Karen- 4 weeks home

[2Weevils]

Well we are almost 4 weeks into Karen being out of hospital.

We have had a bannister fitted, a bath board, are waiting for some handles for the shower, and our 4 weeks of having carers twice a day finishes tomorrow. It’s not that they aren’t helpful, but they come at such different times that their usefulness overall is quite limited.

Karen’s aphasia is quite marked now, and there’s a lot of reading between the lines and working out what she means, yet at other times she is very clear and can talk on the phone with few issues when it’s someone she knows. I do notice how her brain latches onto certain words, eg a person’s name, and then her answers to the next few questions are that persons name because her brain is stuck. I gather that this is not uncommon and hopefully will improve over time.

We are doing her daily exercises together, although her right arm, her ‘bad’ one, is giving her a lot of pain between her elbow and shoulder, so we have to be wary of that, and she has done some short walks outside now, although she finds that all very tiring and needs to lie on the bed to recover afterwards.

We are also working through a stroke recovery activity book that I got from Amazon. There are lots of word searches in it, mazes to follow, sentence completions etc, which she quite enjoys doing, and hopefully is finding useful.

Aside from that, she is staying up later now, an hour after me, and I have to trust her and hope she will be okay, but she finds it harder to sleep if she goes to bed too early, and so I let her do her own thing rather than insist on her doing what I do.

As for me? Relying on energy drinks (in moderation) to keep me going, my fibromyalgia pain is off the charts, I feel like rubbish, but that’s life and until I can be certain she will be safe (and she still has a tendency to over-reach and tire herself out without thinking of the consequences), I guess it’s how it will be. It is hard to relax when you are always worrying.

But that’s it. And on we gooooooooooo…

[Sue22]

Ah that is good news that Karen is settling down at home now. It will be difficult for both of you as you go through all the recovery processes that will be needed, but wow, how wonderful she has come this far and it’s good to hear that she is able to interact more now, even if her brain gets “stuck”, mine still has a blank session when I’m talking and suddenly I stop as I don’t know what i’m talking about or that my words are in my brain but I can’t say them. I’m sure it will slowly get a little easier as the days go on. I’m happy for you both as when you look back to the beginning and all seemed impossible and now Karen has made progress. I hope that continues to be the case for both of you. Please bear in mind though it’s just as important for you to take care of yourself as well. I know that sounds impossible at the present time, but your health and well being is just as important to Karen as well. Take care

[Susan_Jane]

So pleased to hear that Karen is settling in at home and it sounds like she’s making some good progress. Keep going with the stroke recovery activity book, I’m sure that will help her to think sbout things like logic and problem solving. I would just say that her brain will need to recover from this traumatic experience and it’s so important to rest when she needs to, as everything will be tiring for her, post stroke fatigue is a very common problem for lots of stroke survivors.

Unfortunately the road to recovery following a stroke is a roller-coaster of emotions, often 3 steps forward 2 steps back, which will be very frustrating for both of you but hang on in there and with your love and support she will slowly make some improvements.

Keep up the good work and I look forward to hearing from you as her road to recovery continues and please take good care of yourself too.

One last thing I would like to say. My husband is my full-time carer following my hemorrhagic stroke which paralysed my left side and he’s been amazing but he does sometimes say that looking back, he thinks that he has held my recovery back and that he has sometimes helped me too much and made things too easy for me. Although I will say it must be so difficult to see someone you love struggling when you can easily help them and I am so grateful for the help and encouragement he has given me.

Keep on Keeping on

Regards and best wishes to both of you

Sue

[Rups]

Accepting, adjusting and adapting takes time, but it sounds like you’re starting to figure out routines that will suit you both. Like the puzzle book, good brain stimulation and should help with fatigue because some puzzles are the equivalent of brain blanking.

[2Weevils]

Thank you. Yes, it can be frustrating for both of us. She wants to do more, but the pain in her arm is holding her back.

I have lessened my interactions to ensure she doesn’t feel like I’m looming over her and restricting her too much, and she has days when she feels she can do more, and days when she feels she can do less. I just take each day as it comes.

[Bobbi]

@2Weevils

It is very early days for you.
It might seem strange, but make notes, take photographs, you are on a long journey and will make memories, experience changes and I’m sure move in a better direction.

Those records you keep will help you get a feel for your progress as you learn about yourselves and I’m sure begin to find ways of coping and confronting difficulty.

Don’t forget us here on the forum, don’t hide away, we want to hear about your successes and we will commiserate when things don’t go the way you want them to.

You are living, this is life, and it has its ups and downs.

Best wishes to you both.

keep on keepin on

[Mrs5K]

It sounds like Karen is making some really good progress & that you are both settling into a routine. That will get easier as time moves forward although you probably can’t see it right now.

Not stressing about her staying up after you’ve gone to bed is great and this will help her start to regain some independence which is important for both of you. You may find that you can soon leave her for a little while in the day too.

She will get tired after doing things like walking outside but the more she does it the easier that will get too. Rest is important for her after doing things too.

I would echo a little of what @Susan_Jane said about doing too much for someone. There were times in my early recovery days where I wants my husband to leave me to try things but he didn’t. It was all done with the best of intentions but was a little frustrating from my perspective at times.

Arm pain is quite common for someone who can’t use their arm. There’s a condition called subkux I think. You may want to get her checked for that (or any others conditions like frozen shoulder) to make sure it doesn’t get worse.

But you are both doing great. Keep going. It’s all starting to come together.