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    Old 05-23-2013, 06:04 PM   #1
    daughter 01
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    New here... just think this is the group with the answers... not the doctors

    My dad had a stroke April 6 while he was on vacation out of the country. He became paralyzed on his left side. They gave him great care, but our goal was to get him back to the U.S. as soon as he was stable so he could get the best possible care. Once we finally got him back home, it took 10 days of him just laying in his bed doing nothing for the insurance company to finally give approval for him to get to a rehab facility. The issue was that since he was stable, it was not an emergency and he has an HMO.
    He is in rehab now, it has been 3 weeks, and he has shown great improvement but they say his time there is up. He is still paralyzed but he can move with help. From the bed to the chair, chair to restroom, he needs help. The doctors tell us that the most improvement he would have shown would have been in the first 4 weeks. After that, he won't improve much more. My dad used to exercise everyday, he loved doing crossowords and sudoku. He ate plenty of fruits and veggies. He was a relatively healthy 72 year old man. He had a kidney transplant about 30 years ago, and overcame it against all odds.

    I am recently married and we just moved into our first home last month. It is a one story home. My parents lived in a townhouse with many stairs. We have decided that they should both move in with my husband and myself. I feel blessed that I am able to help them in this way. But the doctors and nurses are so bleak...even though his progress has been amazing. Does anyone out there think that he would be able to walk again? I want to be able to give my mother some hope.

     
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    Old 05-23-2013, 07:01 PM   #2
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    Re: New here...just think this is the group with the answers...not the doctors

    Another question I had was that once they release him, they want to give him home health therapy instead of outpatient therapy. I think the outpatient therapy would be better for him because it keeps him moving, getting in the car, out of bed, etc. But I really don't know too much about this. What do you guys think would be a better therapy option, at home or on an outpatient basis at the rehab center?

     
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    Old 05-23-2013, 08:31 PM   #3
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    Re: New here...just think this is the group with the answers...not the doctors

    Hello daughter and welcome. First of all, I applaud you for offering to take your parents in. That is special and I admire you for that!

    It has been almost 1 year since my stroke. I am glad your father has been in rehab. It is very important in recovery. In my opinion, there is no timeframe for rehab. Stroke patients are at huge disadvantage because every stroke is different. Also, many of us survivors are not disfigured so it's difficult for others to know what we are feeling and most of the time we don't even know. I've never had problems with depression or anxiety until my stroke and that has been a real eye opener. The stages of my healing have been like a roller coaster. Up and down and round and round. Pain is worse now than before. We struggle to stay positive every single day. I am thankful that I am still able to care for myself.

    I encourage you to share your experiences here or join a support group. It really helps to talk about it. We may not have the answers but we can definitely share our experiences with you.

     
    Old 05-24-2013, 12:51 PM   #4
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    Re: New here...just think this is the group with the answers...not the doctors

    Thanks for the hug Shug and thank you for the reply Iwamura. We had a home evaluation today where the occupational therapists and my father came to my house for a visit so they could tell me what improvements or adjustments I need to make to my house. My dad was so nervious to leave the rehab hospital, he started crying telling my mother how sorry he was that his happened to him and how hard life was going to be from now on. He broke my heart. I think we cheered him up. I read through many of the experiences here on this site and shared them with him, he was amazed at the progress so many people have made. I just want to thank everyone on this site for sharing their story, it has really helped me share your experiences with my father. I know it will be an adjustment, but I am sure it will get better and easier as time goes on.
    The OT gave me a book to read called "Living with stroke: A guide for families". I wonder if anyone has read it or what they think? I am going to start now.
    Anyways, thank you again for giving me a place to talk about this. I think we will look into a support group, I think both my mother and I will need this, that is a good idea Iwamura.

     
    Old 05-28-2013, 02:48 PM   #5
    Sandy Caregiver
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    Re: New here... just think this is the group with the answers... not the doctors

    >The doctors tell us that the most improvement he would have shown would have been in the first 4 weeks.

    -This is just sooooo NOT true! When my husband came home 5 weeks of rehab, he had 100 days of inhome therapy, because all he could do was stand with gait belt assistance, and pivot from wheelchair to bed, and vice versa. When that was up, he was walking with gait belt asistance and a hemi-walker (half a walker, made for those with one functional hand. A full walker would tip over with a one handed person).

    He is 14 months out, and is now walking with a gait belt and cane. He still needs the spotting with the belt, because he has bad balance and vision cut, which causes him to run into door frames. Sometimes he catches his toe, and can trip. He also has a little problem with comprehension, and does not learn to scan to see his 'blind' side.

    But, he can walk like this to the car and to the inside of the therapy out patient - so I don''t have to take the wheelchair. He cannot just go to Walmart and walk around though. It's work for him, not something like we just do without thinking. Because of his balance and vision problems, I don't know if my husband will be able to walk ALONE again, but he can walk!

    Talk to your insurance and find out what your allowances are - every policy is different. Mine allowed for 100 days inhome, the 60 outpatient. The inhome is 100 days, or until they become mobile enough to go places. As I explained to my therapists, going straight to outpatient would leave him with 60 days of therapy, and he'd lose 100 days of therapy from the missed in home therapy. Once you do out patient, you usually can't go back to in patient, unless something else happens. I also found that, with my insurance, anything he did in one day, counted as one of those therapy days. So I don't have speech one day and pt the next, because if I have them on one day, it only uses one therapy day. That way I get more sessions by getting as much into one day as I can. But all insurance is different. Ask them:

    1. how much home therapy does he get per year?
    2. how much out patient therapy per year?
    3. (I don't know if he is just getting pt or speech & ot, but if he gets more than one type) ask if it is by session or all you do in one day is counted as one of your therapy days used up.

     
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    Old 05-29-2013, 05:48 PM   #6
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    Re: New here... just think this is the group with the answers... not the doctors

    Oh, thank you so much for this advice Sandy! I will call his insurance company tomorrow morning to confirm about his therapy. My father is in the same position as your husband was. He can stand with the belt, and just pivot from the chair to bed, and such. I am so happy to hear your husband can walk, that is fantastic news. My dad also has balance problems, the OT says he has trouble finding his center. He wants to sit at a slant because to him this is straight.
    I appreciate the advice about all the therapies in one day also. He is getting OT, PT, and Speech therapy.
    The insurance companies are another group that is driving me nuts! First being put on hold, then transferred 10 times, it seems as if they do everything to make life harder rather than trying to help make life easier during this difficult time.
    My father came home today to live with us permanently. I hope it will be an easy transition for him, and well for us all. I just want my dad to get better, and I want my mom to not be so stressed out.
    Anyways, I really appreciate the advice, thank you!

     
    Old 05-29-2013, 06:29 PM   #7
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    Talking Re: New here... just think this is the group with the answers... not the doctors

    It's important that you assist him to rise with the correct posture, or you can ruin your back and be useless to help! I like his belt just below his breast area, buckle in front. I stand directly in front of him, and squat. Now stick out your butt. Not just like you are hunkering over, but if you stick it out far enough, you will feel it rise. This is important! Because until you feel that, you are still going to be using your lower back and will strain it. Then in that position, I put my finger under the bottom of the belt, thumbs on top, and draw him up to me. Insist that they stand and stabilize before trying to walk, and stand up a little. But walking comes later, now you say he is just able to pivot and transfer.

    I use Assurance Max adult diapers and put a max strength guard in the front, as my husband has no control. At night I use the tape on ones, and can open them in the middle of the night and pull the old one and stick in another - I don't remove the sticky tape at night, so it pulls out easy. Your mom will probably be the one to do this, if he needs it. Remember to save all these receipts for taxes!

    I am very good at this, and feel blessed that God gave me the strength to do it! I love having my husband with me

    Last edited by Administrator; 05-30-2013 at 05:47 PM.

     
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    Old 05-30-2013, 12:19 PM   #8
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    Re: New here... just think this is the group with the answers... not the doctors

    Many blessings to you Sandy. Thanks for your tips and advice. The way the OT's taught us to have him stand is to scoot his bottom forward as far as he can (he can scoot) then he can use his strong right side to push up while we hold on to his underarm just as a guide on his weak side (left side). He can stand, and then sit back down. With the OT he has been able to take a couple steps...this is not something I am comfortable doing with him at home. He does not have complete confidence in me yet..so he starts to shake after standing too long too...about 30 seconds or so is as long as he can do it with me. With the OTs he is fine for much longer. Well, I suppose it is a learning process for all of us.

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    Old 05-30-2013, 02:38 PM   #9
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    Re: New here... just think this is the group with the answers... not the doctors

    I'm in shock that they did not make you buy a gait belt to assure safety with him. Mine was ordered with some other things and I had them the night before he left rehab Most people have pain in their stroke side and really don't want someone using it to steady them. I would get one, it is the only way to be sure. Also, if they start to fall, don't grab an arm as the floor is an arms' length away, and they can still fall to it. You pull them to you, and your own body takes their weight on as if it was its own, and balances it. But that is harder to do fast without a gait belt, and seconds count when they lose their balance. Really, each second, because if you don't save them in the first 1 or 2 seconds they are 2 far down for you to bring their weight into your own, and you lose them.

    By the way, you can pick up many different handicapt things for free loan from the senior citizens organizations. I got a shower seat slide over, tub standing support handle, bedside commode, wheelchair, ramp(real lucky on this one) and a hemi-walker.

    Last edited by Administrator; 05-30-2013 at 05:48 PM.

     
    Old 05-31-2013, 08:59 AM   #10
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    Re: New here... just think this is the group with the answers... not the doctors

    Oh no, they gave us the belt, I guess I just don't see the importance of it to just transfer him to the bed or chair. Do you think it is. I did notice last night that I sat him down on the sofa so he could watch TV (he enjoys watching the basketball playoffs) we had major trouble getting him up from the sofa and had to do the transfer about 3 times before we could get him on his wheelchair. It would probabally have been a better idea to use the belt. I did have to bend down low, okay...now that I'm talking it through, I see your point.
    The insurance company has given us the beside comode, the transfer shower bench, and the wheelchair. So I think all we need to get now is the ramp for the front door as it is pretty steep and my mother can't raise his wheelchair up the front step. She weighs about 100 lbs and my dad weighs about 160. She is 74 years old and is home with him while my husband and I are at work, so I need to make sure she can handle all of his needs mostly. We also need the grab bars for the shower. In the acute rehab facility, they had a little flat table that went above his arm rest so he could lay his paralyzed arm flat...I'm trying to find where I can find that little table as it really seemed to help him. His arm gets swollen otherwise. I will take your advice and look for a local retirement community to see if they offer any of those items. Is that what you mean or were you referrning to a nursing home? What kind of senior citizens organizations should I look into?
    I've been reading some past posts as I like to share other people's stories with my dad to give him inspiration, and I came across a post you wrote about needing to sell your old house and having to do the work yourself. We are coming across that problem now also because my parents had a townhouse with 3 levels of stairs. Obviously my dad can't live there anymore, so my husband and I have decided to have them live with us. But we need to empty out the townhouse so that my parents will be able to rent it and hopefully use that income to help pay for nurses and other costs they will need as well as helping us with groceries since we are now a family of 4. (my husband and I just got married last year) =)
    Anyways, we are having a hard time finding the time to get down there and pack and do what needs to be done, their house is about an hour away from mine. I would love to hear any advice you have for this situation.

     
    Old 05-31-2013, 11:16 AM   #11
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    Re: New here... just think this is the group with the answers... not the doctors

    Senior Citizens organizations are the places they go to dance, play cards. Do a search on the internet with your city name, like if the city was Winston, you'd search under Winston Senior Citizens. It is a surprise to hear that your insurance paid for those things, as generally, they consider bathroom equipment a 'luxury'!
    We have 2 bathrooms, and since he no longer needs the bedside commode by the bed, I have put one over top the toilet in a second bathroom, and the other bathroom has a seat riser on it - usually you don't see those second hand, they can be kinda nasty to think about. But it makes it so much easier for them to stand again, not having to sit so low. The rehab had all that stuff 'ordered up' for him, but I put it to them like this, "don't order anything my insurance doesn't pay for" and suddenly those things disappeared off the order - so it's possible, you'll still see the bill for them. You will need male urinals - also easy to find, just be sure the lids snap shut without effort, some have bad lids. I do not know if your dad has any continency(sp?) problems, but my husband always sits on a pad, just incase something leaks.

    Gait belt - your feet apart, stick your butt out, you are putting both hands on either side of the buckle, fingers under the belt from the bottom up, and pointint to ceiling, and lifting with contracting your forearms (think of doing curls with a hand weight) - no back involved with your butt out properly. My husband usually sits in his wheelchair, as it is easier to get out of then reg furniture. His wheelchair does not have arms cut way back, but longer, so he doesn't have to reach behind him to raise up.

    LOOK OUT FOR THIS: Hubby wants to start to stand, then immediately bring his body up straight, which causes falling backward. They need to be trying to put their head all the way over your shoulder, till they are on their feet, and slowly rise then.

    I'm guessing you are referring to the little tables that go on wheelchair arms? You need to order that from the same company that did the wheelchair, because chairs have different arms and they need to be the table that fits the chair. I had a friend who had a stroke some years back, so was wise to what all was out there, and insisted on one. Hubbys is like a clear little table that slides onto his W.C. arm. They're all different. The insurance pays for the wheel chair cushions, really needed.

    I was going to the other house to do more work last night, after hubby went to bed, but kept falling down from exhaustion everytime I stood up, so couldn't go. Today we got an offer, so if it works out, no more going there to work!

    If you rent it with the furniture, less work to do, but it will probably get trashed. maybe since it sounds so big, you'll get people who take better care, and of course, you have the deposit. My husband was able to get lots of boxes from work that paper came in - white boxes with lids. Does your husband have any type situation like that, where they get lots of boxes and people can just take them? We did not rent because any money we made would come directly out of his company disability - they only make sure you make a certain amount, no more. So, if you got income from something else, the disability is lessened to keep you at that amount. In the same way, it was lessened by what we get from soc sec disability.

    The first thing you need to make sure is gone, is everything of value - jewelery, photos, electronics you are not renting out. Be sure to leave some lights on, empty houses attract theft. My house is about 30 minutes away, but being alone, that is 1 hour in drive time, and having to get back before he wakes from nap, or going at night and working the wee hour shift. I was last there Thursday, when I spent the day cutting trees out of the middle of bushes that had grown up thru them - stuck them in the back of my rendezvous and filled it up. Later, cut them up into 6-12" sections in black bags and put them out on garbage day. That was a brutal day. If you have anything you need to ask that is more of an intimate nature that you don't want to discuss publicly, you are welcome to write to me privately. You can ask anything, I know the answer because I'm doing it for a year now.

    Last edited by Sandy Caregiver; 05-31-2013 at 09:30 PM.

     
    Old 06-01-2013, 12:33 PM   #12
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    Re: New here... just think this is the group with the answers... not the doctors

    Okay, new problem. We have had to send back the wheelchair 3 times b/c they kept bringing the wrong size. Right now he is using the companion wheelchair which does not have removeable arms or adjustable legs. They finally brought the 16" one yesterday, but we found it b/c of the wheels, it won't fit through the doorways in my house. They suggested getting him a Jr chair which is for children..but I'm afraid he is too big for this. We will have to wait to ask the doctor what he thinks. It's just that without the removeable arms....it is so difficult to transfer him. Do I make the doorways in my house bigger? How much expense is that going to be? I guess I am just venting a bit now. In the meantime, my poor dad is still keeping his spirits up...I admire him so!

     
    Old 06-01-2013, 12:37 PM   #13
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    Re: New here... just think this is the group with the answers... not the doctors

    where is the measurement being taken at, so I can measure my chair and see what it is?

    PS - I just measured my chair from the most outside part of the wheels, side to side = @25".

    Frame to frame on my door is about 31.25" but the door is open and in the doorway, taking it down to just under 30"

    It also matters if you have a clear straight shot at the door, or are trying to make a sharp turn.

    I had trouble with not being able to lift a regular w.c. with the huge wheels - to heavy, to put in my car. They ordered a light weight one called a Breezy Ultra and I can get it into the car, by hitching up the front wheels and sitting it on the hatch back, then rolling the whole thing in from there. they took my hubby's measurements and built it for him. It doesn't have those leg rests, but he never missed them. I did make sure they ordered the cushion, arm rest/table and anti-tip thingys in the back (they can fall back to sit down and cause the chair to tip backward). It does have swing back arms, which I think are also removeable, but we don't really use that - thought it would be a big deal.

    I don't remember did you say your dad's size and weight?

    Breezy Ultra:
    http://www.medicaleshop.com/media/pdfs/sunrise-medical/breezy/brochure/ultra-4-brochure.pdf

    Last edited by Sandy Caregiver; 06-01-2013 at 01:05 PM.

     
    Old 06-01-2013, 01:54 PM   #14
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    Re: New here... just think this is the group with the answers... not the doctors

    Well, all the OT was considering when she ordered the wc was the seat...but the problem is the wheels make the chair much wider. The bathroom has a 20" opening...the home was built in 1972..so it is an older home. My husband and I were talking about possibly taking the doors off, that might help with another inch, but the chair we need is still too wide b/c of the wheels...there is no way to open the bathroom any wider...so I am at a loss now. I need to mull this over with my mom. I guess....not sure how to proceed. He might need a 2nd wheelchair just for the bathroom?

    Oh, he's about 5'6"-5'7" and about 170lbs.

    Last edited by daughter 01; 06-01-2013 at 01:56 PM.

     
    Old 06-01-2013, 02:11 PM   #15
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    Re: New here... just think this is the group with the answers... not the doctors

    20" door openings are non-standard, in any home. Our old home was around the same time period and our new home is around 1961. Could this bathroom be an addition that wasn't there originally, because even trailer doors are wider than 20"? There is a bathroom at our old house that has a smallish door, because it was built into another room, not there originally. I will measure it the next time I go. No wheel chair in the world is going to fit in there (are you SURE you measured right?) - I would have to turn sideways to walk in. If that is a true measurement, I would just have to use the bedside commode - and males must have a urinal to use at the same time, their privates are not going to fit down, and they will pee out. My hubby is 5'7" and weighs 167.

    Last edited by Sandy Caregiver; 06-01-2013 at 05:00 PM.

     
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