SandyCaregiver

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!

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.

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.

I really really like this: I lost everything as a result of my stroke. Every Thing in my life. Then. But not my future,as far as I am allowed to go.

I'm glad you got to the bottom of that, strept is serious! Bob's urine changes all thru out the day, sometimes cloudy, sometimes really dark and just when I think I need to call the doctor, the next time he goes it's almost the color of water! I believe his colors are due to how much he's drank or not drank yet. I try to keep him hydrates, but as you all probably know, getting a stroke surv. to drink water is difficult. We've not had any problems for a long time, fortunately. He is turning 65 in May and we are moving from his Medicare Advantage plan to medicare + supplement F + rx = no restricted list of doctors or hospitals or locations.

Congratulations! I know how good you feel, and proud! Bob had sooooo many things that fought with his ability to read, and finally did get to where he could read, slowly. He has to pick his subject, that he is really interested in and knows the terminology for, like sports, or history. And the words can't be TOO snooty. His level of reading is not adult, but we are thrilled with his progress, another open door for him! Keep reading

Hi Nancy, long time no pow wow! You can only help someone as much as they will respond and co-operate, and you did it without all that, for 5 years. I only wish you the best. I'm glad the job is staying as is, I think there have been too many changes already, and changes, even good ones, translate to the body as stress.

Hi Stroke Wife, the day has special meaning here. Bob actually stroked on Feb 29, 2012! I understand everything you are saying. The first year after his stroke I was constantly looking for that elusive 5 seconds, just to wash my face! I'm 24/7 sole caregiver to Bob, who is profoundly handicapped. I am so thankful that he is alive, as that day could have played out in 5 different ways, and 4 of them would have left him dead, and one of those 4 would have had me gone too. Perhaps it's because I'm a bit of a loner, and always loved being home, that I don't feel trapped nor go stir crazy. I enjoy being home and spending my time with him, and there's no place I'd rather be, than with him. I cherish each day, and we work in a laugh here and there, and stay up late, sleep till noon, and do whatever we feel like. We consider ourselves RETIRED! This is the 4th year, and this summer I finally got to the point where I'm crocheting again!... or knitting or a little quilting or tunisian crochet, or rug hooking - I've even picked up tatting! I've never been a person to be bored at home, and when others ask me don't I need to just get away, I sincerely tell them, "I just want to be with Bob", they seem disappointed and shake their heads and go home! Jeepers... makes you wonder about THEIR marriages! I will say that it makes a lot of difference about the attitude of the one who stroked. If they are bitter and take it out on the caregiver/others, there will be no joy for anyone and it will just get harder and harder. I thank God that my husband is so sweet and patient and not a complainer! We are 'the glass is half FULL' people, and that makes it work. It is the real secret to being happy for anyone, under any circumstance! I could not do this, if he was a bad actor.

When people can not go home on their own, they can go into a nursing home to recover. A stroke friend did that with a broken leg and my mom did it when she had a pacemaker put in. The doctor has to do it, and make sure it is authorized by the insurance. It has to be a case where you are a real admitted patient (not in for observasion) for the insurance to work.

What wonderful news! I'm so happy to hear you have already had an early Christmas present!

I'm sorry to hear you are doing poorly Fred. Getting older is hard enough, without getting older with a stroke. I am still having bad limping and loss of abilities to accomplish much, since July. We both got the flu shot and felt kinda yucky for the last 2 weeks, but have finally come thru it. I can only say that I am glad we won't catch the full blown version of that flu, because the preview was plenty. As you know, eat healthy foods, do what theraputic strenghtening exercises/stretches you can, and you will be doing the best you can. Bob is plenty willing to exercise, but only if I'm leading him in it. His stroke leaves him with no initiative of his own, but at least he is a willing follower.

Wait a minute. She said it was so cold in the WINTER. That only proves your point. If no air conditioning can get in the summer from the stuck vent, then that means that no heat could come thru the vent in the winter either. I think the problem is solved for both seasons now.

So true Nancy. Caregiving depends on 2 things: 1. if you can 2. they would be happy We all know the caregiver has to be able to do it. But the other half of the equation is how the survivor chooses to re-act to his situation and interact with the caregier. If they take it out on the caregiver, they are limiting how long the situation can go on. They are cutting their nose off to spite their own face.

Sue, that horror was followed by him approaching the garage, which has a space just big enough for me to drive it in and hop off, climbing over it. I can't believe Fred thought that was a possibility - never assume others 'get it' always make sure of every move! I was screaming NO, NO, NO, STOP STOP STOP!!! and Fred saw the error or it all and motioned him to the side yard. I still can't believe nothing horrible happened, but I learned a lot about my role in letting others help me, no part not explained and covered how it will play out!

It's been awhile since I've blogged. I had a bad problem with my hip, in the front where it hooks on to your body, on the side excrutiating painful and low disk, sending sciatica down my leg. So, it's been a lot of me dragging my leg like the mummy and screaming here and there when I drug it wrong. I found some meds that helped, and some days I do better, other days revert back to screaming and dragging... BUT, here's the latest good news! I will say that when I bought my snapper rider the year after his stroke, I chose it because it had a wheel, and I wondered if one day he could do it. There is another zero turn kind that has 2 handles, takes 2 hands to turn, but if you only turn one direction... could work - don't know enough about them really. We had talked about whether Bob would be able to drive the ride on mower AT ALL, and finally yesterday, while a friend was here, I left the last few streaks in the middle of the yard and me & Fred worked to get Bob on the mower. We both ran on both sides to spot him. It went really well, most of it. There was that frantic moment when Fred motioned Bob to drive the thing between the cars and into the garage when I thought my head would explode. I guess this shows that I did not plan well enough to explain to Fred before we started, how it would end, so he had no idea how the end would conclude. So, that makes it my fault. He really has no idea how incredible it was that he didn't tear off the side of my suv, since he's blind on that side. So, I've learned something and will pass it on PAY ATTENTION! If you get help with something, make sure they know exactly what the plan is to do, and how it will finish, so they don't improvise, unexpectedly! I don't have to tell anyone here how excellerated Bob felt from his short ride on the mower doing man-work! He knows that he will never turn to the right, his blind side, and he knows he will never mow graded areas, but stick to flat. But the prospect of doing this is making him very happy. There will be many practices of how to get on and off with the most care and safety, and practicing with the brake and of course, only in speed 1, but I can see him being able to do some of the mowing

You are so right, Nancy. As you recover, you can see how his particular demands were too much for anyone. It is a DURN hard job, even with a n easygoing sweetheart!

such cute babies!

Wow! I am so impressed with his success! Tell Bruce we are all rooting for him!

Wonderful news Nancy! You are both improving from this move.

Nancy, you are trapped in thinking that everything that is not yes, is a guilty subject. This: he does his best to "guilt me." the look of disappointment when I say it is time for me to get going. - should not qualify as a guilt trip. Anyone that visits or that you visit will have a response when you leave, there are generally 2 choices: 1. aw! so soon! I'm going to miss you! ~or~ 2. get the h--l out and don't ever come back! You want number 1. You always leave someone wanting more, or there's no need to go back. You are getting the correct response - congratulations, enjoy this success.

>I let a severely brain injured man - control everything -Nancy, being able to see this(above) is what made this(below) possible - something that never happened at home: He lights up when i walk into his room

I like your descriptions of how you see yourself getting a foothold to try to get out of the pit... or at least a comfortable cave in the pit. It's good to see yourself scaling the wall UP. You are doing well Nancy, and you and Dan will both see the reward from it and get 'more' from your lives because of it. I'm glad to hear Dan is getting over the infection. Keep going Nancy, we're pulling for you!

You sound like the wisest one there.... you and your room mate are!

Kelly, from reading your description of his problems, is it correct that he has not physical problems, just thinking issues?

Oh my Mitch, I'm glad you are well enough to be able to react when there was an emergency. That's one thing I know is a problem here. If I go down, I might as well be alone But I do have a button that if I was not unconscious, I could push. I know we all have things we can't do, physical limitations - even me, who has not had a stroke. But every little thing we CAN do, is such a blessing to be able to do that. You did good!