Disagreeing With the Speechless Survivor

[jriva]

Because my speech is not so good any more. I cannot argue my points well, which makes me even more mad. I can't stand it much longer!

 

Hi Everyone,

 

This quote is from a very old profile I was poking around in today and I thought it might make an interesting topic to compare notes on.

 

As most of you know, my husband has worked very hard these past 4 years to work up to his current 60-70 prompted word vocabulary---less then 20 of them he can say spontaneously without prompting. Early on, at the point in his recovery where his speech was still limited to mostly yes/no answers that weren't even very reliable, we were also going through selling off his business, our houses, having auctions and other serious stuff and I was trying to pry information out of him as best I could. To say that we were both very frustrated, seems like a foggy nightmare now, but at the time it was stress-city, to the max. We've known each other for over 30 years and, like most people who have known each other that long, I think I know his stand on most issues. So, I unconsciously developed this pattern of arguing the pros and cons of our downsizing details with myself. Sometimes in a very loud voice, if the pros and cons were far apart and one side of me had a hard time getting the other side to see its logic. And more than once, Don would be looking on as if I'd lost my mind...at least this is what I thought at the time, but now I've come to believe he probably wasn't processing the words as fast as I was flying them back and forth at myself.

 

Can any other caregivers or survivors identify with this? If not, how do you handle it when the survivor can't present their opinions, and you need to hear them?

 

Jean :wub:

[spokangie]

This is from a caregivers point of view.

My husband has a hard time expressing his views because of his aphasia too.

 

He gets very frustrated and angry at himself when he can't find the right words to tell me what he wants. There have been times when both of us were in tears from it.

 

I am going through this every day since my husband's stroke last July. Even after one year he will say no and mean yes or vica versa.

 

We did the downsizing and selling of our home too.

I don't know how many nights I went to bed crying and frustrated and terrified that I am doing the wrong thing. ,O,

I do know that I made damn sure that it was what he wanted. It may have taken me days to get it out of him but eventually the right answer came. I hope!

 

For instance when the subject of selling the house came up. We knew that if anything happend to him we would have to sell and downsize. We planned on selling it once he retired in 2007.

Retirement came early in form of a severe stroke. He had some banked time left, we lived on that while our application for SSI disability was being processed. He officialy retired from his job at end of February this year.

 

We are very fortunate that we can live carefully but comfortably on both retirements. I planned on returning to work sometime this year, that has been put on hold for now. He needs someone to be with him 24/7 to take care of his needs.

We didn't think of adding insurance that would cover an outside source to help. Our insurance is Federal Blue cross and even with the top coverage it does not provide that luxury.

He does have family but they work during the day, some have helped but mostly others have opted not to. ie... his sons.

My daughter in law is a caregiver in a nursing home and has never offered to help with his care. I asked a while back if they would mind coming and sit with him so that I can do some shopping and not have to worry about him. I never received a response to that so I don't ask again.

I do what I can when I can. As time goes by it does get a little easier.

I don't want to take him to a adult day care even if there was one here because of his lack of speech. He also needs someone to attend to his needs in the toileting too, that is another concern. In the begining he had developed the fear of me leaving him. Even with his sister attending to him he still watched the clock and waited for my return.

You see we have been together for four and a half years married four years. His family made it very clear to me that they didn't trust me with his care and applied for guardianship a month after his release from the rehab hospital. They claimed that they knew him longer than I did and he would be in better hands with them.

 

It wouldn't surprise me at all if they didn't put the idea in his head that I was going to leave him because of his condition.

He is much better now with me gone for an hour or less. I have learned to do my errands early in the morning, sometimes he comes with me, other times he will stay at home by himself.

I had found him twice in full seizure on my return, you can't imagine the fear that goes through you at that sight.

The guilt just about kills you. :

I had a terrible time trying to get him to look at properties, initially we were planing on bying again but in Bellingham WA. Closer to my family accross the border in Canada. Instead we found a cozy little duplex for rent, accessible to him all on one level.

Funny thing is we took a walk down by the old house we used to own a year ago and I could see that he misses not owning his own place.

 

He was having a seizure almost every month, I decided then to stay in Spokane so that he can be close to his network of Dr's . I couldn't see him going through with seing new Dr's and possibly starting over with medication trials.

 

He was not happy to hear that I cancelled our plans, he knew how much it meant to me to be close to my daughters and my family. Deep down I could see releif too, I felt that he was also afraid of the move and starting over in his condition.

 

I have had to get power of attorney so that I can deal with the banks and our other financial obligations.

We sold our house by ourselves and that was a chore too, we didn't have enough equity to sell by realtor. It was not easy showing the house by myself I was afraid of who might come and what may happen. Luckily we had no problems and I made sure I set a specific time. I also did not let them know that my husband could not walk on his own, or speak.

I found that there are a lot of good people out there who did not mind coming to the house to sign the papers, what a godsend {angel} they were.

The same thing happend when we had to sell of our second vehicle, the dealership brought the vehicle of my choice to the house and the paperwork.

That was another conflict that I had with him, one day he would want to sell it and the next day he would say no. I remember one day it got so bad that I went and started to pull the for sale sign down. I could hear him shouting in the house his favourite word then and please forgive me for writting it, "damn, damn".. During those early days he would hear me repeat a word and that is the word he would use for everything he asked for. There was a time that "door" was everything, if I said basement, that would be his next word.

After his first seizure in December he began to say sentences. Small ones but they made sense. Even now he will say, "this is something to substitute" :wub: God love him, he is trying so hard.

He learns by repeating, and that is the hardest thing right now for me to do, I ask him to repeat, we play word games but he looses interest.

That is when I look straight at him and tell him that I am there to help you, but you have to want to also. Sometimes I get the look as if to say how do you expect me to do that, can't you see I am trying my best

Do I know exactly what he wants? Not all the time.

I ask him numerous times before I go and act on it just to make sure it is what he wants.

It is not only asking him I also have to actually show him if that is what he wants. Confusion is with him daily, some days are better and some are not .

He lets me know by pointing, when he wants me to check his blood sugar he now pinches the fingers. He can use only his left hand. He is a joker too he will give me the salute finger too sometimes .

I am sooooo happy that he has not lost his sense of humor. The antics he will pull in front of my girlfriend are hillarious..

 

I make sure he is still fully involved with the houshold finances just by knowing what is coming in and what is being paid when.

He will look at a bill and pass it on to me. I pointed out that we pay bills on line now and showed him how everything gets paid. He was pleased with that.

He used to take care of that and I think it still upsets him that he can;t now.

I told him the other day that he sounded like the Jack in the box commercial, the fries one, yes no,

 

From what I read and learn in the chat room here we are not alone. There are many survivors and caregivers that are as confused as I am.

I can't help but feel slightly jelous of the survivors that are able to speak.

That is what I miss the most about my husband is his beautifull voice telling me how much he loves me, or just good morning beautifull {{blush}}

The only time he will tell me now is when I tell him how much I love him then he repeats it after me. :wub:

Time is what we all need, and a whole lot of prayers.

 

Cheers **Happy Dance**

Angie

[jriva]

I do know that I made damn sure that it was what he wanted. It may have taken me days to get it out of him but eventually the right answer came. I hope!

 

Boy, I sure can identify with this statement! Taking several days to get answers out of someone with aphasia and apraxia can be SO stressful. Probably every couple who has to deal with this stroke deficiency also has serious, non-stroke issues that also need to be resolved . i.e. when we need to communicate the most, we can't. We've even had to have a speech therapy help try to dig the information of my husband's head.

 

How have other caregivers handled this topic of disageeing with speechless survivors? How have you survivors felt being on the other end of this problem?

 

 

Jean

[marlen]

HI JEAN,

 

MY SPEECH IS FINE. MY THOUGHT PROCESS IS SLOWER AND ARGUING IS TOUGHER FOR ME, SINCE MY STROKE. I FIND MY VOICE LEVEL DOESN'T RISE THE WAY IT DID, AND IF AN ARGUEMENT CONTINUES, I BEGIN TO GET AN UNCONTROLLABLE LAUGH. THIS UPSETS MY WIFE BECAUSE SHE THINKS I'M MAKING FUN OF THE POINT SHE IS TRYING MAKE.

 

IF I GET UPSET OVER SOMETHING, I FIND I GET MORE SARCASTIC TO GET MY POINT ACROSS. MAYBE ALL THE MEDICATION I TAKE TO KEEP ME CALM, HAS AN AFFECT. MY TOLERATION LEVEL AND PATIENCE ARE MUCH SHORTER THAN THEY USED TO BE.

 

REGARDS,

 

MARTY

 

P.S. DON'T CROSS ME

[Guest PERRYS]

Hi,

 

I'm a survivor, Christmas day 2000, and I can't talk much at all. I have no problem understanding others, but I just can't respond more than shaking my head yes or no. My stroke left my brain thinking as before, just the thoughts have a lot of trouble getting to where they're supposed to go.

I can read just fine, understand just fine, but I can't get my thoughts verbalized. We've been married for 25 years so I can agree with her knowing how I feel on most things, but sometimes things are more than just a simple yes or no answer. That's when I write out how I feel with the computer, I know that is not an option for some survivors.

[spokangie]

Perry, I only wish that my husband could communicate with the computor, but he can't. He can read but to himself. If I ask him the letters of the alphabet he can't tell me. His thought processes differently than what he sees. Or something like that. I beleive it is called apraxia and he has a touch of that too.

 

I am happy to hear that you are able to sit down at the computor and let him know, I can only hope that one day he will be able too.

 

Keep it up.. :wub: **Happy Dance**

[jriva]

Angie,

 

My husband has apraxia, too. One book I have defines it this way: " Inability to perform purposeful movement even though the muscles are not paralyzed and the patient understands the task. This presents as a problem in planning or sequencing a desired movement." Another book uses the analogy of a car with a transmission problem.

 

Apraxia is why in speech classes you spend so much time doing things that seem so totally unrelated to learning to speak but are really teaching the brain to sequence. If you can't sequence your tongue or your fingers/arm because of apraxia, you can't write, type, speak and do many physical tasks. This is why they say writing and speaking come back at the same time and rate because once you can sequence for one, you can sequence for both. But I'm sure you've been there, done the apraxia homework routine too.

 

Perry, count your blessings. Jean :wub:

 

Back to the original topic of this thread: disagreeing with a speechless survivor. How do caregivers and suvivors work this out?

[dorothy]

Because my speech is not so good any more. I cannot argue my points well, which makes me even more mad. I can't stand it much longer!

 

This is what I am trying to say! Exactely.

 

I am a survivor, too sept. 11, 2000. I couldn't say anything. My words were all over the place and couldn't make sentences nor words. I had tons of speech therapy. Reading is still hard as well as communicating. Writing is ok but it is slow.

 

It is like I have a "script". Basic things to start a conversation but beyond that forget it. Hence the silence Conversation has ended But I try.

 

My mind, understands what I am saying, but i can't communticate it properly. Hence confusion So I keep my mouth quite and just smile or show an expression to show their responce.

I tend to see the word in my mind, but when I talk out loud something else happens. And the worst thing is, I don't even realize it. Like I say red in my mind, but I say it is blue. The worst thing is I don't even realize that I said blue because in my mind is red. What ever, I am getting you confused. And sometimes, I really don't even understand what I am told, but sometimes I am correct?

So I have to verify things in order for me to make sense.

 

As far as my old job, I use to do a lot of talking and people responded to what I was saying. Now I can't, my points are all over the place. That kills me

So frustrating to say the least! Hence arguments

[nells]

Im a suvivor, my speech is not to bad, i do muddle words up and stuuter, but i think i do preety good. What really makes me angry is when people finish my word for me, or say It ok i know what your trying to say. Thats not helping me at all. oh i know they mean well, but it embarreses me. I have told my family that i want to talk for myself, but do they listen, they have no patience, to much in a hurry to take the time. I know i'm slow and can't get the words right, I am not perfect, but then who is. Just though i would give you an insight from a suvivors point of view.