Janine,

Have you discussed with Larry's primary doctor having a visiting nurse come to the house to change his catheter at regular intervals?

Does the college where Larry taught have a speech pathology department that works with people/clients in the community? Maybe he'd be more open to doing speech therapy in an academic setting? The colleges with speech programs often have senior students who will make house visits to help with speech therapy for low-cost private pay in the summer months. You'd have to get recommendations from the head of the department. You'd also need to get Larry on a waiting list now for fall classes, if he does sound more open to doing therapy this way.

Jean

Jean, Kaiser does provide a visiting nurse who comes to change the catheter; she has been here once, a couple of weeks ago. She left a couple of extra bags, and showed me how to change them, so when we sprung a leak a couple of nights ago I was able to change it with no problems. So, that is something!

I don't know if there's a speech pathology dept. at Larry's school, but they have a well-regarded nursing program, and those things sort of seem to go together. I'll check, that is a great suggestion. His department chair has a speech impediment herself and is a good friend, so I'll bet she can point us in the right direction. Thanks for the idea.

-Janine

Gosh Janine, I would so like to "help" but this is not an issue I have faced with Ray as he is okay with going out, going to therapy etc. He is sometimes late out of bed in the morning ( bringing on a BM problem) but once he is up he is portable.

The only thing your post reminded me of was agrophobia. I used to talk to the husband of a woman with agrophobia and she was always reluctant to go out, try new things etc. He tempted her out with small treats, but once out if she chose to stay in the car he was okay with that and would use the drive-through at Macdonalds to get her coffee etc. He sometimes travelled with a care worker so he and she could "sandwich" his wife between them and she didn't have to have contact with crowds. He also used back entries to doctors etc as she was afraid in the reception area, particularly with bright lights, sound systems, noisy children etc.

I'm wondering how you negotiated a problem with Larry prior to his strokes. He is by all accounts an intelligent man and if he can manipulate you maybe you can bargain with him in exchange. Maybe if he does certain things you will do.... I guess you know best what the reward would be. I keep reminding Ray marriage is a 50/50 deal. I do so much, he has to put some effort in too.

I am sad you are struggling with this. Maybe the area affected by the stroke is key to the issue. Can you discuss it with your local doctor or contact your neurologist and see if he/se can further clarify that for you?

(((Hugs))) from Sue.

So sorry to hear of the difficultiues. Is Larry on any anti-depressant medication? He sounds very angry and frustrated and depressed. And who could blame him- or you for that matter- for having those reactions. I think that depression can make the stroke survivor unwilling to try therapy. It can become a huge control issue. If he is not on any meds, you may want to talk to his primary care doctor about it.

Unfortunately, you also have to decide what YOU are willing to put up with and where you are willing to draw the lines. You cannot physically force him but you can tell him the consequences-- but first, you need to figure out what the consiequnces really are for you and him. It is his life, but his unwillingness to try to get better has a huge impact on you. As a caregiver, you are (imho) entitled to decide what you are willing to accept and what you are not.

My mother has- on occasion- refused certain kinds of therapy and some of it I am willing to accept unhappily, and some of it I am not. She ultimately refused to work on the therapy that might help her read. We decided that there were no consequences for that. I think it would make her life better, but it breaks her heart to struggle and fail and so she has decided for now to give up. I wish she wouldn't and hope that she will change her rmind-- but ultimately it impacts her more than us, and I am not willing to impose consequences for it.

With respect to physical therapy, we have a TENS unit and use it with stretching. If she is unwilling, we try and talk her into it. When that does not work, I will let her get away with one day of not doing it. More than that and the consequence is that I have left the room and pretty much refused to deal with her. No company, no backrubs, no special treats until we get the therapy done. I go in the other room and cry because I feel so mean BUT I do it. I do not want her muscles to atrophy or her to become even more dependant. I am sure some people will say that this is not appropriate and that I am treating her like a child but frankly when rationality doesn't work - you use what does. She does want to get better ( and is on an anti-depressant) so this has generally worked.

The consequences for not going to the doctor, or refusing to eat or shower or being difficult to the paid caregiver, have also been made clear. If she cannot get adequate care at home, she will have to go back to the nursing home. Period. She gets to pick the days but there have to be 3 showers a week unless she is sick. She can help pick out the food but she has to eat. We try to schedule outpatient therapy, and doctors appointments when it works best for her-- but she has to go. She is still dealing with incontinence- and that is okay I will happily change her for the next twenty years- but she has to agree to be put on the toilet to try a few times a day. If she refuses these very rational things for more than a day or so we talk about getting her back in a snf. Again, all of this is much easier because she is verbal (and 130 pounds- so we could physically make her if we had to) but the emotional impact and the control stuff is the same. She can choose to give up and that is absolutely her right-- and if she makes that choice I will still love her BUT I will choose not to take care of her.

These are all questions of balance. What she is willing to do impacts what I am willing to do. I am willing to make a large part of my life taking care of her, but only if she is willing to do the things that make it possible. I would put her back in the SNF (and then cry for three mnths straight) if she stopped working with us. She understands that and is willing to try.

With respect to the family backing off - it happens. One of my Mom's sisters- who she was exceptionally close to- has visited exactly twice in the the 15 months since the stroke; her brother once. Most of her friends have disappeared. It is hard and depressing and frustrating to be with someone who is badly hurt by a stroke- and many people don't want the burden. It is easier to just disappear.

I have definately damaged relationships - probably irreparably- because of my anger at family and friends who have not been willing to step up. But every once in a while somebody surprises me with their kindness and grace and reminds me that I am lucky to be whole and healthy, and to still have my mother in my life. I try to hold onto those things. I hope you can too.

Hoping that things get better,

Mary

Mary and Sue - thank you so much for your kind and helpful advice.

Yes, Larry is on 2 anti-depressants. Wellbutrin is one, and I can't remember the name of the other without getting up to go look, and I am just too tired to move, so please excuse me! I don't know if they are helping or not. How do you know with someone who is non-verbal? He does seem happy some of the time, but I have no benchmark so I don't know how he would be without the meds. Anyway, I don't think it is hurting him so I'm leaving it alone.

Larry's son came by Friday and talked with him about all the appointment issues. He pulled out all the stops: "Don't you want to live to see your grandchildren growing up? Don't you know how unfair this is to Janine? Don't you love your own children enough to want to be here for them?" And the most powerful weapon of all - he cried, and he's a pretty tough guy. If drama and guilt will help, then I think he got a good dose. Larry's brother came by Sunday, but didn't lay into him like Eric did. That's OK, they don't really have that kind of relationship. I think some of it may have sunk in, because Larry has been as loving as can be with me. I came home from work tonight and he was sitting in the wheelchair in the back yard waiting for me, and had pulled up a patio chair for me to sit in (not easy for him to do). When I came over to say hello, he took my hand and kissed it, and gave me such a sweet look that I almost burst into tears. After all these years, and even after the stroke, this man still makes my heart go pitty-pat! There are not many decisions that I can look back at with total conviction that I was right, but marrying him is one, even if the "for worse" part is pretty bad right now. I'm a lucky woman, believe it or not!

I don't know how to make consequences a reality for Larry, but there seems to be a lot of wisdom in that idea. If he won't go to therapy, then what do I do? This seems to be a lot like training a cat...if he doesn't want to do something, then what? I had a cat once who clawed the couch, and I decided that the consequence would be that every time he did that I would put him outside. As you can imagine, he learned in about a day exactly what he needed to do if he wanted to go outside. I think Larry is kind of the same way - he hates being told what to do and being fussed over, so if he wants to be left alone all he has to do is not go with the program, and presto! Although I don't actually believe it's that willful, I think it's more like what Jean said and that he's not grasping the big picture of actions/consequences yet.

I'm going to have to find a way to get tough with Larry on some of these things, but in such a way that he understands why and that he knows that the consequences mean something. I'm not sure yet how that will work. He has an OT appointment tomorrow (2PM, not in the morning!), and we'll see how that goes. I talked to him tonight and told him he has an appointment for a checkup tomorrow. I was vague on purpose and didn't use the word "therapy", since I think that puts him off. I'm hoping he will go - maybe all of this has had some effect. If not, then I need to keep working on "Plan B", whatever that is!

xxx's and ooo's

-Janine