Another week with Karen

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Things are moving.

From hosts to walking, and now every time I visit, there’s a new frame at the end of her bed, and they’re getting smaller.

The steps are no longer a shuffle, but actual steps, and she’s even climbed up a few, and her right arm, whilst still frustrating her, is beginning to loosen up a bit, and the exercises to improve its overall movement are certainly becoming smoother and more confident.

She has moderate expressive aphasia, and often struggles to find the right words, but then at other times it all seems to flow naturally and I will get three or four perfect sentences in a row. She recalls things I didn’t think she would recall, then forgets my name and calls me by her first husbands name instead… which I think must be grounds for divorce, lol.

We’ve had a big meeting and discharge dates have been discussed. On Monday they’re coming to view the flat so they can see what equipment we might need, but given it’s a flat on one floor, there’s probably not a great deal we will need.

Karen is desperate to come home and continue her rehab here. The place she is in is lovely and the staff brilliant, but I can’t help but feel she will improve once she is back in familiar surroundings with things she knows.

So that’s where we are. I couldn’t be more proud of her as her determination and desire to progress have been first rate, and they’re all very pleased with her efforts to get better. I’ve now had 8.5 weeks with no night of more than 3 hours sleep, the cat barely recognises me, I’ve been living out of a backpack and have spent £3000 on hotels and food and transport, and whilst the money isn’t important (and I’m fortunate I can afford it), I’d much rather it be spent on care or things Karen needs than some frankly pretty grotty hotel rooms.

So, hopefully soon, we will get a discharge date…

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Please tell Karen well done from all of us here. Now may be the time to start researching benefits Karen can claim - PIP; ESA; Blue Badge. You may not be able to claim yet, but if know the process you will be ahead of the game and can start getting the evidence together. Also if your house/flat may need adaptation talk to your local council to get help.

The hard work starts now.

Good luck

Janet

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Thank you. The hospital are coming to view the flat next Monday at 7.30am to see what adaptations are required. It looks like they will be minimal bar a walking frame and things to help her off the toilet etc. Yes, I have had a look at the benefits situation, and the minefield that it is. I know from my own applications for PIP and ESA, what a painful process it all is, but I will be ready to fight when Karen comes home.

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That is such good news and you must be so relieved and over the moon with her progess…considering how she was when she first went in :grinning_face_with_smiling_eyes: And you can be proud of both of you with how you have coped with it all, you are stronger and capable than you think :people_hugging:

The only way is up for Karen as she continues to progress, and some may be quicker than others. For me speech took the longest, I was walking, driving and doing everything myself before the speech really started to come on. None of it is perfect 5 years on, but I’d say I’m at 90% recovered. Karen’s stroke was bigger but she’s also a lot younger which is a benefit.

It will be a bit of roller coaster ride for her neurofatigue basically stops her from overdoing it. That’s usual when things like speech seem to regress, but don’t worry, it’s not in reverse just the brain resting on or busy working in another area, it can’t multitask like it used to. So take it one step at a time, this is a marathon not a race.

Lorraine

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This is wonderful news.
I couldn’t be more happier for the both of you.
You have been through a lot and I am sure you will have learned a lot.
There is still more to come and more to learn, but as long as you keep going with your current mindset you will do well. When I say you, I mean both you and Karen :slight_smile:

Don’t underestimate the challenge that lies ahead, but at the same time do not get frustrated if there are times when you need to slow down or even normal - this happens in other walks of life.

It might be better if you could plan a recovery schedule and build in breaks / rest periods for yourself and Karen and for you to have some “me” time. As an example, you could plan some non-rehab activates at the weekends. This is like you have the weekends off from a day job and it will allow you to recharge and may make the recovery more stronger and smoother. Rest periods are very important and should not be underestimated.

The rehab place where Karen is in right now sounds great and it seems she is getting a lot out of it which is great. This will help prepare you both for when you get home.

Don’t underestimate home adaptations - try and anticipate the needs going forward and get the work done now. The OT coming to do the assessment will advise but you can think and plan ahead yourself anyway. The OT will have their remit and that is usually going to be the minimum you might need, which may sound fair enough, but once they discharge you, it can sometimes get harder to get the support you need.

Well done both of you and remember, this forum will always be hare if/when you require more information/support or just an outlet to vent off steam etc.

:pray:

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Good to hear Karen is making progress. Going home, if possible, can be a mental relief, as you say, being around familiar things. For me, it was a proper bed. Sounds like you’ve spent a fair whack there, but I’m sure your presence has benefited her greatly.

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This is such an amazing post to read and it is great to hear that she is doing so well in what is a relatively short time frame really. The rehab facility she is in as obviously done her a lot of good and the fact that they are talking about discharging a home so soon is absolutely amazing. As others have said you should both be very proud of yourselves. I know it’s been a very tough time for you and you’ve had to go through a lot yourself but it sounds like everything is starting to come together now and the Only Way Is Up. Take any adaptations and aids that you might be offered because you will probably find you need more than you think but hopefully if Karen is determined to continue in the same vein these should just be a short-term requirement. It will be a relief for both of you no doubt when she is home and you are both back in your own comfortable environment.

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This ios brilliant news, and I am so glad to hear it. Recovery is never linear, so important to avoid setting yourselves ‘schedules’ and ‘targets’. Go with what the body offers. Don’t fight fatigue; that is essential rest for recuperation. You have both done wonderfully well. Be proud.

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Find your nearest Social Prescriber. They will help you with any paperwork, advice re PIP etc. Ours comes to the GP surgery and social hub. Filling in forms in the right way can stop them from being rejected by the authorities.

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Thank you. Yes, I’ve spent the weekend considering what we might need. Thankfully, the flat is pretty small so there aren’t too many areas of concern. I will certainly need to factor in a recovery schedule.

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Thank you. Yes, I think the thing she misses most is her bed.

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