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Benni

For impatient caregivers ....

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How a stroke survivor feels when their caregiver is too impatient ....

 

I am frustrated. I am nervous, stressed out, overwhelmed, and confused. 

Today I woke up and wanted to get dressed by myself but was told “No, we don’t have time, let me do it.” 
This made me sad. 


I wanted to feed myself for breakfast but was told, “No, you’re too messy, let me do it for you.” 
This made me feel frustrated. 


I wanted to walk to the car and get in on my own but was told “No, we don’t have time, let me do it.” 
This made me angry.


I was not allowed to dress myself or move my own body to get to where I needed to go. I’m angry and frustrated and sad. I’m tired. I do not feel safe or in control..
I am not allowed to practice my skills of walking, pushing, pulling, zipping, buttoning,  or doing things that I know I can do. These are the things I am NOT allowed to do.

I am frustrated. I am nervous, stressed out, overwhelmed, and confused. I need a hug.

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Benny I'm sending you many hugs. As difficult as it can be for caretakers as well as the stroke survivor...validation and support is so important. I know how hard it can be to experience this and know I have no control (or feel like it). One of the biggest and best lessons I have learned for myself is to put my foot down when needed, not take no for an answer when it comes to my independence, and not to accept less than I deserve. Just know you can't change others but you can change you. Even when others don't approve. Hugs hugs hugs.

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Good for you! You sound much more emotionally grounded than you did a year ago. 

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It's good to see you both posting again.  I missed you guys.  Both of you deserve a big hug!  :hug:

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Back at ya, Steve!

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Benny :

 

sending you hugs still go ahead & do things you want to do, unless you do it regularly you will never become efficient & faster in it. or another thing is start getting ready early before him so that you have ample time for you to get dressed & be ready first. I know I fought tooth & nail for my independence, even got myself driving again.

 

Asha

 

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Benni, Hugs are coming your way! Me, too. Same thing. I don't know what to do about it either. I'm slow, know I'm slow, and still need help with a lot of things. I have tried putting my foot down, but it's useless to do so, when you're asking patience of someone who.....has no patience!!!!!I just do what I can, when I can. Becky

 

 

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Thank you Benni in so many ways I am. I am still working on it. It is really great to get to talk with you guys.

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Benni, thanks for posting this!  I recently "fired" one of my workers who was supposed to be helping me by taking me places and assisting me if needed with filing government paperwork, grocery shopping, etc.  I was always very clear with her about what I needed her to do and what I planned to handle myself, but she would get impatient and try to take things out of my hands (literally, at the grocery store) or walk away and leave me to deal with the government workers on my own.  I finally decided enough was enough, especially as her attitude was growing worse with time, so I asked my caseworker to find me someone else, and she has done that.  They haven't started yet, but I'm eager to give them a try and see how it goes!

 

I guess people think that making sure our physical needs are taken care of is what it means to help us.  While that is part of it, there is also the part of helping us heal by encouraging us to practice our independence and reach for more and more of it.  When someone supports me in doing that, then I feel like they are truly helping me.  Caregiving is like being a parent:  Sure, it's quicker and easier to just jump in and do all the household chores instead of letting your child be responsible for some of them, but in the long run, all you'll do is create an adult who thinks the world should take care of him.  We need people in our lives who understand that the long-term goals of recovery are more important than the short-term goals (like rushing to make appointments).  If the schedule isn't allowing us room to heal, we don't need to give up on recovery; we need to change the schedule.

Okay, I'm preaching to the choir here, so I'll step down off my soapbox now.  :raising-cane:

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Guys -- this wasn't about me personally! Hubs is a great caregiver. It was something posted on another site, I thought it'd be a good wake-up call for other caregivers.

 

Sorry for the misunderstanding.

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Oh, I'm so sorry I misunderstood.  But it was still nice to read as it so well expressed how I've felt in the past with some of the not-so-good caregivers I've experienced.  I am, of course, ever so grateful to those who truly do care and go out of their way to make sure I get the things I need - what would I ever do without them?!

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It is one of those things that some caregivers don't "get". We need to have a sense of control over our lives!  I was so lucky that when I came home from rehab Mum and Dad said we'll help whenever you need but you need to ask for help we aren't going to step in until you do.  And they were happy to leave me on my own as soon as I said I was confident I could manage, well that was the impression they gave me. I suspect they were worried but also knew that I needed them to let me get on with it.

 

These days they tend to ask "would you like help with that"  and the difference between "need" and "like" and "want" is very important.

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I've had friends who don't "get it". For instance, I have a lady come in every 2 months to cut my hair. On one visit I was bragging to her that I had colored my hair all by myself (one-handed), I was so proud. She said "Oh, you should have called me to come do it for you." Thus she did not "get it" at all.

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My wife tends to leave me my own devices with a very few exceptions. Because my hands get unsteady she drains grease and hot water when cooking. When I do kitchen knife work she makes sure I wear my knife safety gloves, they've saved me more than once.

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20 hours ago, scottm said:

Because my hands get unsteady she drains grease and hot water when cooking. 

Ditto, Scott.

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I guess that I am lucky.  My wife is my primary caregiver, and from day one has insisted that I do as much as possible myself.  She will often refuse to help and make me figure things out.  This can be frustrating for both of us, especially as my biggest issues are cognitive; it can be frustrating when I have do complete bureaucratic paperwork and she refuses to give me dates and makes me figure them out by myself.  This can also be painful for her:  I can remember exactly where we were married, details about the reception, who was there, but not the date.  I can work out roughly what year it was by working out how long I spent in school, at university, etc.  While she understands that this is neurological, it make her feel that it doesn't really matter to me.  Then again, I have to calculate my age whenever anyone wants to know it (at least I remember my birth year :-))

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Well, I just gotta boast about my caregiver. From the moment I returned home from the hospital she realised that as a very stubborn and independent person I was going to fight things my way. She hovered around keeping an anxious eye on me but didn't do anything for me unless I asked. This amounted to some messy tables after a meal and a lot of laughs. I made sure that she kept up her private life of club meetings and Red Hat engagements, which was the only thing I could do. We have been married 58years.

I'm in my fourth year now and still improving though things are very slow.

Deigh

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On ‎3‎/‎10‎/‎2018 at 11:07 AM, Benni said:

How a stroke survivor feels when their caregiver is too impatient ....

 

I am frustrated. I am nervous, stressed out, overwhelmed, and confused. 

Today I woke up and wanted to get dressed by myself but was told “No, we don’t have time, let me do it.” 
This made me sad. 


I wanted to feed myself for breakfast but was told, “No, you’re too messy, let me do it for you.” 
This made me feel frustrated. 


I wanted to walk to the car and get in on my own but was told “No, we don’t have time, let me do it.” 
This made me angry.


I was not allowed to dress myself or move my own body to get to where I needed to go. I’m angry and frustrated and sad. I’m tired. I do not feel safe or in control..
I am not allowed to practice my skills of walking, pushing, pulling, zipping, buttoning,  or doing things that I know I can do. These are the things I am NOT allowed to do.

I am frustrated. I am nervous, stressed out, overwhelmed, and confused. I need a hug.

Benni,

  I can't even begin to say how true every statement you said was. I just has this conversation with someone this week on this.

See the source image

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Glad you liked!

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Well if they think it will save time doing it for you ....then let them see how much time is wasted as you insist on doing it yourself.

 

Glad that one was fired.

Showed her who was in control:frustrated:

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