heathber
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Blog Comments posted by heathber
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Hi Kelli, So glad you did this. My first alone plane trip after the stroke was scary but successful too and since then I've been overseas twice. You are so right that it's OK to ask for help and in fact many people offer it unasked. And there's no point in stressing so long as you have your phone and someone you can call if it all goes truly pear shaped.
Next time will be easier. If you can do this without your glasses, think what you can do once you have them!
Onwards and upwards!!
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You got this Carol. There's lots of places still to go and things to do in them. So you do it differently you still do it!
Enjoy
-Heather
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A friend of mine used to put herself into respite care, I think she used it as a way to explore nursing home life before she actually had no choice. When at home she had care workers coming in morning and night to get her out of and into bed and cook her evening meal, and assist with showering and dressing. Her adult son lived in the house with her but they chose not to have him do the actual care tasks. As she didn't want her disability to completely take over his life.
Can you get a regular care worker to come in and do the larger/harder jobs so that you don't feel so overwhelmed? Or will having him do a nursing home "holiday" so you can get a break help?
If you get someone to come in and sit with him for a few hours each week you can find something to do for yourself in that time such as joining a book group or art class or one of those other lost activities you miss.
Burn out is real and you need to take action.
-Heather
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Hi Pam I say go for it!! What's wrong with a bright colour if it makes you feel good. Defy stereotypes, have fun, FEEL GOOD. They are just jealous that you have someone who will take you out of the box when they have to stay in.
If you can start an Art Therapy program or encourage the management to arrange one that would be good for everyone. One of the best spots in my days when I was at inpatient rehab was art therapy. They had a dedicated art room with all the equipment and an art teacher with an assistant who came in for 2 hours twice a week and helped so that everyone could participate. and it's amazing what can be done with a glue stick and some scissors if someone isn't feeling up to fine work. They had some very clever stands to hold things so those of us limited to wheelchairs could draw comfortably and sessions were open to all areas of the hospital including the outpatients if they had a way to get there. Each year they hold an art show and they take a selection of the work created that year and get it properly framed and the artists all get invited to opening night. It was fun!
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Oh Nancy, How horrible you must feel. Do not beat yourself up over this. Tell him NO you are not going to take him to the toilet your dinner will get cold, he needs to call the aid. If he has an objection to a particular aid then that's something you might be able to help him with, but he lives there now because you could no longer do this stuff for him and you are a visitor not an aid. He's trying to guilt trip you, don't succumb. Time for tough love. Point out to him that when he doesn't shower he's not nice to visit and next time you come if he hasn't showered you won't stay. and stick to it.
You need to make sure that when you are there you do not do anything he should have an aid do. If he asks you to do something that an aid should do call the aid and step back until it's done. If he wants to play control games take back the power.
When you visit you need to do the things the aids won't/can't like play games and go for a walk. Help him to distinguish between care activities and visiting activities
Hugs its not a nice situation to be in.
-Heather
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Asha I would not be game without the expert help from the Program. It's called "Return to Running after Brain Injury" and was designed by a Specialist Physiotherapist here in Melbourne. He runs it through the outpatients service at one of our Hospitals. They offer 3 group sessions each week, I can only get to 1 a week as I work full time, they recommend you do 2 sessions a week, but as I also do homework with my gym trainers that's considered sufficient. The group is divided into 2, beginners work in the physio department with specially designed exercises to increase strength, balance and coordination as well as to develop fast twitch muscle responses, the more advanced group works outside either in the carpark or at a local park, working on stamina, agility drills and general technique.
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Thanks Pam So nice to share with people who get it.
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If they are silly enough to put those displays in the store aisles It's their problem not yours. I hate crowded shops with bits sticking out everywhere, my left arm knocks things over. I love to shop at the market. I think I cost some of the store holders more money than I spend, but as I said that's their problem not mine, and Banjo wouldn't even get into these stores the space left is so narrow.
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Oh yes wjy do those of us in that mid range get so little support? I was 45 when I had my stroke and I learned very fast that I had to fight to get "the system" to acknowledge that I needed to access the help provided for senior citizens. And yes those family change rooms are marvelous things, I wish they were more common.
Water therapy makes a huge difference it makes so many movements that you can't do on land accessible, It's mostly because the water provides support against gravity. as I learned quickly and still say constantly "gravity sucks".
Your idea of a spa sounds brilliant. The thing that I want is the ability to hire a care with the hand controls I need. I've heard that this is available in the US. It certainly isn't here in Australia and it means if I go on a holiday I have to drive there (i.e. bring my car with me) or fly and then rely on buses and taxis. which is never easy in a strange town. It's not like the hand controls are expensive com[pared to the cost of the car and they don't stop the car being usable for other drivers.
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Hi Tracy, I just want to echo Pam's response. All our past experience leads to who we are now. You don't want to forget but you do need to forgive (both yourself and Adrian) and move on. We've all made decisions and done things that in hind sight were a mistake but they still helped us evolve and going backwards doesn't work.
As you are finding its often hard and lonely but there are people around you who care and who are doing what they can to ease your journey. You are loved and worth loving. Hang onto that thought, and be the butterfly not the caterpillar.
Also remember we love you too
-Heather -
Asha I hope the times you need to list the things you can't do are few and far between. It's always disheartening to look at the "can'ts" in your life especially when you need to list them all at one time for someone, I do wonder if the people who create things like insurance forms realise how debilitating they are.
As Jay said look at the things you love but also look at what you can do. When you have to list your "can'ts" balance them with a list (at least in your head) of your "cans". Life was not perfect before your stroke, and it no less perfect now. OK so I'll probably never make pretty cupcakes again but I can make a mean banana bread.
Just don't let one bad/blah day turn into a lifetime of them
You got this
Heather
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Oh yes the pain of what "kids say" when you are the nice kid from the small school coming into the big school where you don't know the "code". Been there done that and it was brutal enough without ADD. Good on you for surviving and it does help to remind yourself and put those words into context.
We are both good people and worth it and we don't have to believe or listen to the negative talkers from our past any more. I still need reminding occasionally too that I am not that person. Glad you found a good coach.
-Heather
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Hi Tracy, As Lin said being stingy by putting yourself first is not anything to feel guilty about. Having a plan is a great first step and you have done that. But also like Lin said please be careful with the sun exposure. I also come from a country with scary rates of skin cancer, and yes you need some Vitamin D, but a tan you don't really need or want. And also I have learnt the hard way since my stroke sunburn knocks you around a lot more now than it used to, so you really don't want it and clouds do not stop UV so those overcast days are the most dangerous because you don't feel the sun. Other than that I love your recovery/improvement plan and I sort of wish I could join you. I hope there's a garden for you at your Dad's.
Take care and have fun
-Heather
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As usual Tracy I love your poetry, the world is not all sunshine and emotions have to go outward or you'll curl up around them which is very bad for you. So glad you have found a way to send this stuff out of yourself.
We hear and love you "this too shall pass"
I know you'll find a way forward.
Hugs
-Heather
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Kelli, You've explained it really well. I have a nephew with ADHD, and the flack we got as his family for putting him on "drugs" when "his problem is just poor parenting" He also was diagnosed with learning difficulties due the the ADHD. As a young adult now he manages it very well (I have no idea if he still uses the medication, or if he's learned coping skills). But I hate to think how hard it must be to manage combined ADHD and Stroke effects. What we found with my nephew was that he could concentrate on a single task but only by completely blocking out every other thing. When he was doing something he wanted to focus on he would shut out every other stimulus, including the demands/needs of his own body. It was sort of scary.
Hugs
-Heather
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That's wonderful Kelli I'm so pleased for you. I had a similar response when I was finally referred to the surgeon to fix my shortened calf muscles. In my case only 5 years after asking EVERYONE if there was anything that can be done to make my leg more functional. My miracle man was also a pediatric specialist. You feel slightly silly sitting his waiting room but what the heck if he can help.
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Change can be tough but it often helps to get out from under each other's feet. My sister and I fought like cats when we lived under the same roof but once we each had our own lives we got on much better and are now good friends. We even choose to go on holidays together sometimes.
Also while I love my mother I could not live in the same house as her for very long without us both blowing a fuse.
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a pinch of cayenne and/or chilli powder with some coconut milk is also very nice
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Sue your blog today makes me think of the quote from Trainspotting (probably prompted by it being in the news so much the last few weeks) "Choose Life"
If your traveling brings you down this way let me know and we can meet up, go to a gallery or something
ENJOY is a good goal word for the year I may borrow it.
-Heather
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Tracy that is so beautiful and expressive. I do hope that writing it down helps you to deal with this feeling.
I agree with David, "may you forever have "no idea of the right way" !"
Hugs
-Heather
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I approve of that system. I do something similar for my work. I keep a list of what has t o be done for the month that includes the pre requisites for everything. and at the end of each day I go through the file and mark things in different colour according to their status. Then the start of each day is reviewing the list and colour coding what has to get done today. things don't usually get crossed off my work list as the routine repeats each month, but that sense of acheivement when it's all coloured in green at the end of the month.
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Keep it up as long as you can Tracy. I enjoy checking your list against my mental one.
So glad to hear that your energy levels are going well at the moment. It makes a big difference once the fatigue starts to taper off. Just remember not to overdo it as this is the danger period where you start to push limits and every so often they bite back.
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A couple of photos - I hope the security setting lets you all see them
Where Did My Smile Go
in SassyBetsy's Blog
A blog by SassyBetsy in General
Posted
I seems to be one of those things where the automatic muscles still work but the voluntary ones don't. So if I'm smiling because I'm just smiling it looks pretty normal. But if I'm smiling because some wants me to the left side of my face doesn't really respond. maybe because when you try to smile you concentrate on the mouth, but when you just smile lots of other things happen (particularly around your eyes)
Pam I wouldn't worry about it, if you try to force it it will never look right so people will be just as "put off". Try not to think about it and just let it happen.