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A check list please


Strokewife

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About day three following my husband’s admittance into the Intensive Care Unit I was beyond exhausted. I hadn’t slept, eaten, or really come to terms with what had happened. Ideally, I expected him to just wake up, ask for something to eat and say, “Let’s go home.” My husband had every monitor possible attached to him. Not to mention the revolving door of technicians, nurses, therapist, and doctors coming into his room nonstop. With every person that entered the room I ask question after question as to what was going on. I even ask the housekeeper. In my mind I needed to understand. Call it a type A personality or Obsessive Compulsive Disorder but I needed someone to define for me what the “H” “E” “Double Toothpicks” was happening with my husband. What was this thing called Stroke? What did it mean? Why did it happen to us? Who was going to tell me the truth? How was I going to fix it? Whether it was my need for sleep, my means of processing or my plain old desire to get my husband help I had a moment of complete frustration. If truth were to be told, it was more than just a moment but you get my drift. It was this day, three day in, that a caseworker introduced her self to me. It was this day that I absolutely recognized my role as Caregiver and the journey I was about to take.

 

Perhaps my circumstance was different than any other and could not be categorized. Maybe it was so unique that it was a learning experience for my particular assigned caseworker. I don’t know but when I ask, “If there was a check list to aid me in what I need to do,” I got a deer in the headlight look followed by a “I’m not sure what you are asking.” comment. I was told, “There is no checklist.” I shook my head and said “Seriously?” “There is no check list that can be given to a caregiver as to the first things one can do?” “Well, you can always check online…there is a lot of information out there,” The caseworker said. Ironically, I apologized to this individual and claimed, “I must not be speaking clearly.” “You are telling me there is not a simple things to do list that you could provide me.” Again, she said, “No” So, I sighed, thanked her for her time, and turned my attention back to my husband. My sister later confirmed for me that I was not inappropriate or out of line. She said I actually was very calm, cool, and collected asking a very reasonable question. In my mind, however, I believe my head spun around, my tongue lashed out, and I fell on the floor kicking and screaming in an unruly tantrum.

 

Please don’t get me wrong, I believe this young girl was doing her job as best she could but in the moment that I was so deprived the last thing I had time to do was surf the internet. I vowed at that moment I would create a check list when time allowed. “Your loved one is in the hospital…Start with this” This consumed my thoughts. Things like organize your important papers, contact family, write down names of physicians, list the medicines, and eat something are to name a few. It might be small but if there was a list that stated these things when one is not able to think the Caregiver’s life might have a moment of relief…

 

So, dear readers, I ask, “Why is there not a simple checklist?” “What do you think should be on the check list?” Please help me create a universal checklist that can be used by caregivers…

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Thank you Sweet Mom.  I am a simple woman and don't really require a whole lot...But, I want to help those who follow me to have peace of mind.  So your comments have answered to that call.  i agree...have your meds, dosage and docs in place.  Unfortunately for my husband...he had not been to a physician, had no meds, and didn't have a list...so it was an ongoing thing to say "No, He isn't on any meds."  "No, he doesn't have a PCP."  Crazy it is...But I will definitely add this to my check list.

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One thing I can add is get yourself a Power of Attorney document and a Medical Directive document.  We have that as well as a "Living Will".  The medical facilities and medical personnel asked me for these when I called for some medical issue or question.  There is a form you need to fill out when you take your husband to his doctor giving you permission to address his needs.

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It is very individual.  Ray was diagnosed as a diabetic at the first stroke, he was working and I was working so I had all the notifications to do.  I was 1000 kms from home so I had to have others do a lot of it for me under my instruction.  Having a stroke changes life dramatically as you have found out.  While some things are logical like finding out about the new medications, who you need to consult, further therapies needed, what the outcomes may be etc some are simple like get enough sleep, eat good food for improved nutrition for both the caregiver and the stroke survivor, giving up habits that will likely lead to another stroke for the survivor or increased stress for the caregiver.

 

That is why finding and signing up to a site like this is so essential. We need help and help is available here (on the internet).  As Lin said read the handbook, join the forums, post a blog, join chat.  We have helped people in so many ways and that has eased them into the stroke caregiver experience and helped them to sustain that role. Once the survivor is home there is a different check list to follow of course.

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When it was getting close to the time Bob would be relased from rehab, we wanted to know if there was anything services out there, like a list of ways/things/services to help us, so we'd know what to do.    Can you believe the idiot nurse sent a pyschiatrist in there to answer those?   Her point was to try to bring out the anger and pain and get him to break down.    We are UP people and that is how we are able to go forward and function.    After a few minutes of her trying to get him to 'feel bad', we looked at each other and said, "I think we feel worse for having seen you, we don't want anymore".    Cost us $40.    

 

My list for people hit with this and don't know what they should be doing NEXT, is:

 

1. realize that insurance considers ALL bathroom equipment as LUXURY items, and pays nothing on them.     Call your local senior citizens org and ask if they lend handicapped equipment (you must return, not sell off, when no longer needed).     I got:    bedside commode, slide over shower seat, safety hold on the side of tub, wheel chair, and someone had donated a ramp, I actually got!   You could also choose a travel wheelchair with small wheels (can't think of the right name, if you already are getting a wheel chair.   I got a small one, because I was not able to manipulate the large one, nor get it in the back of my rendezvous.    Also got a hemi-walker - walking help for those with big fall risk and also used in toileting (wiping).    Don't fail to use a gait belt for those with no balance, you can't 'grab' them as they go down - just doesn't work.    If you use a gait belt and have your hand on them, you can feel the first bobble when they lose their balance and pull them to use and find a center balance between you both.   I also watched his feet at first, but now feel any bobble immediately, and know his feet stubbed or got in each other's way.

 

2.  Go home and measure your doors to the the bedroom, bathroom, any where they will go.    Don't get a wheel chair that won't fit thru there, unless there is no choice because your survivor is just that big - looks like you will need to upgrade door frame size :(

 

3.   GET A LIST OF THE DRUGS THEY ARE TAKING IN THE HOSP & MAKE SURE REHAB IS USING THEM ALL (some got dropped off his list!)    then make sure you know what he is getting in rehab, and do these list match the meds you are going home with?   Problems show up there.

 

4.   Make sure a week before they go home, that you are trained how to get them up, and get them down from sitting, so you don't pull your back, nor let them fall down into the chair.    Make sure you participate in a shower training.   Make sure they work with you on getting them in and out of the car you will be using.   The small SUV we have is perfect, his but at just the right height to just sit back in it.    A low car would be so much harder to get him out of, with swivel seat needed for sure.   

 

5.   Make sure you have a list of the foods he/she can eat at release.    Before you take them home, load up on all type grocery items, so you won't need to run out when you get them home.    Our hospital had a pharmacy in it, so they called everything down and we picked it up on the way out of the building.    Otherwise, I'd have requested it called in to my pharmacy.

 

6.   For only $50 I had a transport bring him home - I had no experience yet, and didn't need to worry about getting him in that very first time.    

 

I didn't know to get the list of what the doctor 'prescribed' till the night before he went home.   Would you believe the doctor 'prescribed' a hospital bed?    I had to ask him.... uh... how do you think it's possible for me to move a king size bed and furniture all around by tomorrow morning?     Even his friends have jobs and lives of their own, I couldn't just call them up and ask them to come work all night.   This is not possible to do.   He looked surprised that this was not a simple thing to accomplish,   grrrrrrrr......

 

Along with all your house hold foods, survivor foods, and household supplies (everything so you don't have to run out soon, don't forget the handicapped supplies.   I bought 4 washable bed pads, with packages of XL disposeable pads that went on top of them.    Those got thrown, but if there should be a problem, the washable would be back up underneath.   I have to say I have more trouble with things sliding around with reg sheets.   The flannel sheets keep everything in place better.   3 urinals, one each bathroom and one in the bedroom.     If it is a man, and they are sitting on the toilet, if they pee it does NOT go down in the toilet, that's why they need to hold a urinal.   Got XL pull up disposable diapers with GUARDS, that are much easier to switch out then change full diapers, which require taking off all pants & shoes.   Tape on diapers for night, where I use the guards with the paper still on, so I can change them at ngiht by just pulling them out, rather than them being stuck down.     I use the diapers,guards and wipes (not baby) from the walmart section "equate brand" and also the COMFORT BATH CLOTH -harder to find, which is a much heavier cloth.

 

Watch your survivor!   They try things when you aren't watching, and end up on the floor.   Don't trust that they know better.    And if you are the one showering them, don't put the water on full force, but smaller so it's soft.    My husband cried and prayed during his showers till I figured this out.    The nerves are so much more sensitive for many after a stroke, and translate as pain.

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One thing I can add is get yourself a Power of Attorney document and a Medical Directive document.  We have that as well as a "Living Will".  The medical facilities and medical personnel asked me for these when I called for some medical issue or question.  There is a form you need to fill out when you take your husband to his doctor giving you permission to address his needs.

Thank you for your comment.  I am total agreement with you on this one.  I fortunately do have all these things but you are correct I was asked for this information constantly.  This definitely will be on the list.

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You might have a look at Stroke Network's Caregiver Handbook. It was written by members of this network. Just click on the image of the book at the bottom of the screen to view the free handbook.

http://www.strokecar...rg/handbook.htm

Thank you for taking the time to comment on my blog.  I have read the handbook and found it very useful.  When I am talking about a list it is in the first moments when an individual is admitted and the loved one has abruptly been thrust into a world of stuff to do.  I plan to use the handbook as a reference in creating a list.

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It is very individual.  Ray was diagnosed as a diabetic at the first stroke, he was working and I was working so I had all the notifications to do.  I was 1000 kms from home so I had to have others do a lot of it for me under my instruction.  Having a stroke changes life dramatically as you have found out.  While some things are logical like finding out about the new medications, who you need to consult, further therapies needed, what the outcomes may be etc some are simple like get enough sleep, eat good food for improved nutrition for both the caregiver and the stroke survivor, giving up habits that will likely lead to another stroke for the survivor or increased stress for the caregiver.

 

That is why finding and signing up to a site like this is so essential. We need help and help is available here (on the internet).  As Lin said read the handbook, join the forums, post a blog, join chat.  We have helped people in so many ways and that has eased them into the stroke caregiver experience and helped them to sustain that role. Once the survivor is home there is a different check list to follow of course.

Thanks for your comments.  I appreciate you sharing your experience with me.  It does comfort me.  I find blogging or writing in a journal most rewarding.  As I read comments all have shared I realize there are several list I likely should create.  For now, I am starting with the one in which I believe could be useful to any party entering the hospital, not exclusive to stroke survivors.  Yet, I hope I can move forward gracefully as a stroke survivor's caregiver because all that you have shared.

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When it was getting close to the time Bob would be relased from rehab, we wanted to know if there was anything services out there, like a list of ways/things/services to help us, so we'd know what to do.    Can you believe the idiot nurse sent a pyschiatrist in there to answer those?   Her point was to try to bring out the anger and pain and get him to break down.    We are UP people and that is how we are able to go forward and function.    After a few minutes of her trying to get him to 'feel bad', we looked at each other and said, "I think we feel worse for having seen you, we don't want anymore".    Cost us $40.    

 

My list for people hit with this and don't know what they should be doing NEXT, is:

 

1. realize that insurance considers ALL bathroom equipment as LUXURY items, and pays nothing on them.     Call your local senior citizens org and ask if they lend handicapped equipment (you must return, not sell off, when no longer needed).     I got:    bedside commode, slide over shower seat, safety hold on the side of tub, wheel chair, and someone had donated a ramp, I actually got!   You could also choose a travel wheelchair with small wheels (can't think of the right name, if you already are getting a wheel chair.   I got a small one, because I was not able to manipulate the large one, nor get it in the back of my rendezvous.

 

2.  Go home and measure your doors to the the bedroom, bathroom, any where they will go.    Don't get a wheel chair that won't fit thru there, unless there is no choice because your survivor is just that big - looks like you will need to upgrade door frame size :(

 

3.   GET A LIST OF THE DRUGS THEY ARE TAKING IN THE HOSP & MAKE SURE REHAB IS USING THEM ALL (some got dropped off his list!)    then make sure you know what he is getting in rehab, and do these list match the meds you are going home with?   Problems show up there.

 

4.   Make sure a week before they go home, that you are trained how to get them up, and get them down from sitting, so you don't pull your back, nor let them fall down into the chair.    Make sure you participate in a shower training.   Make sure they work with you on getting them in and out of the car you will be using.   The small SUV we have is perfect, his but at just the right height to just sit back in it.    A low car would be so much harder to get him out of, with swivel seat needed for sure.   

 

5.   Make sure you have a list of the foods he/she can eat at release.    Before you take them home, load up on all type grocery items, so you won't need to run out when you get them home.    Our hospital had a pharmacy in it, so they called everything down and we picked it up on the way out of the building.    Otherwise, I'd have requested it called in to my pharmacy.

 

6.   For only $50 I had a transport bring him home - I had no experience yet, and didn't need to worry about getting him in that very first time.    

 

I didn't know to get the list of what the doctor 'prescribed' till the night before he went home.   Would you believe the doctor 'prescribed' a hospital bed?    I had to ask him.... uh... how do you think it's possible for me to move a king size bed and furniture all around by tomorrow morning?     Even his friends have jobs and lives of their own, I couldn't just call them up and ask them to come work all night.   This is not possible to do.   He looked surprised that this was not a simple thing to accomplish,   grrrrrrrr......

 

Along with all your house hold foods, survivor foods, and household supplies (everything so you don't have to run out soon, don't forget the handicapped supplies.   I bought 4 washable bed pads, with packages of XL disposeable pads that went on top of them.    Those got thrown, but if there should be a problem, the washable would be back up underneath.   I have to say I have more trouble with things sliding around with reg sheets.   The flannel sheets keep everything in place better.   3 urinals, one each bathroom and one in the bedroom.     If it is a man, and they are sitting on the toilet, if they pee it does NOT go down in the toilet, that's why they need to hold a urinal.   Got XL pull up disposable diapers with GUARDS, that are much easier to switch out then change full diapers, which require taking off all pants & shoes.   Tape on diapers for night, where I use the guards with the paper still on, so I can change them at ngiht by just pulling them out, rather than them being stuck down.     I use the diapers,guards and wipes (not baby) from the walmart section "equate brand" and also the COMFORT BATH CLOTH -harder to find, which is a much heavier cloth.

 

Watch your survivor!   They try things when you aren't watching, and end up on the floor.   Don't trust that they know better.    And if you are the one showering them, don't put the water on full force, but smaller so it's soft.    My husband cried and prayed during his showers till I figured this out.    The nerves are so much more sensitive for many after a stroke, and translate as pain.

Thank you for this list.  I feel we are much the same...as I did a lot of this too.  My husband also sent his Psychiatrist away.  He told her she was far more depressing than how he felt in any day he had been going through all this.  I find it interesting how something so simple as a bed side toilet is looked upon as luxury.  They called us upon discharge from the rehab to say it wasn't covered by insurance...Why they waited until the last minute never made sense to me...Anyway, I appreciate your list and will use it.

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The disturbing part of this is that they go thru this everyday with medical equipment and they already know that it is never covered.    It's like they are trying to get you to take it home at the last minute before you have a chance to try something else.   I forgot to mention one thing, and I will also add it to my list, incase someone just reads that:    I also got a hemi-walker from the senior organization.    He used that to walk because he had no balance, and of course, in the beginning he wore a gait belt which I always held in the back and shadowed his every step.    With loss of 60% of his vision, it made his balance even worse, because he would run into every door frame, which could either drop him back or pitch him forward.    ANYWAY, the hemi-walker - he no longer walks with it, but uses a 4prong cane to walk with and can walk a minimal distant, like from room to room, or from car to doctor office, with close up parking, not parking away from the building.    But, now it is down to one use:   He can feel when he has to go #2 and so we generally make it there without problem.   When it's time to wipe, I don't know how I'd get the job done without the hemi-walker for him to bend over.    

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I'm adding this in down here from my above post edit:

 

Don't fail to use a gait belt for those with no balance, you can't 'grab' them as they go down - just doesn't work.    If you use a gait belt and have your hand on them, you can feel the first bobble when they lose their balance and pull them to use and find a center balance between you both.   I also watched his feet at first, but now feel any bobble immediately, and know his feet stubbed or got in each other's way.    I like his up under his boobs - we are about the same height, so this height helps me save him faster than a low gait belt height, when he would be half over before the belt kicked in.   The center of balance works like this:   Notice how people who weigh a LOT do not lose their balance, but keep it just like skinny people?  Well, it works the same with 2 people.   You can't stop them when they are on the way to the floor... you can only slow them down.    BUT, if as soon as the first sign of off balance hits, you pull them to you and make their body weight merge with yours, you become like that overweight person and can center your balance, not between 2, but between one as the 2 of you become one weight, with one center of balance.     He has had no falls, since I started the pulling him to me and center us both into one weight.

 

For those who were not trained correctly, the correct way to help a person up and down with their gait belt, is to squat a bit, then you MUST stick your butt up and out.    This releases your lower back muscles.   If you fail to do this, you will pull your lower back out, and a caregiver has no down time!

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I expect that my husband would have loved such a list during those first, chaotic days - though I had always been the "list person" and he often joked about that. You have received some great ideas here. One thing I would emphasize strongly is that list of contacts you mention, detailed and prioritized. This was one of his bigger frustrations, especially since we were far away from home when I had the stroke. Thank you for your efforts with the medical community; hopefully, someone heard you or will remember your request and the information will be made available in the future. Perhaps someone will even receive an employee reward for the suggestion!

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