heathber

It's all relative Sue. But yes you are a Success. You keep on plugging and don't let it stop you. Being back behind the wheel and independent again is a great feeling!

Hi Will had to report this one! Today I hopped on my left leg for the first time in 9 years! Admittedly I had a good solid bar under my right hand and probably cheated a little through that but I actually had air time!  We tried it as my PT noticed that today on the total gym while doing 2 left, 2 right repeat (skipping drill) I was fully clearing the plate without assistance from her for the full set. So we tried single hops in full gravity and I COULD, only 5 times before the muscles refused to do it again. but it means I can do it. So now we start building it up. Next goal flight phase for running doesn't feel so impossible right now.

-Heather

Hi Will, my proper name is Heather, heathber is my login name. I don't mind which people use.

I learn "new tricks" all the time. They probably mean nothing to other people though, even strokees, as most of them are ways to do things around an arm/hand that is not much use even as a dead weight.  Pre stroke I was a hand sewer; quilting, cross stitch, embroidery, tapestry etc.  I pretty much stopped doing it after.  Although in rehab we worked on the adaptions needed to get me back to the tapestry, it fell by the wayside after I returned to work. It takes more spoons than I can spare.  What used to be a relaxation has become hard work.

But I've recently started work on my "big quilt" again. It is a hexagon in hexagon design of 6 inch mini quilts that will be sewn together to make a big one. blue/red/green tops with a cream backing and edging. fiddly but beautiful, I 'll need to put some photos up, but at the moment my phone is dead. I started it as a fully hand sewn piece and I had over a number of years made about 40 of the mini quilts before my stroke (there need to be about 200 to start to put it together, total will be about 500).  I put it in the UFO cupboard after my stroke thinking one of the family might eventually pick it up. But then a couple of months ago I thought about it again and realised it doesn't matter if it's a mix of machine and hand sewn blocks.  I've now finished all the blocks that were assembled but not sewn and assembled and sewn a couple of new ones! I'm now using sewing clips rather than pins, and I have this cute mini iron that I use to do the folds.  The end results are not as uniform in size as the earlier blocks, but they are close enough that I'll be able to make it work.

So that's an example of adaption rather than regaining function. I hope it's not too far away from what you were looking for

I assume you were not given those laces because the expectation was that you would get to where you are now and without an incentive to keep trying you might not have got there. My arm/hand were and are basically useless. in rehab I didn't have any feeling or sensation so there was little expectation that I would get much use back, which doesn't mean we didn't try and I do even now 9 years later go though bursts of having another go with the arm, but the practicalities of day to day living also need to be allowed for.

I can now do the stairs no hands most of the time too, although I prefer to have a hand or even a finger on the rail or wall.  Did a new HiMAT (https://www.physio-pedia.com/High_Level_Mobility_and_Assessment_Tool_(HiMAT)) assessment the other day and scored 17/54, this is my best score yet. There are still large sections of the test that I score 0 on, but 17 is a lot better than my original score of 11 (4 years ago.).

Congratulations! That's one I'm still looking forward to in some ways. I use a modified lacing method that makes me independent, once the laces are setup in new shoes. My sister is the wonderful one who takes the laces out and re-threads them my way when I get new shoes.  One of those times where the old way doesn't work so you find a different way. elastic laces and clips have limited functionality. I now get to laugh at the PTs when they try to help me with my shoes and are completely baffled.

Sue Hugs! - you've had brain surgery you'll probably have quite a few of the things that we stroke people know all too well. So fatigue and headaches are probably normal. Try not to put deadlines on yourself.  These things take as long as they take and talk to your GP about extending the homecare services if you need to, you probably qualify on age grounds even without your recent surgery.

The other thing is "don't sweat the small stuff" do what you can do, and try not to worry about what you can't do yet. Admit that if other people do it, it won't be to your own standard or in your own way. One of the hardest parts about being on the other side of the event.  You have lots of experience with being the carer, now you need to learn to be cared for, and it's not as easy as people think!  Fingers etc. crossed that you start to feel more normal soon. but if they told you 6 weeks give yourself the full 6 weeks, don't borrow trouble and all that.

Takle care

-Heather

Unfortunately Sarah it does eventually get to the point where you have to be realistic about what you can manage without more help. You have done so much it's really hard to have to admit that you can't do it alone any more and there are limited options for getting what he needs. Try not to feel guilty, you did so much for so long, but you are also just one human being.

I do hope you can find what you both need.

-Heather

Hi Asha, hang in there and "breathe" there are days where everything you touch falls apart, and fighting with company governance processes is one of the things that sets me off almost every time.  Right this instant I came onto stroke net because there's something in the work interfaces I'm trying to get setup and everyone is sending me around in circles with "that is wrong" as the only feedback.  How do you fix it when they won't tell you what they actually need you to do 😵

I guess what I'm saying is sometimes it all gets too much for all of us so back off, think about something else and tackle it again when you are calmer.  There will be an answer and you will find it or the person who can help.  Life is like this sometimes you don't have to be happy and grateful all the time.  Like Sue said, take some "me time" meditate/pray look for what you CAN do and make some new plans.  Is there a community centre near you who would have groups you can join. Something like a chatty craft circle, or book club...

Hi Sue HUGS and so pleased it all went well.  Good luck with the face ache, I hope an ice pack is enough to relieve it.

Hi Sarah, nothing to say but HUGS.  Hang in there Dan is actually a very lucky man. The way he behaves no one would blame you for just leaving him in the home all the time.

-Heather

That's cool Tracy, we love you too. and there's nowhere like home to be a blubbering mess. So glad that being in your own space is letting you do that much needed "spring cleaning" Hugs for you and Kitty!

Hugs and hope for a good result from me too.  Take care and try not to be too interesting in the hospital.

Making going out a habit sounds like a good plan, even if it's just a quick walk to the end of the street and back at lunchtime each day.  The house sounds wonderful, give it time and the neighbors situation should settle. They are just annoyed by change to a habit they formed while your place was empty. If you feel up to it one day, maybe call in and try to make friends.

Tracy's comment about the cinnamon reminded me the other thing they don't like is peppermint oil. It has to be the real stuff not peppermint flavour essence. I have it for chocolate making as anything other than oil stops the chocolate setting. I've only used it inside though. When they are coming into the kitchen I find the hole they are entering by and run a peppermint oil soaked cotton bud around it. they won't walk over it

When doing that sort of job remember before you start that Murphy loves an opportunity. So you have to be one step ahead of him. Like Sue when I lived in a house with pavers the "ant sand" and boiling water were my gotos when the little guys got too adventurous. You never completely get rid of them but they can be discouraged.  That accidental finger up the nose does sound familiar too, and of course as you are in the shower (hot steam) it seems to go on forever.  good luck with the next attempt.

Absolutely! keep on going. Hang in there, doing what you love helps!

Sarah you would love to be there and offer physical support, but it is not possible so send your love and best wishes and know that they know you would do more.  But right now if you tried to go you would be more burden than help so don't beat yourself up.

Hang in there Nancy. Good luck with combating the "no eat" card and the Casino/slots.  One time when being stubborn as a survivor is not a good trait.

yep everything crossed that the plans don't get changed

It has to happen, scared is fine.  Do your advance care plan before hand (just in case) then trust your plan and hope it isn't needed. You've got this. (((hugs)))

I'm in the celebrate it camp, too. 15 years is an achievement for both of you.  It might not be a happy memory or a good moment in your lives but it was a major change and you both got through it and it should be marked in some way. Why not have a party so long as it's not too much for either of you.  Can you ask a friend or family member to do the "work" of it?

Oh yes, Like cats you can suggest but until it is their idea it won't happen.  I  hope that you can suggest it to them, so that they can see the use. It is not that they are incapable its about speed of response and ease of mind for everyone. Maybe ask your stepmom what she would have done to get help if you had not been in the house when your dad fell. After all that will soon be the reality. At the moment she can't call for help and stay with him while she calls. The modern alarms can sense when the wearer falls and call help automatically. Who they call is completely programmable, first call could even be her, and the programming is done by the company so you/they don't have to stress about that bit, you just say what you want to happen and provide the phone numbers.

It all sounds very trying Tracy. It sounds to me like you need to get both your Dad and your stepmom emergency alert pendants that they wear all the time and then they can get help whenever they need and you can feel more comfortable about moving to your own home.   https://www.choice.com.au/electronics-and-technology/gadgets/tech-gadgets/buying-guides/personal-alarms

Some of these can also double as a very simple mobile phone. I 'm sure they exist where you are.   But do remember they are both adults and you can't try and run their lives any more than they should be trying to run yours. 💖

fingers crossed he will now use the aids he's supposed to. It is harsh that he had to learn the hard way, but so long as he learns from it and no permanent damage was done!  It is so hard to lose control of a body that has always obeyed you (as we stroke people know all too well) The loss of dignity in the middle of the night is tough. I did something very similar when in hospital last year, he only had you and your mum to see the chaos, I had at least 6 nurses and a team of doctors come running. It's funny now but at the time was anything but.

I get you! you can see what's coming and you have done your risk analysis so while you have fear you are not afraid.  It's anticipation not dread.  All fingers and toes crossed that everything works the way you want it to.

-Heather