SandyCaregiver

Seems there must be cheaper places for him to stay that don't clean his room, rather than paying a fortune for no service. Some supervisor needs to know how long you were gone and how it was all still dirty when you got back. I'd me really mad too - they are being PAID to do these things, it's their job.

Fred, there are handle bars that are on either side of the toilet seat that help you rise. Someone gave me a riser, so I bought the handles separate. They are not firm, like you can easily lift them, I guess to sweep under them, but they bear up when you are sitting or getting up. Look for toilet support bars at the online walmart or amazon site.

Nancy you shouldn't feel guilty for giving Dan the opportunity to feel gratitude for something someone does for him. Being a tyrant is a hard place to live, you have set him free of the bad road he was going down, and allowed him to look up and see he DOES have things to be thankful for. Before, he was so bent on making others pay, no matter how hard you tried, that he didn't have the luxury to enjoy anything. Once one starts on a road of persecuting others and 'making them pay' it is no place for you, and no, not even them. They are trapped in their own angry misery. Dan is finally free of the position of power he had thought he wanted, and now can actually enjoy things again. I'm very happy to hear that. Both you and Dan are benefiting from this new freedom from the power struggle that was going on. I'm always glad to hear you are doing better. Little by little, girlfriend!

I would put Bob to blogging if he could type, and think what to write -but he has very limited computer skills. I do sometimes give him small things like write a paragraph about a subject, to keep pushing him to being able to express himself in writing. He could do more with one hand, if there weren't sequencing problems and some cognition loss. I was teaching him how to look at things on ebay today, and spent HOURS going back over to him to tell him again how to move the page, how to click on something, etc. He is picking up on it though. It is strange for him to have to struggle to do the smallest thing on a computer, when he used to write power point presentations and present them around the world! But, he is in a good spot where he is able to apply himself to slowly learning different skills again

PS - I think I would have punched her in the stomach and said, "no, it's behind you! I live with the aftermath everyday. I don't have the luxury of forgetting about it!

Bob had his 3rd year stroke surv anniversary in Feb/Mar (feb 29, only exist some years, so other yeas it's March 1 !) This year has brought some growth, and that's all good. He started wanting to do a hobby and we talked about cross stitch, since we had both bought kits yehttps://www.facebook.com/mainlycrochet?_rdr=pars ago, while on vacation. His were more like historical ones, while mine were like cutesy animal ones, ha, ha. The biggest problem with that is not being able to hold the hoop with one hand. I went to Hobby Lobby and looked at hoops... but the more I looked at them, and thought thru the process, the more I thought about the cross stitch process and saw things that would just keep coming up, as a problem. So, I began to study the problem of one hand, as I moved thru the store. I came up the 'sketching' supplies, and realized you only needed SOME vision and one hand, and he had enough cognition that he could follow the pics. I called him and told him, "I've found your new hobby! At first, you'll be surprised and maybe not want to try it, but I know you can do this - it only takes vision and one hand!" So he said he wouldn't refuse to try it, no matter what it was, and would wait to see it (I was keeping it a secret, so he wouldn't have time to turn on it before I got home with it!) He has never sketched or drawn before, so it was a totally new thing. Here is his beginning at sketching! (he was still working on the owl):

Oh, Donna, I'm so very sorry to hear this. I know how devastating this must be, and send my best prayers and hugs to you.

I do understand that sometimes we just need to step away. It may even be part of getting better, who knows. But we have these feelings that come up and we have to deal with them, however we can. I'm sorry you are in a bad spot now, but hope that it will get better, and you'll come back again. Until that should happen, we will remember you in our prayers, as I hope me & Bob are remembered in other's prayers. I know you're hurting, and I send hugs to you, you are important, and cared for.

Your beautiful message is a living tribute to her. I am glad to hear that she had a peaceful passage, and I know that a good part of that, was all the love you & your mom have surrounded her with. It's never easy to lose a loved one, I'm sorry for the pain you are all feeling.

Even with Bob's profound disabilities - physical, emotional, exhaustion, sequencing problems and some cognitive loss, he LOOKS really good, and people who know him are totally clueless when they see him out. There are soooooo many people riding scooters these days that it is more a convenience to them, that it no longers points to a big problem if you see someone on one. They undoubtedly think I'm in his way and need to lighten up, when in fact I am the one cuing him contantly and keeping him from getting into a bad spot. People never really get it - not even those with someone they know, unless they are the person that goes and helps them, they don't realize how much is going on. I was talking to a man in a car waiting place while our cars were being worked on. He mentioned some bike ride and I said how my husband used to do all those rides till his stroke and we went on and I told him about Bob's stroke and the things that he lost and he replied with, 'well, good luck with that, maybe he'll pop out of it'. I nearly fell off my chair! I think the word people hear is stroke, and the word they miss is SURVIVOR. I do try not to beat a dead horse with people who already know his problems, and not repeat the same stuff over and over, because they've already heard that part, more than once. On the other hand, it's kinda like a 2 edged sword, as soon as you quit talking about it, they ASSUME it's no longer a problem - then you end up having to set them straight! But any changes or improvements or things we figured out how to do - it's part of our life and they ain't heard it yet, so they are going to get an earful! His friends & family do want to hear anything new though, so I always pass it along, usually on facebook.

Nancy, flickering lights can set off seizures, you don't have to be staring at it. BUT, that doesn't mean that the reason behind why it caused one isn't a result of one of your meds. I'm guessing you are combing over all the side affects of your drugs right now, and if not, you should be. You will touch base with the doc who prescribed them on Monday, to see if he has an idea about meds interactions? There are meds that don't exactly cause them, but say not to take them if you are prone to seizures. So could it be you are PRONE to them, but didn't know it yet? Study those side effects! Out of the box question.... did you put any kind of flea meds on a pet yesterday... and perhaps get it on you? It's great news to hear about Dan doing so well! You are doing better, and HE is doing better, where he is. This is creating a better life for you, both, single-ly and together. You can now enjoy outings, as you feel up to it, with a Dan who is learning appreciation. That's all any of us can hope for Nancy. It's working, girlfriend!

I had shingles, and aside from the intense pain and tingling that made you want to scratch it (but would feel like a abcess if you tried to) the rest of my body was not affected in the least. I did later get the shot, and one for Bob too, hoping he would not have to ever have them. I will say that I used powdered turmeric and made a thick paste and put it on the shingles. It did give releaf, but you have to pretty much put it on exposed skin, as it is like mustart and will stain forever whatever it touches. I had shingles on my butt, so had to lay around with my butt exposed with the stuff on it. I also remember them feeling red hot, so I dropped the room temperature to colder and it helped the itching. Anyone who suspects you might have even one, go to the doctor now! The meds stop new ones, but the old ones have to go away on their own, so the more you have before you get the meds, the more you suffer! Hope you find out what the shivering is about soon.

hmmmmm.... sounds like it's Dad's turn to kick in and tell him what to do for YOU.

Your description reminds me so much of a similar problem for autistic people. I wonder if their meds would help others who inherited the symptoms by another path (stroke).

I am so glad to hear how much you've improved. I know you will continue to improve, each day you will feel a little stronger, clearer of thoughts, and brighter as your own personality begins to come out again. Is your sister here to stay.... or for awhile?

I am having trouble too, even with my reading glasses. I'm guessing you have written this in another program and pasted it here, and that is why the font is off. You should be able to open it by clicking on the edit on your post, then highlight all the words, then change the font to 14 (what mine is) then click button on the bottom 'save changes'.

>One of the things I told my self is dan needs to go to the nursing home, because in reality he is going to be better cared for... Now it is appearing that will not be the case... so my approach to not having him home -this is still true, Nancy. You can't do it. If you fall in the floor dead what kind of care will he get? Would he even be able to call for help? A failing person can not produce 'the best help'.... although... they can be the 'enforcer' (think of that as a title, like a super hero You're still watching out for Dan, Nancy. But now you're the forman, not the guy on the floor.

>So it seems the answer to peoples question hi how are you… makes me pause and the only answer i am able to give is surviving . And wishing I could just say the word "good".But something about this depression makes me so brutally honest… It has a term for it - called…. uninhibited reply…. essentially this means i have a lot of trouble replying or even commentary from me is honest. Honesty when inappropriate is brutal. mostly for me - in terms I wouldn't just say to you I hate your new haircut. But if you said to me i like your haircut - i would go on in conversation and (if I wasn't happy with the haircut) about why I don't care for it... -Nancy, this sounds so much like me. I believe it is the 'cinderella syndrome'. We are generous with others, but find a lot of fault with ourselves. I often will reply to 'how are you' with "still living, lots of people want to be me!" I remember being complimented (oh, you can do anything!) on a shirt I made once and I just stood there with my mouth hanging open. They were quick to jump in and apologize, thinking I'd taken it the wrong way and they didn't mean it bad. In a minute I found my tongue and assured them that I did understand correctly... it's just that no one had ever said anything like that to me. I wasn't used to getting compliments or anyone really caring how I was... and was taught that it was incredibly selfish to think about myself at all. Very confusing world, to believe everyone else is worth anything, but this other person, not. Mixed messages screw with your head. Even if you didn't grow up that way, you still received a big dose of that, as a caregiver always trying to do the best and maybe it would make a difference, putting yourself last. I'm so happy your sister is there. Finally some time for you to bond with someone and receive some nurturing to your spirit. Love you!

Nancy, I have one question that keeps bugging me. I know you said you are moving because one person doesn't need 5 bedrooms... but neither do 2 people. You bought a huge house for family visits, right? Won't that still be an issue? Of course, I realize finances may be a big factor here, just want to make sure you are thinking right about why you bought 5 bedrooms, and not just getting rid of them because of Dan - he wasn't the reason you got a big house. How will family visits work in a small home? Again, finances may be the reason that you need to, don't know. Most people don't host something that big anyway, just giving some feedback since I know you may not be thinking as clearly these days.

I was in terrible shape yesterday. Bad enough that I was afraid for how I was going to take care of him. All the prayers of friends must have worked, because I woke up so much improved that I did not need a walker today. I just am walking very carefully, and not in a hurry. I'm still sore here and there, but I can LIFT MY LEG - which was the part that was shutting me down, and causing me to need a walker, which was hard to use with a sore hand on one side. My knee is even bending a little! WOOT!

Sue, it is around my neck right now! I stopped wearing it when I had misplaced it and the battery went dead in the lost one. The system kept calling my phone NONSTOP to tell me it was dead. While cleaning a mountain of clean clothes off the dryer top, I found it, and got it out again. I just never got back to WEARING it, just placing the 2 around in spots. I had wrapped this neck loop around my bed rail incase something happened at night, and the clip on here or there, depending where I was - but really not probably going to work from the floor. So, I'm back with them again. I hope I don't get sloppy again... wait, let me try again, I am NOT going to get sloppy again.

I was unbelievably sore today. I couldn't walk at first, because I couldn't pick up my leg at all for hip and knee pain. It was very swollen, luckily I took a diurectic last night, to try to keep it from turning into elephant leg. After a couple of hours of struggling to move at all with a walker, something eased up. I was able to walk more easily by just sliding my foot on the floor and not picking my leg up. I still faced the problem of how do you bring food/drink back & forth with both hands struggling to grasp the walker and just move. I had a banana nut bread loaf in the fridge from a trip out last week, so put it in a bag, with 2 small plates, and forks. I was able to hold it around my wrist while working my way across the floor. For lunch we ate 2 drinks that are like ones they give you when you can't eat - but a whole meal. So with that down the hatch, I determined I'd call Bob's friend Fred. He's always saying if we need anything just ask. I don't really ever do that, so he must have thought you know where had frozen over when I called and asked him to bring us dinner. So we had to big Fiesta Beef Taco Salads (tacobell). I don't know how tomorrow will be, but have a pretty good idea I'm going to have to cancel our Thursday appt (carotid test results), but will see how I do tomorrow.

Nancy, you would never have had the good day with Dan yesterday, if you had not put him in there. He was convinced that the stroke made it ok for him to say and do anything he felt like. Now we see he IS capable of acting so much better. I know you love him, and always will, but this is your best shot of getting quality days with Dan - when he is on his best behavior, because he sees you can't handle his antics anymore. You did the right thing Nancy, and you got yesterday as a reward for that. Love you and know in my heart that it is better for Dan also.

1. Just this weekend we both had stomach virus. I'll spare the details on that one. 2. I know better than to put plastic bags of cans or jars on a chair, because they will always roll off. But last night I stopped and put them on a rocking chair, so I could hurry to give Bob some meds I brought home. When I went to get the bag a 2bl 8oz jar of peanut butter hit my foot, right where the big toe attaches to the foot. I thought for sure it was broken. I knew better to not put the stuff on that chair, but I wasn't careful enough. 3. Now, I was just putting out the garbage...and wondering why it seemed so much darker than usual when I do it. Later I figured out it was because I brought a bag of paper garbage out the front, and I usually open the garage door and take out the garbage. That lets a lot of light onto the drive. When I got to the end of the driveway, I stepped on an uneven part and twisted my ankle and then felt my knee twist, then my back twist as I fell. I wondered if anyone heard me scream when I fell and might come out... nope. I lay on the road for about 15 minutes, waiting for the shock of the pain to stop, and hoping nothing was broken. I saw the lightening and wondered if it would rain on me. I kept hoping a neighbor would drive down the street, but no one was coming, and my darn "I've fallen and can't get up button" was by my computer. (lesson learned) Then I tried to set up somewhat and tried scooting on my butt to the cars, to use them to get up, but it started hurting my back when I pushed up to scoot. I got to the dip in the drive and thought I might be able to roll over into the grass on my knees. After much struggle, I clawed my way up, and made it inside. So thankful I was able to get up and nothing's broken. Knee is not feeling right - it's the one I had surgery on before for torn this and that. But, will keep a good thought. I know this is all my fault. I should have did it earlier, and not kept going when I saw how dark it was. I'd have thought of the garage light if I'd given it a while to sink in. I should have had my button on, I did pay for it, but it's useless if I can't get it. I know it sounds strange, but I'm overwhelmed with thankfulness that I am basically OK and was able to get in and back to Bob. I'm always so scared if something happens to me, what will happen to him... thank God, we didn't have to find out. Please pray for me, I seem to keep doing stupid stuff lately... my confidence is shaken