SandyCaregiver

My husband had his 4th year stroke anniversary this year, so we are working toward year 5. This year he is doing something a little different. He can only do a few steps, but here and there, he is moving on his own. He has enough confidence in his slow steps that he is not afraid of walking a very short distance without asking me to spot him.... not every time, but as the mood hits and he feels stable enough to do it on his own. I believe he would do more if he would exercise the tiniest bit on his own. But he has no push to self start, none at all. Even so, he is doing a little more for himself. He was on the screened in porch Tuesday, when I went to Walmart, and when I got home, he said I had left the dog out, and he got up from his chair and let her back in. It was only a few steps away, but he had to get up by himself, take those few steps and then step back to his chair and sit down by himself. So this is new things he is doing after all this time.

I agree so much Asha. From my caregiver point of view, and it does matter the attitude of the stroker, but here I count everyday a blessing. If he were mean to me, or one who couldn't see now or the future for the past, I couldn't say the same thing. But I think he's even a better person than before the stroke - and he was good before. He understands more things now, that escaped him before. I hope to have many happy years left, and do not wish to be free of it at all! I just want to be with Bob

You've done well in all this time that you've survived your stroke. You should feel proud of all your accomplishments or working in your scooter and taking care of yourself at home while your wife worked. It does get harder as time goes by, but for everyone. Yea, saw that Fred. You don't have to have a stroke to change your whole life, someone can just shoot you

Sue, we have 2 cats and a dog left, and I feel like I just don't want to do any more clean up of vomits, pees and poops. They are the last. I would like to get to see our new furniture we bought for this house, instead of the cat hair covered blankets that hide them. I can't be certain of my life if I were a widow, but I know I'm tired of 'the clean-up' duty, and having to shovel a spot in the snow for the dog to go. I am really enjoying crafts and it's what I do to keep my mind sharp. I can get totally wrapped up in what I'm making and lose hours of time, in which I would have been bored (or working - can't work all the tiem, need respite). I'm trying to learn things I always wanted to learn, but haven't yet.

That's surprising that it is just now being used. It has been polite protocal to not expose everyone's email on any mailing list, because you only need one stinker to sell everyone's email or start hassling others. Gosh, for 20 years, at least, I've known about blind copy. I can't believe the hospital is just learning this! If you open an email to someone, most mail programs will have the top line: TO second line: Cc - carbon copy and other email addresses -I use when I want to send picture to both son and daughter inlaw. third line: Bcc - blind carbon copy - each person will only see their own email address. Always used with a group of people, as it's not our place to pass other's info around, nor hand out their phone numbers, nor addresses. Somehow, in the past, someone I casually knew, put me on her SEND list somehow, and soI got everything she sent out, as well as everyone else on the list. Well, there were a couple of people on her list that my address got on their send list. And I got all their crap mail that I didn't even know these people. What a mess.

One of the things to learn on my bucket list is bobbin lace. I just began to practice the stitches for the first time today - baby steps and a long way to go! Now here's the good part. After I'd been practicing awhile, Bob asked how was my Bo-diddly coming along? Me: huh? wha... oooh, you mean bobbin lace?

Well, I had a tough time deciding whether to put this under my hobbies I do for me, or on the regular Bob blog! Bob has no right hand/arm usage, but a good working left hand, and he's left handed The thing is, he can leave the stroke hand in his sweatshirt sleeve or under his lap cover, but he likes to USE his good hand, and so when he's on the porch in marginal weather, his hand gets cold! Putting a glove on the good hand, would kinda render it useless for picking up his army men or legos that he likes to build scenes with..... so.... keeping it warm without taking it out of service was the goal. So these are called fingerless mitts - no fingers, no finger holes, just a thumb slot. By laying it on his leg he can just snake his hand in and out HIMSELF, as he needs it, all fingers still working. I also put a trinket on the front so he can immediately see which is the front, without looking for the thumbhole. Knit Pattern: http://web.archive.org/web/20100612011913/http://ohmystars.net/craft/knitting/knitgloves.html

Hoping your new home is a real blessing in every way! Yea, that moving is a BEAR, glad you are past trying to get out of the old one, and making the new one yours

Oh wow.... it sounds really a lot. I can't even absorb it all at once. You certainly have all my prayers / energies / whatever you want coming your way! I hope all this will make an incredible difference for you!

Wow, 7 years! I didn't know you were that much ahead of us! Bob just had his 4th year anniversary Feb 29 (leap day) - to which Bob told me it was only his first year anniversary really Tell Bruce WOOT! LOOKING GOOD BRUCE!

I know we have different trees all around us, and some are in full leaf now, while others still look barren. But I'm guessing you know whether your tree should be leafed out of not, so you may have actually lost your tree. There are several large blue spruces on our street, and they all look like fluffy full wonders... all but mine, that looks like an old cut Christmas tree with half the needles off. I don't get it either Fred. We loved that tree when we bought the house in 2010.

That is fabulous! You must be elated at this wonderful accomplishment! Congrats on challenging yourself to make this new dish, and all the things it takes to bring a meal to dinner table!

I've been thinking about writing about this, and it has recently come up again. So, I almost thought not to write, as it might be redundant... but no, I need to blog it for my own record. When Bob first stroked, I called my girlfriend, since 2nd grade. I told her what had happened, relaying my horror and loss of what our lives would have been. She matter of factly said, "eh, people don't realize being handicapped is not about living with loss, it's just living differently". If anyone else had said that, I'd have decked them... but since she had handicapped parents, I listened. So... as you shakily crawl out of the abyss, looking for a shred of hope to hang on to, you begin to hear the buzz words.... new normal. So what is normal? Is it being perfect? Or is it a word that means what we are used to? I think it is the 2nd one. We are used to doing it this way, and that way, and now we can't do it like that. Are we abnormal, then? I don't think so, I think we are learners, seeking what we once sought, to establish how we do this, -just like we established it before, in the beginning of our lives.... our learning lives. I used to think it meant, 'my new normal is taking Bob to therapy everyday and doing everything myself'. That wasn't it....not the new normal... it was just the path way to it. As most caregivers know who have profoundly handicapped strokers, you spend the first year on pins and needles, watching their critical state of health. Then it gets a weeeee bit easier for the next few years. And then one day, your husband tells you he knows things are better, because he heard you singing in the kitchen again. You begin to realize that it is better, and you don't HAVE to spend every minute now, doing all those millions of things like when it was all critical, but can now slow down and spend some time on yourself. While you always need to be on the look out for how to do things better in the maneuvering and transporting of your stroker, you've gotten a lot of that figured out now. You do certain home therapies, just like any one else exercises at home, to stay 'in shape'. One day I looked at Bob and I realized I didn't see the wheelchair, I just see Bob. I told him, I don't feel like we are a handicapped/caregiver couple anymore..... I just feel like we are 2 retired people sitting around and taking it easy. We stay up all night, laughing at our favorite shows, sleep late, take naps whenever we want.... then it just hit me about a week ago... this is IT! THIS is our new normal! This is the way we live without thinking about it and worrying about it! It is no longer 'how will we do this', but 'this is how we do this'! We have lived this life for enough time that we have established our normal.... no longer our new normal... just normal now. Don't fear the words "new normal" - it's code for :"second chance"!!!

For you:

I never pictured myself, at 63, standing on a ladder and cleaning leaves out of gutters..... or plunging toilets, or spraying and painting the deck, or weed eating all around the yard.... Hey! Plant your feet on the ground and feel your dominance over all these things. You are SUPER WOMAN! Now for the sheer will power side of this discussion. When my 87 year old mother asked me how I was able to do it all. I said, EPHESIANS 6:13-14 (simply said) When you've done all you can do to stand, then stand. When I'm too tired to stand... I stand. When I can't stand anymore.... I still stand. When those few moments have happened, that I couldn't stand, and against my will, went down like a brick, I thought to myself, I may be fallen down on the outside, but on the inside, I'm stilll standing.......and I wait.... My mom asked, 'what did you wait for'. I answered, "to stand".

Yvonne, Bob started out reading extremely simple things, and on the ipod where the "pages" were news column width. (visual cut) He does not read like he used to, but he CAN read, and it's worth a million dollars. Somewhere I posted pictures of the books Bob read that I got at Walmart in the magazine dept, with Batman or Superman, a couple different ones. He actually started with my very old personal books "Look, look, Jane! See Spot run!" That only makes sense if you are in the right generation ha, ha! Strokewife, I spent my LIFE online, reading, searching, writing, learning to deal with every aspect possible. It will consume you, till you finally seem like you've been every where on line, read everything, and already know the answers. Then a new feeling of confidence as an experienced caregiver, overtakes the fear that is dumped on us, in the beginning. You stop running scared and uncertain about everything... and the light goes on... you have your new normal. Takes a while. If you are interested, you can check out my projects page on ravelry, as I keep reconrd of all my needle crafts there. When you click on this link, you'll see a page full of pics - don't bother it's too long to load. The same pics are easier to see if you look at the groups separately, by clicking on one of my tabs at the top. If you look at 2012, you can see how very little I did the year he had a stroke in Feb 29, 2012, and in 2013 & 2014. BUT, check out 2015, our new normal became reality, and I re-appeared as a separate entity! You WILL do those things again! http://www.ravelry.com/projects/cozyhomelife

Don't fear the words "new normal" - it's code for :"second chance"!!!

Carol, I think when someone has something happen to change their 'path', no matter what, they would have to be crazy to not want to be like they used to be. It took us 8 years to finally have a child, and when he was 9 years old (1987), I became very ill and stayed that way until around 2008, when I had a miraculous improvement in my health. I missed nearly everything. (Please people, don't try to make me feel like I didn't, it's an insult to my intelligence, and only makes me mad) Anyway, point is, I could be really mad about it, but on the other hand, many parents simply die or are killed and miss 100% of the rest of their kids life forever, they don't come back. Several of young son's friends lost parents... forever. So, you may be wondering how this ties in... it's in keeping a larger view. Of not putting a magnifying glass on what you CAN'T do, but opening out the lens, like I see you are doing (crocuses, lake, etc). What do you have left that the dead people have lost forever. Bob is profoundly handicapped. Lost 60% of his vision, right arm & leg, all bathroom controls, aphasia, sequencing problems, can't work the remote control we've had for 20 years, can't get out of bed or in by himself. I change him, dress him, shower & shampoo him. He can't GET one thing for himself, not a glass of water. But he can eat the food I cut and place in front of him... I just have to cue him to drink, so he doesn't throw up in his plate again, from all food and no fluid going down. OK! So what's the point of all this? Everyday I thank God for my husband, and if my health hadn't improved 2 years before his stroke, I wouldn't be able to be his 24/7 sole caregiver, as I couldn't get out of bed before. This man used to travel extensively around the world to teach 6 Sigma and Lean Manufacturing. When he flew into a country, people from other countries would fly in, just to hear him. He's biked and ran marathons, he's done zip lines and climbed the famous bridge in Australia, with a sprained ankle from hiking the day before. (he always did stuff like that on the week end when he was traveling somewhere) Well the biking and marathons were at home - he would go on pedal bike rides and pedal 60-100 miles a day). So what's the point of all this? He did all this, and now TO MANY he is one step up from a vegetable. Not to us. Everyday, we realize there are 1000s of people who would gladly trade places with him, if only THEY could hear and see their loved ones, the blue sky, the bird song, taste the lasagna. We laugh everyday, we don't need to look at what we can't do, we already know it, we look at what we can do, and are truly thankful for every little thing, each thing meaning so much more than people grasp. Our neighbor who had a minor stroke, went suicidal, because he couldn't get his fingers to make the right chord on his guitar. His explanation was, 'you don't understand, that's who I am, that's what I do!' No... neighbor, YOU don't understand, Bob used to be the guy who traveled around the world, people flew in just to hear him talk. Bob used to be the big hiker and biker and marathoner. Let's get real now. Bob used to take his own shower, use the toilet, wipe himself, get a drink of water, be able to see so he didn't hit door jams and be a fall risk. Walk without a gait belt and me dog every step like his shadow. (I'm so thankful he can now walk the short distance from room to room, saves so much effort.) For those who came here and expressed pity to him, we go sick of it and decided we wouldn't put up with it. I now tell them, "my husband has been to places and seen things and done things, you never will. Don't feel sorry for him, feel sorry for yourself! and we both smile to show we mean it! The human spirit WILL triumph, if one doesn't define themselves by what they CAN'T do. I'm glad to see you are taking the high road on that. Do we wish he hadn't had a stroke? Heck yea! But what else might have happened? What about the people who had not stroked, -children up and out, bought new house and motorcycle, ready to live life large.... and both hubby and wife killed on that motorcycle? Their daughter dated the son of friends of ours. What about the couple who were both killed on vacation, watching the sun set?(neighbors of ours, parents to son's friend) We don't actually know that we'd both be alive if he HADN'T stroked, is the irony here! For all we know, it's the only reason we are still here. Hey, as I said, we laugh everyday. The things he did, we are so proud of them, of everything he did and they are wonderful memories and accomplishments that no one can take away... unless we LET them with their pity. We don't pity ourselves and we don't let them do it - and we live a happy life of 'the glass is half full'. Look forward, you are not done yet! I was going to write a small blog on 'the new normal' but saw your entry and thought I wouldn't. But now I think I'll go ahead and do it, for my own record. Later though, have to get hubby up and dressed, our new day is starting!

Oh no, you poor thing! I'm glad to hear you are giving yourself the 'go to bed and take it easy' treatment. Hope your meds kick in soon!

oh that is just my walmart receipts that have the diapers, bed pads, guards, wipes that are in an envelope. But I lost them AGAIN, and only seem to have from Aug on! For everything else, I have a shelf... actually a stack of shelves and the top one is always the current year, and the folder in it says "2015 - paid in 2016". I have a separate folder for doc/rx/test and insurance on them and any handicapped device I bought at walmart or amazon, and then a folder that has things like real estate tax & mortgage interest, then one that is just me, pretty empty (good, keep that way). I try to put them on a separate receipt from other purchases, and on a different card. I buy a LOT at one time, so there won't be hundreds of receipts, as I don't have to buy them as often. The first year I had a kleenex box with the top cut off and as I bought, I'd file them in there, standing up on their side, and it filled the box - but that year, I was buying them in with the groceries, so I had lots of receipts with an item or 2 on them - made a much bigger mess to handle.

That is great news! How often do you need to redo this procedure and what is it they do exaclty?

Achandra, when I was looking for a hobby for Bob I went to Hobby Lobby and went thru every aisle, picturing the steps needed to do that hobby. Finally, I got to the sketching aisle and AH HA! Bob can sketch with one hand. So that's what I got for him. On a similar note, the adult coloring books are the rage now! You see them on tv, but you can get them in the magazine rack at most stores now - use crayons, pencils, markers! I remember when my son was young, me and a friend who also had kids, would get together and end up getting the kids coloring books that were right beside us on the table and start coloring over the pages they had made such a mess of scribbles on, and we thought it was soothing to do - guess we were ahead of our time! If I didn't already have so many hobbies, I'd probably try it too!

Your blogging reminds me so much of my own, after hubby's stroke. I guess it kinda slowed down a lot in the last year, when our 'new normal' became just plain normal! Someday you might be looking for something new to read, and my back blog might be worth it to you (or some new caregiver). This is one of my post from the first year, where I had a water shed moment, and full realization of just how important we are to happiness, not just getting the job done: http://www.strokeboard.net/index.php?app=blog&module=display&section=blog&blogid=721&showentry=11362

I know that the stroke people can not really get into any of the crafts I talk about, but I'm hoping that it will give some ideas to caregivers who find themselves at home more, and may need something of their own to do. So Aug 2015, I begun to have some time to actually DO something and began to crochet again, and think about all my crafts I hadn't really had time for since Feb 2012. Then this Dec 2015, I decided to get into tatting. Since I had to learn it from scratch, it was something that took all of my attention. It had been a long time since I had time to lose myself in an interest (that was not cleaning of some kind!) I haven't read much lately, I had a spurt of reading on my kindle, and got lots of free books - there is also a free kindle ap from amazon, if you don't have a kindle, so you can still read books for free (or buy others). I get a list from bookgorilla.com of types of books I'm interested in and many are free, others discounted. When I first started reading, I only had time for a few sentences at a time, but eventually learned I could read (or crochet/tat/knit/whatever) after he went to bed, so got into it more. This seems obvious, but in the beginning I was too tired to not crash every time he did. Not now, I have time because I'm not as tired, unless something obvious, like weed-eating all day, ha, ha. Here's a sample of something I tatted recently:

Hi all, haven't reported in since October, so thought I'd let you all know we are doing fine, incase you were wondering! We did not get sick this winter - WOOT! The weather has been so mild that Bob (who gets cold easily) has had quite a few screened in porch days already! It is tax season, so I'm busting my head into the wall trying to find what happened to my hadicapped receipts for Jan-Aug - why do I always lose them? I know that I start putting them in an envelope right off in Jan, but by the middle of the year, that envelope always seems to get away! For newbies who may not know it, any supplies like diapers, guards(incontinency), bed pads, wipes, foot-up devices, hand braces, etc = medical deductions. I have that to work on and also Bob is turning 65 in May, so he has the open enrollment to switch from Medicare Advantage Plan to a Medicare plan with supplement.... so trying to figure out who to buy that from. Bob is doing well and can talk somewhat better, but still trouble when he wants to say a specific thing, compared to just banter. He has always been agree-able to do any exercise that I say, "ok, we need to do this now" -he's ready. BUT..... I wish it was in his ability to just do these things on his own, but it is not. I am lucky he is so co-operative when I lead him it.... but sometimes, we have to tend to other things... and then they don't do anything, without someone else to lead them in it. Will make a blog on what I'm doing for ME under my other blog, which I hope brings some ideas to other caregivers on keeping their own brains from going to pot. This isn't much of a blog today, guess I just wanted to wave and say we are ok!