s now the other way around, i also developed a thing for pickle.
I hope you get some answers from next week’s meeting but in the meantime look after yourself xx
No but I have a little contraption for taking BP at my home, I’ll take a reading next time I’m there. Thank you for your advice, I haven’t yet called the Helpline, every time I picked up the phone it made me well up wondering how to find the words and I just can’t speak when I get like that, just a series of gulps and sniffles, I think I need to be in my own home to find a bit of balance and calm to go through with the call, I hope you don’t see that as making excuses, I just don’t think I can do it with my Dad always in close proximity, it would upset him and me
@SimonInEdinburgh@BakersBunny the online cafe sounds interesting and perhaps the gentle push that I need to become more comfortable with talking about these things although, I am not a carer in the same way that others in this forum are but hope I am still welcome!
I took two weeks off after the initial ruptured aneurysm and stroke and did a phased return to work, i am back at work full time as of this week which is perhaps one of the reasons that I’m struggling to control my emotions, it was also my first Christmas (except for 2020) without my mum there. There are plenty of people that could and are willing to help but my Dad doesn’t want any of that. He said he’s fine for me to go home and perhaps that’s what I should do a least for a short time to get some perspective and rest but for now i plan on staying until after the meeting with her medical team next week, I’ll save on petrol money at least!
It needs 120 over 80 or below and you know what high blood pressure can lead to now 
