Janine,

Is there someone who can talk with Larry about this. Medical teams have to prove to the insurance company that the person is progressing in order to keep getting paid. Sometimes they stop for a bit so the patient can improve on their own before clocking up the limited hours paid by the insurance companies.

He has to decide that he is going to do the work to get better. Finally, no one can decide that for him. Is there someone who could talk to him (you would have to decide if your doctor is the right person) to help him understand that if he wants to get better he has to put in the work.

If you can help him decide this you can bet that therapy will help. If he does not decide to do the work, the therapy will be of little use.

I hope he is able to get beyond this hurdle. It may be he needs some time. Good Luck.

Lin

I don't know who he will listen to, if anyone. Larry has always had a self-destructive side...it seems to be coming out now with a vengeance. The only people who might get him to listen are his sister (Judy) and son (Eric). Judy was just here from out of state visiting, and he really perked up when she was around. Unfortunately, she's not here that often, given that she lives 1,000 miles away. Eric has been around a lot more, though not as much lately (he has a wife and a 2 year old and a new baby on the way, so his life is pretty well spoken for). I've talked with both of them about all this. Eric will be here Monday for a visit while I am at work - maybe some alone time for the two of them will help. Other than, I just don't have any great ideas. I too hope that he can get over this rough spot and that he starts moving forward again; it would be a shame if he has the opportunity to recover further and just decides that he doesn't want to.

-Janine

I've had trouble with Ray not doing the exercises over the years and at that stage he has always gone backwards. I am afraid it is a "man thing" as far as he is concerned with the "women" being his wife or female PTs all making him work when he just wants to take it easy. What I have found is that he will work well for men so maybe a male physio might make a difference. Somehow in front of another man Ray wants to show he can do the work. This is why I wanted a male shower nurse as Jeff or Len (whichever it is) also do half an hour's exercises with Ray once he is showered.

I think you are right that he is using this to regain a feeling of control, what he is not taking into consideration is how lack of mobility will limit his life. Maybe you should approach it from that angle. Maybe ask him how he sees the future and if he is willing to put some goals into place to get to a future that includes travel etc and is closer to the life the two of you had planned. I think if it is just stubborness then he needs some counselling or motivational coaching if that is possible. If not I would try to think of someone who he has considered a mentor or motivator in the past and see if they can help in this situation.

Sue.

When Don first had his stroke he lost his ability to be a self-starter. He also had apraxia of motion as well as apraxia of speech, meaning you could tell him to comb his hair and he couldn't figure out how to make his good (unparalyzed) hand/arm pick up the comb and run it through his hair. With apraxia, the brain can want to do an action, know how to do it, but not be able to tell the muscles how to carry out the action. I had to put the comb in his hand and help him pattern the motions to relearn combing. We patterned this sort of thing over and over again until his brain and muscles talked together again. It took months but he eventually overcame his apraxia of motion. Had a speech therapist not picked up on his apraxia of motion it would have been easy for someone to think he was unmotivated, stubborn, and defiant or lost too many IQ points.

Learning to be a self-starter---a separate issue from apraxia---took several years to come back. Don was a workaholic and anything but lazy pre-stroke so it was easy for me to understand that a stroke can cause physical changes in the brain making it hard/er for many survivors to be self-starters. I often cringe when I hear other spouse/caregivers label someone as being lazy when the stroke happened less than a year ago. Laziness or stubbornness may be true in some cases BUT new caregivers also need to be aware that there could also be other invisible stroke deficits at work that accounts for their survivor's inability to see the trees in the forest so to speak, the least of which is fighting depression and being overwhelmed with the enormity of the battle ahead of them.

Each of us has to analyze our care recipients deep enough to figure out what works and what doesn't, what could or could not be pre-stroke behavior, what motivates---like Sue figuring out that Ray works harder for males than females. For Don, I used his high IQ to make him aware of everything we were doing and why. For example, when I put that comb in his hand, or helped him with other therapies, I'd tell him things like "we're teaching your brain to talk to your muscles again" or "we're trying to sing these nursery rhythms because we're hoping to jump-start automatic speech" (song learned before age five are stored in a different part of the brain than regular speech). Someone else might have to find a way to jolt their survivor out of their self pity---like watching the Paralympics for example.

All I'm trying to get across is if we, as caregivers, label a survivor as being 'lazy' or 'stubborn' too early on in the process post-stroke then we quit trying to find other reasons for why someone isn't working at their recovery. And if we happen to voice these negative feelings out loud and there really is an organic reason holding the survivor back, then we've succeeded only in causing hard or hurt feelings.

Jean

I didn't know that about songs learned before age 5. Larry can sing the "happy birthday" song, and gets the "happy" word right every time, then goes into just humming, but he can do that with other nursey-rhyme kinds of songs. Interesting.

One of the PTs very early on told me to make sure that I always tell Larry EVERYTHING I am going to do before I do it - don't just grab his arm and start moving it around. That seems so obvious now, but to someone who's never had to think like a patient nothing is obvious. I've practiced that carefully from then until now, and I know that Larry reacts much better when I say "I"m going to move your foot off the foot rest", then wait until he nods, than if I just grab his foot and move it. The small things can be very important.

I think Larry works harder for men than for women too. Even in the nursing home I noticed it. Especially men who were a little annoying - saying things like "come on, Larry! Get the ball in the basket! I know you don't want USC to get a point - what kind of UCLA fan are you if you let USC get the basket? Come on! Come on!!" It's hokey, but he really did get into it, and would work much harder to throw the ball than if I said something along the lines of "throwing the ball into the basket will make your coordination better, and then think of all the things you can do to make MY life easier!". That's not exactly what I'd say of course, but I'm sure it's how it came across. Body languange and non-verbal communications suddenly mean a lot more than they used to.

Larry IS stubborn, and sometimes lazy. But mainly he's scared and does not like this new life he finds himself an unwilling participant in. I'm looking for a way to make him a participant again in his own life, and to feel like he has some control, and has the means to get back some of the quality of life that he had before all this happened. I'm trying to find a way to buy into this and to commit to investing the energy that it will take, and to trust people who want to help him. All of those things are hard do to, and I'm trying to help him, but both of us are struggling because we are still adjusting the new reality. Today I handed him something and he wouldn't take it and I looked at him with irritation - they realized it was his right side, which does not work yet. That keeps happening - part of me still wants it to all just go away, though I know that is not happening. I always feel surprised when these moments catch me - oh! His right hand doesn't work! I forgot! But, we are both of us getting better, even if the nurse is slow.

xxxoo

..jm..