Christmas greetings

[Marie3]

Hi to all the wonderful people,

I would just like to wish you all the very best for this Christmas and the coming Year. It’s a new year and and a fresh new step to ongoing recovery. My husband had a very negative mood this Christmas day. But I think it can be a very difficult time as it’s a busy time and I do try to involve him in daily tasks, he loves cooking and so in the kitchen we started all was good. Until the meal itself when he just took himself away shouting a few chosen words…. After some time he felt so bad for what he said spoiling the day. I try to reassure him it’s alright and that each day at a time . He said he feels useless he can’t do much?

I say you do what you are able to do and to me that’s a lot more than you did a few months ago each month he is getting stronger but I worry when he sits down he has his head looking down at the floor he doesn’t say much just stares at the floor? It so sad to see​:disappointed_face: But if we are doing things together he is happy so I try to keep him involved in doing the things he loves. The only thing is he will start things then just wonders off. I do make light of this as I say no “disappearing” as dishes need drying!

But the new year is coming like I said it’s a new stage in everyone’s recovery new and hope a positive outlook.

I wish you all the strength and positivity and wonderful new memories to make for the coming Year. My Father always said to me where there’s a will theirs a way!

Never give up! Xx

[EmeraldEyes]

Hi @Marie3 rest assured it will be a happy new year for you all as things keep on improving. The downing tools in the middle of a task is in actual fact his brain taking a time out. They are very frequent in the first year or so, depending on how bad the stroke was.

Sometimes you can get back to the task, then others times it’s more a matter of moving on to a different task, that gives the brain the break that it needs. Other times it’s more a matter of just sitting it out in peace and quiet until the brain is recharged. We quickly lost count of the number of times I’d abandon half completed tasks, my hubby and 2 kids were always at hand to take over where I left off.

When your husband does that don’t worry or be disheatened, and waste your energy trying to coax and encourage him back. Just give him 5 minutes, or an hour if need be. Let him come back to it in his brain’s own time

Pushing can be irritating, particularly when the brain has shut down for a break. He is constantly learning/relearning the how to’s, and because the brain is having to function fully, albeit at a reduced capacity, it gets overloaded quickly so it fatigues quite frequently. And this is why he gets angry.

His brain just needs time reboot, like a computer that’s just received an update. And just like computers, its always at the most inconvenient time. Everyone knows that one these days with mobiles, laptops and ipads

I know from a previous post that you have at least one child, a daughter. Do you remember how cranky she’d get when over stimulated or tired, particularly as a toddler…need a nap That is basically what is going on with your husband. And brains in recovery are very stubborn and determined buggers! They will not be pushed or cajoled into anything when they’re tired. It’s damn frustrating, I know!

And it’s nothing for either of you to worry or get upset about. Just go with the flow, I promise you, it really will get easier, for both of you! I don’t normally make promises of this nature, but if his TIA was anything like mine, he will get so much better over the next year. You all just need to relax into this new routine and way of life. It will help his recovery if you both can do this.

Show him this post, let him reassure himself. It will get better, you all just need to accept the time it will take and be patient.

And enjoy the rest of the festivities as best you can.

Lorraine

[MrsG16]

I can see how unbelievably hard you are trying to help him and sound like you are doing amazing I wish my husband would come onto here just to get more of an insight into what’s happening with me. It shows how much you care and are invested into his recovery.

Please do not take this the wrong way as I know you mean well by making a joke out of him ‘disappearing’ but this is not helpful. Sometimes we just hget so frustrated with ourselves that we mmcan’t do the same things or remember what we were supposed to be doing or even feel emotionally detached to what we are doing/should be doing and this brings anger/frustration.

From my own side, I am only 2 month into this journey myself and if I take myself off it is not helpful to hear ‘where’s your mam gone’ and things like that there should surely be more of an understanding than that by now and that just make me personally feel worse even if it is meant as a joke.

[Bobbi]

I had a stroke 4 years ago. It is all in the past. Long gone.

But I still live with the effects. So does my partner.

We are a team. But we are not chained together. I encourage her to engage with her own world, to take a break. In effect to give me a break. We wouldn’t be without one another but we both need time apart. We need to manage this balance and cope reasonably well.

We both have a mobile phone and even when just in different parts of the house we have this easy way to reach out.

I wish I wasn’t disabled but refuse to let that dominate my life. I have to make compromises but usually manage okay.

There are ups and downs but that is pretty much how life is for everyone whoever they are. I’m still alive and am glad for that.

My little story is about a life changed but still moving forward. The early days are a puzzle wrapped up in a mystery but over time one finds ways to deal with it all.

There is a lot of good sense discussed on this thread. This forum is a great place to share, to discover and sometimes to take a break. I’m glad that is here for us.

Best wishes to both carer and the cared for.
Be kind to one another.
A new day is dawning and very soon a new year will begin.

keep on keepin on

[Gnasher]

You certainly are doing a great job looking after your husband. It’s very hard for the carer in lots of ways.

Thankfully like I’ve said many times my stroke was a lack of speech only. And that’s not fully back but loads better.

I help out as much as I can around the house. I even cook still. A thing I’ve always loved doing. But sometimes I’ve just not got it in me to do that or other things due to the tiredness. I just look at the wife and she knows I’m done. And I say battery charger needed. I also take myself away upto my quite room. Pick a Beano annual and yes I have many and enjoy the time alone. At some point a knock on the door and a coffee is passed to me with the words I’m here. She then goes downstairs and watches some garbish on TV. Does she worry about me. Yes at first when I did these things it felt like I didn’t want her around she once said. But now she understands I need to have me time. Don’t we all.

It takes time to get things right between you both. It’s a learning curve for both of you and children if you have any. But let me make it clear. Were not the same person we were once. But we still love you like we always have and always will. That’s a promise.

[Marie3]

Hi Mrs G16

Thank you for your advice I didn’t stop to think that making light of of my husband wouldn’t be good. I don’t any advice the wrong way as it’s ment in good faith.

I normally just take over a task he has left as I know he must be tired. But looking at it making light is not good especially at present. We normally joke around so much that I didn’t think but I understand now it’s not the right time thank you for pointing this out as it’s helpful to know. Everyone is so supportive and I take any advice and help I can get thank you for your honesty and support.

[MrsG16]

The hardest part so far has been coming to terms with just not being the same anymore but still trying to be if that makes sense. Me and my husband were the same always joking and poking fun at each other it is hard.

[Mrs5K]

Everyone has said what I woulf have said so won’t repeat it but just know yoh are doing a great job. It sounds like progress is being made and the New Year will even more progress. Four years on I still need time out & just can’t deal with certain things/situations.

Happy new year and I hope it is one full of positive progress for you both.

Ann

[Susan_Jane]

Hi Marie Happy New Year to both of you. Please believe me when I say you are doing an amazing job caring for husband.

I’m 8 years post stroke following a hemorrhagic stroke which paralysed my left side and my amazing husband and my grown up kids have been by my side ever since and I don’t know where I would be now if it wasn’t for their love and support.

Speaking as the stroke survivor, I still find it difficult being the one who sits on the side line whilst everyone around me rushes around.

All I would say is don’t stop trying to include him but let him choose when to dip in and out. I can load and unload the dishwasher and make a cup of tea and I drink gallons, so I’m pleased that at least I can do that myself .

My husband has said on many occasions that he feels that he has held me back in my recovery by helping me too much at times and that he feels that he has made things too easy for me sometimes. That’s easy to say in hindsight but it must be very hard to see someone you love struggling when you can jump in and help, so I don’t hold it against him .

It’s so difficult to get the balance right, so I would say keep doing what you are doing and I’m sure with your love and support things will slowly improve.

Sending positive thoughts to both of you.

Regards Sue

[Rups]

It takes communication to balance out these issues from both sides. If I am cooking, I can’t have my partner asking me questions, I need to focus. I can’t juggle thinking like I used to be able to. Sometimes, I need to rest midway doing the most basic tasks, but I have become a clock watcher, so I time my breaks. If I can’t complete a task in its entirety, I give myself ten minutes on the clock to rest before thinking of going back and completing it. The festive season is madness for heightened activity, people tend to shift gears into busy mode which I have always thought odd because it should be a relaxing time for all However, there is lots of pressure to hit all the right notes and I feel this is quite distressing at times for a damaged brain.

[Gaina]

I find that total honesty with loved ones is immensely helpful.

I can’t joke around with my Dad like I used to, and would cry where I used to have a witty ‘clap-back’ because my brain was taking everything too literally. I explained this to him and now he understands what’s happening when simple things make me burst into tears.

[Russ1]

I have just been through 6 weeks of counselling and was made to realise that I’ve got to accept every change not just the big changes,as in being able to stir a cup of coffee is as big as going from not being able to walk to walking, being positive is hard going but being negative will make it harder. Have a great new year

Russ

[Marie3]

Thank you Susan,

For your kind words and understanding It’s ironic in my situation as I have worked with elderly/ post stroke people for I’ve 31 years. But it’s not the same when it’s your own loved one. It’s a loss and it’s just hard to come to terms with that change. I spent weeks crying alone in my bedroom so my husband wouldn’t see as I knew this would make him feel bad. But each day I listen to everyone on the community and this brings me understanding and comfort and I also learn more. They teach you a lot in training but, when it’s your own this goes out the window as shock his like a bullet! I need to stop and reboot and put some of my experience in to my what I do and say each day.

Thank you