V.Mama

@tricia0304 I'm really sorry to hear about your husband's ill health and decline. I fully agree with @Daffodil, get an urgent review of the UTI. An unsuccessfully treated UTI can masquerade as dementia and other conditions such as depression, and needs to be reviewed, regardless, it sounds like your husband needs a medical review. I hope you can get some attention for him asap. What a difficult time for you both. Hoping for some answers for you soon.

@Susan c my husband had a NASAH 2.5 years ago. I can relate to some of what you have said, an increase in rigid behaviour or thinking that can drive me a bit bonkers sometimes. Our lives, especially at home, are made up of a myriad of small things, so when something gets on our nerves, it can change how we feel about life at home. And yes, working from home has meant we have seen a lot more of each other. I have also had a sick 15 yo at home for 9 months, and I work from home, so having the house to myself is so super rare. I agree with Tina, you have both been through an immense trauma, and while survival and 'signs of life' as I put it are still amazing, we are human, and imperfect. Sometimes things annoy us, but it doesn't mean we don't love our partner or that we aren't super grateful to still have them here. Here's a few of my observations, partly personal as a partner of a NASAH survivor, partly professional as a person with expertise and experience in supporting people with disability: - survivors of SAH have experienced some damage to their brains. This doesn't mean they have lost intelligence or cognition, but that their cognition may be changed, slowed, sometimes get a bit clogged up, and tasks that they used to do without thought now take active concentration at every step, which is exhausting for them. So some rigidity around routines/not being interrupted during a routine etc, are their way of coping and still being able to be as independent as possible. Adults all need to feel capable and competent, and people with brain injury are often very aware that their brains once worked differently, and there is certainly some self protecting behaviours (pretending or denying there is a change), some anxiety ,and some grief about that. As partners, we also grieve the loss of the capacity that our partner once had. This is normal, it happens a lot, and it is ok to feel these big and conflicting emotions. Being able to name it and talk about it might be helpful, but as you say, it might be better for you to have this conversation with a counsellor. Your husband may or may not have a need to talk about it. My husband and I talk about it quite a lot, especially when it is really getting him down. Being understood, and being reassured that what he is experiencing is a real thing helps him to cope. - The fatigue your husband experiences is huge, it never goes away, and it has a real impact on his lifestyle (and yours). I know that if I want to go somewhere that is noisy, or busy, that my husband probably will not enjoy that at all . He gets overwhelmed and can't cope. It's like torture for him, so I either go alone, or find a friend who enjoys those environments. My husband joined a small cycling group after his SAH as a part of his recovery, and it has always been his 'thing', his social time, his group of friends. I fully support this, because I knew that he had to have some independence from relying on me (and I needed to not be relied on always too). Having said that, I do provide a lot of emotional support and reassurance to my husband - again, the brain injury affects his ability to regulate his emotions, he cries easily, feels things deeply. He is very optimistic and joyful, but also very easily affected if he sees others in distress/hears distressing stories. So he limits his exposure to that content/those stories. His sense of humour, enormous intellect and beautiful character traits are all still the same. Sometimes I find his neurotic behaviours are a bit more concentrated than before the SAH (we all have neurotic behaviours), I try to tell myself it's 'signs of life' at those times if I feel irritated, which was our joke in hospital when he had to deal with yucky body functions - I'll say no more. Your comment that your husband says you are yelling at him really caught my attention, my husband says the same to me when I am not yelling at all. I do have a naturally strong voice, but he tells me I'm yelling or raising my voice when I'm not sometimes. It has puzzled and annoyed me, but your response and Tina's has helped me to understand that better, thank you. Please don't feel bad or guilty at all that you have reached out for support. We all have a different comfort level with being vulnerable, and saying things 'how they are'. But it is really important that we can be real about what life is like for us, it is how we cope and can find a pathway through. I hope you get the support you need for you. No person needs to be an island, or cope in isolation. You are not being disloyal to your husband to seek support to understand his needs and behaviours better so that you can continue to be the amazing support you have been. I hope your holiday is a beautiful time together. V

Hello @Esedlock, I'm glad you found this forum so quickly. My husband had an NASAH in May 2019. He was still in hospital at 3 weeks, he developed hydrocephalus and was very sick. When he returned home he was extremely frail for months. You are doing amazingly to be so active so soon. It sounds like you're really keen to know 'when' you will be recovered. From my observation and reading, everyone is super unique with that, and no one can actually give you a definitive answer, even Neurologists will give you a vague answer. Some people report ongoing improvements 12 years later. Some people, like my husband, experience relapses. He has been working too much lately and experienced a recurrence of the daily headaches, head pain on bending over, stabbing pain at the site of his SAH, and extreme fatigue. Like others, he exercises, is really fitness focussed, regularly cycles 60km, and runs 5 km, but brain work and concentration (he's a train driver) really wear him out in an entirely different way to being physically activel. I recall the advice to him in the early days was to drink plenty of water, to rest when his body and brain asked him too. However, sometimes when his brain is fatigued, a gentle cycle helps him to feel better. The biggest challenge for him is to not overdo things. like you, he wants to find his limits, and be at his best. Sometimes he overdoes things, and then he knows all about it. Time, patience, gentle perseverance and being willing to manage your expectations seem to be the key. Take care

@debbieg you've had such a journey to finally getting some answers. It sounds like you're finally getting the treatment you need. I hope you start to feel an improvement soon. I live with several auto immune conditions, some of which are quite benign, such as vitiligo, but what I've learnt over the years is that being vigilant about keeping a healthy balance in life, getting good quality and regular sleep, regular exercise, and healthy nutrition, plus drinking water, has all helped to keep me on an even keel. You've had so much to deal with, on top of surviving an SAH and a long hospitalisation. I hope life is kinder to you.

Hello Sarah I have not been on BTG for many months, and this is the first post I have read. I have been dreading reading such news of other BTG members. I cannot express strongly enough how precious and beautiful your lovely mum was. Her replies to my posts gave me hope, they made me smile, and helped me to be grateful every day. I could always imagine her singing at the top of her voice with gusto! As you well know, Win shared her sunshine and wisdom so generously with everyone who stepped through the virtual doors of BTG. I am very sorry you have lost your mum, especially under such trying circumstances and not being able to be with her. My dad also died suddenly of heart failure nearly 10 years ago, he was alone at home, 1200km from me, it was a huge shock at the time. Sending lots of love and hugs of comfort from Australia to you. xx Veronica