SandyCaregiver

I know you are devastated to have lost out on what looked like it was the thing for you. The only way I can get over that kind of thing is to imagine that there was a problem with it that I wouldn't find out till I was stuck. Then I manage to feel better, knowing I 'escaped' it. Hope you find something better and cheaper and it makes this disappointment fade away into the sunset. (((HUGS)))

Yea, I read a lot about singing therapy for aphasia, watch this video:

Fred, you give me hope that my Bob will be able to do something for himself some day. Just to be able to get yourself a drink of water, change the tv channel without ending up on some weird thing would mean so much. You've been on this trail much longer than Bob though (Feb 29), so the future will hold our answers. Today, I'm thankful to still have my husband, and that's going to get me thru.

It sounds like John got you to where you are today. It's an honor when we leave this earth with something so powerful behind us, that it changed lives. You make him very proud, with all you describe being able to accomplish thru the day - that is a lot of pets! (My 3 are wearing me out!)

He was lucky that he didn't have the stroke on his dominant side!

He does his English Immersion software on the computer, and I've worked with him a little to type on the computer, but he really hates it because he can only use one hand and see half the keyboard! Still, try to do a little of everything. I never thought about how the handwriting might go, so I guess that's one thing he has going for him.

This came up in another post, and originally I put it there, but figure it might not get seen there after people already looked at that post, so am transferring it here. It concerns journaling and his aphasia. I wish he could journal. I have him write a little each day, but even he doesn't know what it means when he gets done. He knows while he is writing, I think, but when he gets done and looks at it, he says this is all jibberish. There are litterally, not 2 words together that make sense. I told him that what mattered was that he knew what he was writing while doing it, and his brain was actually doing more than one thing: thinking, writing, seeing, and it took time to organize it all and get it in order. Only practice could do that. Here is an example of his writings:

I think you are so close to a really full recovery.

I believe he will help others when he gets past this himself, too. There is a support group here, but it doesn't meet in the summer. Hope to get there this fall with him, so maybe he can see others like himself, and begin to feel 'normal' and look forward to being some help to others. I have transferred something I put here about it, to a new post, so people wouldn't miss it.

When I first noticed he was thinking more, I was really happy because I associated it with him improving. I never thought about him starting to think about the place he finds himself in now, wondering if people saw him as the Bob they knew, or some 'old guy'. Seeing him realizing these things is actually harder than realizing them myself. My empathy instincts are too darn good, I suffer my own feelings, and his twice as hard. I'm sure you all know exactly what I mean, and have done the same. I remember after his stroke when my son was home and we were trying to move things from the other house to our storage locker. When I saw all his bike riding helmets and water bottles, I cried unconsolably, because I knew he was changed forever, and what that loss would mean to him. Now I see him knowing that, and the wound is opened in my heart again.

Today when I got Bob up, sitting on the side of the bed, he said, "I'm Bob". I looked at him, and he said it again. He kept saying, "I'm Bob, I'm Bob, I'm Bob", maybe 20 times. I told him I knew he was Bob, and looked at him to see what that would bring. He said, "But am I the same Bob... or another Bob?" When someone is here and I say something funny, do they laugh because it was funny, or because I said something they couldn't understand? Do they see me as the Bob from before, or some other Bob? I said, no, you did really well while your friends were here, and they enjoyed seeing you doing better. They understood you too. He still wondered which Bob he was. I'm sure this has a relationship to us going to his office today to start tearing down his things to bring home. I can only speak for myself, and what I believe he is feeling... a surreal disbelief that he is no longer that world traveler that people flew into various countries to hear him speak, that he no longer is that healthy person that did exercises and sports, that he no longer has the freedom to be the Bob he was... so is he still Bob? Naturally, I do try to tell him he is the same Bob, who everyday, gets a little closer to doing the things he likes to do, and step by step, we'll keep working hard on it, together. But he was so much happier when he was exhausted from therapies and didn't have the ability to stay awake & think. Now that he is doing a little better, he is more wakeful, and he is thinking. I think he's been believing all along, that he'd be that shining example that makes it back and everyone is amazed, and he finally realizes, he's not going to be. The realization is painful, and shatters his ability to continue to be the person he knows himself as. Somehow, we will find a new normal. Somehow, he will smile again, and know he really is Bob.

You are suffering from more than one thing right now. The obvious is the painful loss of your beloved mother. The other is somewhat similar to the empty nest syndrome - hands that once worked with love and now are empty with nothing to do. The things they did all day before, are no longer needed. It will be hard to find a new normal for your days now. But realizing that the loss of her and the loss of how to spend your day are 2 things, may give a help in figuring out what to do about at least the 'do' part. Maybe, after awhile, when you are ready, you will be able to think of what your mother would like to see you enjoying/doing, and it will give you the ability to try to do it. The suffering part is something that will take longer, and never quite go away. ((((HUGS))) I say this as an effort to help, while at the same time, if I lost my husband, I'd be consoless. I understand all your grief, and know it is heavy.

Cat, OT works with the arm, not the leg. They also work with teaching how to dress, groom oneself. So, you have to ask them does the PT work on the arm, because if you say OT, they will think you mean something else.

Cat, they never approve a stroke before 3 months have passed, and it's either 5 or 6 months before anybody is eligible to get the first payment. I'm really lucky the therapists said something to us about it. I can't remember what you told me about if Mike had any short term or long term disability. I know those who don't really need that soc sec faster. For us, it won't change how much we get, just where it comes from. But they will dock your amount for how much soc sec will pay if you don't apply, so you would lose money if you didn't get it done.

I think one thing that was very helpful, is his last doctors appt, I took in a print out of things about his condition, his abilities and problems for the doctor. After reading it, he looked at me and said, 'sooooo.. he's pretty much completely dependant'.

Sue, so sorry for what you are both going thru. I manage to tough out my own feelings, but when Bob shows some weakness or fraility, it goes straight thru me and hurts like nothing else can. I hope things are better soon. Our generation sure does seem to have trouble on every front. Hold tight.

I agree, being happy IS a decision. You can see this everyday in people who have everything, yet are miserable, and those who have very little and somehow are joyful. Sure, we all get sad at times, but I mean a lifestyle. The routine is the only thing that has gotten us this far, without it, we'd be like a kleenex in the wind!

Oh man, I was at Walmart, and the speaker started playing that country song, something like 'you're still the one I run to, the only one I belong to, you're still the one I long to kiss' - and I started bawling like a baby and had to run to the back wall, so no one would see me.. fortunately I was close to it already. Then I had to start trying to stifle it, knowing I couldn't come home with a red face & eyes. He'll go to bed in an hour, and I can cry my heart out, without him knowing.... still trying to stifle..... we used to say that to each other all the time, "you're still the one". I even had it engraved on something for him on our 10 year anniversary... 41 years now... still the one.... Sorry for breaking down.... I try so hard to be strong... usually

Got phone call today from social security office, and his soc sec disab. has been approved - no soc sec doc to visit, no court to go to, will kick in in about a month! Notwithstanding, it's not EXTRA money, except for those who have no work disability. If you do have it, then the money from work, will reduce by the amount SS gives you. But if you don't apply for it, they will estimate how much SS would pay and doc you for it - so it has to be done! This is the first thing I had to do about his stroke that didn't become a huge ball of red tape! Now I did have a lot of work to do, filing the report and application online, but then it was done. This is the page to access the report & the application: http://www.socialsecurity.gov/applyfordisability/ I nearly got stuck with them making me the payee, which would turn it into a separate account that had to be spent for HIS stuff and I had to report on it every year. Not that I plan on going on a shopping spree, like HIS stuff is the same house WE live in and the same house WE have utitilities & taxes to pay on. This 'his' money to pay his stuff is an odd thing to say to a wife who lives in the same home & eats the same food. It's not like I'm a hired hand. I do realize there are probably idiots out there who would go on a shopping spree and then they would lose the house, but I'm basically biting all my fingernails and toenails watching our budget like a hawk, as this is way less money than we got when he worked. The 'his' money sounds very clear cut, but not so much when you already have a bank account that all your bills are set up, then instead of using that, I'd have to set up another account to pay our bills from, but it wouldn't be enough to pay them all, so I'd have to use some from the other account, and then it just keeps getting messier, which is crazy anyway, since his bills are MY bills, they are OUR bills and OUR home. Somehow she decided to let me use our joint account that I've paid our bills from for years, and it is the FIRST break I've gotten from any one I've had to talk to concerning his stroke thru this whole mess. This is do-able and I'm encouraged that at least one thing will not be a headache for me.

I didn't see a video on youtube, but did see a stage appearance version of the song. Wow, that piano player was sooooo good. It's a fun song, see why you like it Congrats on the step forward, I'm sure it will give new momentum to everything you do!

Nancy, I had forgot there was a number 5, which I just did AFTER writing the note. It's in my top note now!

NOW FOR SOME GOOD NEWS! Today's work: kinda laid back today, with the company and then I felt tired from getting ready for them, and didn't feel like doing any therapies till late afternoon, around 5, so we : 1. did the driveway practice walking, stopping at the 2nd car in the drive (rolled down windows on this side) and he walked backward, side stepped in both directions, knee bends, lifted heel backward (like up toward butt) and 2 toe stands (kinda). 2. English Immersion 3. EMS - completed 25 minutes of it. 4. When Bob lays down in bed, I usually do some laying down leg exercises with him, but he was so tired from not taking his nap today, that I skipped them, and just went for a few of his partial arm raises to keep his shoulder from freezing. He can't reach over head, it's more like straight up as I hold his wrist, and maybe just about halfway up is as far as he can go without wincing. I did a few of them, and thinking, do I feel his arm kicking in? Remember I had told you before that maybe I thought I felt it, or was it wishful thinking on my part, when we were doing sitting arm exercises. Well, about the 3rd lift, when I went to let his arm sink down, he was still holding it up! WOOOOOOOOOT! OH MY GOD! He is getting a little upper arm back! This is the first new thing in quite a time and we were both anguishing in the drought! Finally, something new to keep us looking forward FORGOT #5! - 5. So, he's in bed now, and I've turned on the subliminal stroke recovery CD that I got in the mail today, that sounds like the ocean

I learned sign language and interpreted in church when I was younger, before I had my son. Did you know you can find sign language lessons on youtube? Good luck, you sound like you have some great ideas

Wow, that is amazing. I just looked at your profile to try to see if you had any info on Mike there, and saw that his stroke was just in May. How in the world did you get the insurance to spring for a power chair so early on?!?!? (hints please, we still might need one!) Your husband is doing far better than Bob, who had his stroke Feb 29. I think it's going to just keep getting better and better. We will, too, but I think we will take longer than Mike, so glad to hear this good news for you 2!

What is a G tube? It would help to know that. I think if he's refusing his meds, he is just going to be making his life worse, without really understanding what and why it is happening to him. I'm thinking refusing to eat, drink, meds would result in his death, and I don't think he is able to get that. I would do it. If it's a feeding tube, Bob did have that until he was able to eat, and if he stops eating/drinking/meds, he'd get it back. My biggest question is does he understand that his seizures are because he isn't taking the meds? Or is it just "I hate the tube" without really understanding his life is at risk?