A year ago today we moved in to our new home, up to this point we had been living in a double room in a shared house so we were very excited. Contrast that to the fact that in 10 days time my beloved partner will have been away from me, in a minimally conscious state, for 9 months.
I constantly struggle with the fact that Covid gave us 3 extra months (original surgery postponed) but also prevented me being there to help with his recovery.
What I struggle with more than anything is that I know nothing, I'm scared of the future and I'm still sad every day.
I hope all you lovely people are ok and getting on as best you can.
Written by
123Bereft
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This is a safe place to express your feelings. This past few months have been a problem for many people who use this forum, and I'd hope someone will respond.
If you are struggling please consider having a chat with your GP about how you are feeling in general and your fears about going forward.
Also consider contacting Headway, they are good with supporting carer's, and have a raft of knowledge to help.
Hi, I've been on here for a while and asked a few questions and also read some of yours. I'm having counselling but no one can really help me with how 'unknown' every aspect of our future is. Thanks for taking time to reply.
You are only too welcome, the future we take for granted until something like this happens. We never know the answer to the future, and possibly if we did know we would forget to live for worry about what is going to happen. But the future also holds surprises, and although you can't see them at the moment, the future can give rewards and joy. Take care.
The future is unknown however it often depends on choices we make in the present. Try and focus on the present as that is al you can control. A wiser man than me once said,"if you are depressed you are living in the past.If you are anxious you are living in the future.
If you are at peace you are living in the present."
Words aren't really adequate my dear. I can only wish you the strength to deal with the enormous challenges fate has dealt you and the resolve to accept the changes in your partner, and in your future.
I'm so sorry for the heartache and disappointment you've suffered since your man's brain injury and I pray that glimmers of hope and further improvements will present themselves as more time passes. All best wishes, Cat x
I think no amount of counselling especially at this raw stage will truely help. However, this in only my opinion for the reason ive held a long pole of this topic and avoided much as possible, as I know im not ready. Infact I dont think I will ever overcome, though hope 3-5years time emotions, thought process ease. Matter of making it through the day still moment when kids up and go to bed and putting on the keep calm, smile approach. Not once have I physically spoke about how I am feeling or thoughts. Only this forum as been my output. Like yourself dates sit with me.
I dont know what the future holds all round, but our men are here, breathing and making progress, its slow, some days great then one little thing weve gone back weeks, months of progress.
Just inner strength needed to make it through day by day x
I agree with you, I talk a lot, I'm not one for bottling things up anyway, so although I do my counselling, I'm not convinced that someone else listening is really benefitting me. I long for every day to be over because it may be one day closer to my partner being able to show that he knows me.
I agree benefit, I do try to talk about it, but I’m not sure it helps. I think unless people have experience of what we are going through,they just don’t understand how horrendous it is. I don’t blame them,before this year, I never understood how devastating a brain injury could be,not just on the person but the whole family.I have been allowed to have two longer visits with my husband as he is due Home,in the next couple of weeks. I am shadowing staff so I can see what his needs are and I have to say, I had no idea.every time I have seen him previous he has either been in bed or a chair.
Now I have witnessed him being attached to a machine with straps and pulled into a standing position and pushed over to a toilet and lowered back down. The two nurses had to do everything for him, moving his feet,legs and pardon my candour,pulling down his trousers and pants.this was the first time I was aware that he is using incontinence products because sometimes the process of getting him moved and to the toilet is just too long for him.
I am sorry if my post,is just too much information for some but to me,it was devastating seeing my husband like it and I have to admit,I sobbed my heart out when I got back to the car.
I do thank the existence of this forum,as I feel like you are the only group of people who can begin to fathom what we are going through.
Benefit, I truly hope, things start to improve for you and your partner, I think we are at the beginning of a long journey, hopefully we can support each other through these anniversaries.
Thank you so much for your reply, it made me cry, because I know you know what I am going through, I can feel how scared and anxious you are. I'm always here for you, and I thank you that you are there for me x
This resonates with me quite a bit. Having not been able to see our loved ones properly. We've not been there when the pads have needed to be changed or the catheter has leaked. It hit me when one of the healthcare assistants came out and asked whether I could bring him some bigger underwear because his current size was very very tight. I looked at her oddly (he had been on a feeding tube and had only started eating maybe a couple of weeks before, so I couldn't understand his weight gain. She'd quietly said that it may have to do with having to wear a pad. It had just never occurred to me.
Dont be afraid of splurging out your fears and emotions here. There is a very wide range of experience here and this forum is designed just for that.
Each case is different, but time is a good healer even if it is truly frustrating.
Some things that happened in hospital have come back to me since and I now am shocked at the state I was in, but clearly, time and calmness have allowed the neurons to reconnect in whatever way they do and find ‘workarounds’ to some of the damage.
Being taken to the toilet...yes. Bed baths ....yes. Much later finding my own way there without asking and emptying the collostomy bag because it seemed like it was getting full and getting told off because they wanted to record the volume. Hah! I must have been getting better.....”it was full.....so put the max volume down in your notes and the time”. Move on.
No wonder they eventually discharged me. 😉
Anyway going from being considered to be a ‘goner’ in the early days or later a vegetable who couldnt talk, through to today where I can communicate and try to pass on hope to others is a long arduous journey both for me and more so for those around me.
So to misquote my old football team motto, (players not fans) “Keep on Fighting”.
Tenacity and patience are essential and better times (even if different to how you planned) will come.
It is so hard to talk though things with someone who just can't quite feel those feelings. The ones that are covered in a thick crust of sadness and distress and emotions that actually don't have any words and are too hard to describe. Saying 1 day at a time would maybe not be helpful of me. And I know I've wanted throw things at people who have told me that. Maybe because they're right but also because they don't actually understand what a day is. A day is some unquantifiable no man's land which is dark and scary and can last for what feels like months, hours, something infinite and indescribable. So maybe they are right. Maybe they are right (though at times annoying) in saying to look for something small and hang onto it. It may be from that day, or that week. Or something in the past that you can hold on to. I've been relying on smell quite a lot to calm me. Initially I thought it was a load of nonsense. But it's helping (a lot more than the very large quantity of booze I used to cope up until about 3 weeks ago, still drink but not as much). Again these are words and they are probably not helpful, because feelings are deeper and can't be written very successfully. Sorry for blabbering. But here for you if you need.❤️
Thank you, it does really help, knowing people here have some understanding of what I am going through, like you say, most people cannot understand how deep the desperation is and how hopeless things can feel. I used to enjoy a drink with my partner, but I have barely drank since his surgery, it doesn't appeal to me, having a drink just reminds me of how much I miss us.
I'm ok, thank you for thinking of me. I hope all is well with you too. I was thinking of you earlier, my partner always had a smelly candle burning, another one of his addictions, and I lit one of his favourites today and the smell.....
That must have been a hard one for you. Shame they won't allow something like that in the hospital. Does the candle market do a scented oil that he likes maybe? My kids send one of their teddies called "sick rabbit" which we use for when they're sick. It's one of those baby ones with the cloth thing. I would put olbas/eucalyptus oil on it when they were bunged up. If there was a scented oil that he liked do you think it would bring him some comfort?
Hopefully that is likely to change over the next few weeks if things stay stable. I wish I could say more or provide more encouragement. But this whole thing is so so tough. What will change for him in the new rehab place or will it be similar to where he is now?
I think it will be the same as now, it sounds like a good place, Castel Froma in Leamington Spa. Thank you, a lot of people say to me that he will be fine and he will come back to me, but people on here know that this may not be the case, I'm always hopeful but I have to prepare myself for the future x
You're right there. Things seem slightly more manageable if we're given the time to process and prepare. Sometimes it's just not an available option...but we muddle through. This is a good group to muddle with at least.
I think you're in an absolutely dreadful place. You have no control over what's happening to your husband, you're desperately sad about the companionship you've lost and fearful of what lies ahead for both of you.
Who wouldn't be in emotional turmoil in such awful circumstances?
I think you should keep pouring out your feelings as you have been. Use this forum; it's safe. Keep a written journal - especially handy to write in the wee small hours when sleep is denied you - and take life one hour at a time. That's all you can manage for now. Try not to think further ahead than that. It takes practise.
Try to keep in a routine, even if it's just going through the motions. Especially try to eat properly and walk for exercise. When walking, try to notice your surroundings and keep thoughts out. Take counselling from wherever it is offered; others on the forum know much more about this than me.
We cannot see what our future holds; none of us. That, I think, is a blessing in many cases. I sincerely hope that your situation becomes easier to deal with as time moves on.
Oh my, your post really made me cry. Life can be so unfair, as everyone here knows, but your case particularly touched me. I wish I could offer words of comfort, but to my regret and shame, I have none. Miracles do happen, and I wish for one fir you with all my heart. Xxx
A hopelessly inadequate bit of sympathy from me B - just wanted to say I really feel for you both. People here have said it all already. And I couldn't give you any better advice than Bridgeit has earlier today.
No-one deals well with uncertainty, it's one of the hardest things to cope with, because we're wired up to want plans and certainty. I think grieving for those lost futures is very natural and very hard.
Something that I've found helpful to say to myself to get through things that have happened to me, is a random saying someone gave me once when I'd been overwhelmed in the past - which is 'When faced with a mountain of potatoes to peel, just peel one at a time' - meaning I suppose, you can't do everything at the same time, but do one very small thing at a time and you will get through.
So do what Bridgeit said and just tackle things one hour at a time, and be kind to yourself - and just know we're all here to listen to you when you need. It's so very hard and frightening for you, but people here will understand.
Thank you for your kind words, I've visited him today, so difficult to catch his attention and even then its only for a moment, I wore his favourite tshirt today and he did look at that for a few moments and I took his watch in and put it on him, just whilst I was there, it's his most prized possession, a gift from him mum, long departed, he spent a long while looking at that, he watched me cut his finger nails, but he still really struggles to look at faces. I generally manage to stay strong, I keep to my routine, but this past week has been hard, Mother's Day with my only child (25) refusing to communicate with me and my partner being unable too, it really affected me. Take care xx
I'm so sorry for you,I'm really struggling too.will there ever be better times?I havnt slept most of weekend,im knackered not sure how much more crap I can take.I guess we here in the right place,at least we have each other right?
Absolutely, it helped me to know that you also struggle to get information from the hospital, I haven't spoken to anyone for a week with a progress report. I actually sleep ok now, I keep a good routine and try not to think when I go to bed, take care.
We reached 10days of better behaviour it's a records, and sadly later in day hard work stamped out. We have roofers to sort fascias/gutters honestly so bad its buckled. Husband inspected and flew off handle with me, it's my fault apparently. However, will hide husband tomorrow as i know he will get physical so going to be testing, whilst i explain faults found as last day tomorrow.
On the brighter note home visits been arranged for next month with BI Team clinical occupational therapist.
I've been up since 2:30am up up stupid thoughts again, so robot today as today last year husband transferred to another hospital due to behaviour then he escapes luckily police finding him, Wednesday his full year at home . Again those bleming dates. X
I do understand completely, I was thinking that the date of his surgery, being 3 years to the day that we met, would be a good omen. How wrong I was. He said he waited all his life to find me, so I'm waiting, waiting for him to come back to me.
100 days is something to celebrate though, silently of course! I hope you manage to get some sleep tonight so you can manage to keep things on the down low tomorrow.
He does have his character which has come through with still recovering, which gives me the hope . Behaviour side has been the most difficult to manage but despite this current issue, he is progressing well
No, not really, he is stable and comfortable and seems happy when I see him, but no improvements, it was 2 years 30th June, so I'm not feeling very hopeful now. How are things with you?
he is stable, that’s a good thing. Is he able to communicate or look you more in the face? The brain is an interesting thing, it can take some time. My partner takes omega 3 capsules etc which helps to grow new brain cells and I did notice a difference in him after 3 months of taking them. I’m not sure it would work for you but thought I would share. My partner has had a tumour removed and it affects his moods, headaches, rationality, memory etc but he is able to communicate.
He is fed and medicated through his peg, so I'm not sure how that would work, I'm back to not being able to visit because of Covid. He does look at me, but no other communication, no waves or hand gestures. It's tough. I'm glad your partner is improving, always good to hear positive news 😊
oh ok I wasn’t aware that he is being fed through a peg… are you based in the UK? COVID restrictions have been somewhat relaxed here in the hospital wards. There is an improvement that he looks at you, my heart goes out to you💕. Has the doctors given you an estimate of his prognosis as in do they think he could improve in years to come? Have you looked into others recovery progress timelines for people in a similar situation to your partners?
Do you have any friends you can spend time with as well? Sometimes a good friend helps I never had one so it was mega hard on me when my partner couldn’t speak, eat, communicate and still now with his outbursts it can be terribly scary
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