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Topic Husband in denial? Won't take meds and making horrible decisions. Go to previous topic Go to next topic Go to higher level

By beadobee On 2011.11.16 20:39
I'm new here, but my husband who is 55 was diagnosed with PD 2 1/2 years ago. I've gone with him to every neurology appointment and supported him in every way, but I'm at wits end. He is supposed to take his meds 4 times and day and has only taken his meds 1 day at all 4 times as he should. I purchased him a watch that vibrates to remind him to take meds with no avail, as he ignores it. He says he doesn't feel different with or without the meds:/ He suffers from bradykinesia and does not have any tremors whatsoever. His balance is brutal and he staggers A LOT! He says he's planning on getting on our cabin roof that is so steep and replacing the roof with metal. Come on! No man who is 55 and roofing isn't his job would even consider this project! I got so mad I said "just get up there then and fall off and die so I can stop worrying about you!" I'm at a loss. He knows I don't want him to die, but I feel like he's in total denial. Any suggestions??

By lurkingforacure On 2011.11.17 07:33
I'll be blunt: either you let him do what he wants or get him committed. I don't know many women who could physically restrain their husband, even if he has PD. Those are the options we all have at the end of the day. Now, you could tell him that IF he keeps on endangering himself and not doing what the doctor says, you are considering having him evaluated which could result in a commitment, which might make him calm down and behave. But it's hard. I don't know how I would feel if I had PD and couldn't do much of anything most days, and on top of it all, felt like crap. I'd probably be rebellious and angry and have that "devil may care" attitude as well.

I wouldnt' harp on the meds. For us, it's a mixed bag, sometimes they work, sometimes they don't and there is no predicting. We can't plan anything and I wonder why we even take them. Plus they have side effects which make things worse usually.

There are several posts here about loved ones falling, injuring themselves, what have you, and the guilt that goes with not being able to prevent every little thing that can happen in the PD journey. You may want to read those, as they show that no matter how diligent, careful, thoughtful, etc. you care for your loved one, stuff is going to happen....and that's when the loved one is cooperating! All bets are off if your loved on is hell-bent on doing something ridiculous. That's when a call to the police to have a chat with the loved one might be in order, perhaps if the words came from an authority figure they might sink in a bit better. I had this issue with my non-PD mom about driving, it wasn't until a neighbor called the police and they had a little talk with her (I was there, thank heavens) that she gave up the car keys. I don't know why that made the difference, but it did. Good luck.

By karolinakitty On 2011.11.17 08:34
I learned something form our favorite doc whom we call "Giggles". You can have patients who will do as they are expected and be upbeat even with an incurable disease...then you have those who think they can do what they want..then when they go to the doc think they can then wave a magic wand..give more meds and the affliction will go away.....not much she can do about that except yell at them about that....then they normally settle in....

WHy not approach your neuro about this...let him/her know he isn't taking his meds regularly...he is trying to kill himself doing jobs he shouldn't....usually if it's a good doc they will talk to them about it...

Also see if there is anyone near you that might have PD..look for support groups and see if someone there can come have a word of prayer with him...

By Reflection On 2011.11.17 09:37
I think how to handle this depends on your sense of how your husband will react.
How much is denial, how much desperately hanging on to their pride - who knows? But if I had said I'd have my husband committed if he tried to do - whatever - he'd had been that much more determined to do that task, to show me (and himself?) that he could.
Another option is hauling out the old child rearing technique of addressing the motivation behind the expressed wish. "Oh, wouldn't it get great if we had a new roof?" Empathize - and hope that apathy takes over.
Good luck. I'm sorry it's so hard.

By mylove On 2011.11.17 12:14
I second Reflection's take, and offer one more thing. My husband is the same age, but he takes his meds and does really well. Making an assumption that he couldn't do something like get up on the roof doesn't work for him, because he's still really mobile and largely symptomless when he's on his meds. In fact, we did just that this summer: reroofed a shed. A little lower height, but still the same concept. Last weekend he was up on a ladder installing a new ceiling fixture. Frankly, he's just not ready to throw in his 'man card' yet.

The only way this works for us, however, is that he agrees on two things: 1) that I (or someone else) help him in every way I can so that I'm spotting him on dangerous things and he's not doing it all alone, and 2) he communicates well enough about how he's feeling and doesn't press getting things done when he's not feeling 100%.

I know you know your spouse better than anyone else, so take what works and leave the rest. But I wonder if you could broach the subject with more of the carrot than the stick. "Yes, if you think we can get this job done, let's do it. But in order for me to agree to that, I need you to agree to accept help, and to be 'medded up' so that we all stay safe." That's a fair deal. Despite what he says I think he'll find that the benefit of being properly medded up will be apparent once he tries to do something physically strenuous like building, working, etc. Maybe he doesn't feel any benefit in the day-to-day, but I bet it will be different if he's trying to do something really active. And even if he doesn't feel any different, then what is he hurting by humoring you and taking them?

For men particularly, and especially those who are still young (and 55 is young), it's terribly hard to sit down in a chair and just quit on life, no matter what their bodies are going through. I think we do better when we remember we're partners and not prison wardens.

Only you know your spouse, and if he has dementia or is past the point of reason I guess that's another can of beans, and I can't speak to that, so this isn't one-size-fits-all advice. I know that the driving issue is one of those things that you can't bend on.

By parkinit On 2011.11.19 19:52
This is a tough one and something I have just come to terms with myself lately. I could chase my spouse around all day, worrying about him, or just let him do what he wants to do - not throw in his "man card" as someone so appropriately stated. I did chase him around worrying about him and this made me a nervous wreck. Now he gets out and works in the yard, pulls leaves off the pool cover while unsteady on his feet, and works around a sloping pond. He LOVES to do these things. It makes him feel useful. After fretting and having many heated conversations, I've decided to LET HIM LIVE. My only stipulation now is that when he is working on the slope near our pond, he has to wear a baseball helmet to protect his head. I HATE the thought of him falling, which he has done many times, but I've also resigned myself to the fact that this is how he will probably die - through a fall - yet, he was doing what he enjoyed and not stuck in a chair being "protected." Does this make sense? Again, I've had to work through this over several years, but this is the place where I'm at today, and it is a good one for us - until the next fall.

By cmonge On 2011.11.20 23:38
My husband is 54 and has had PD for 3 years. He can't take any meds because he has had so many side effects. He too is in denial and thinks he can do anything. I just finally gave up and let him do and eat what he wants. It's really all he has at this point. You don't want them to die, but you don't want to spend the days you have fighting with them either. If this is what your husband wants to do, then you can't stop him. I know it's hard but they still want to feel useful and eventually they will realize their limits.

By poppadum On 2011.11.26 15:32
Hubby has always been an avid diy man which he used to be good at. Lately he started doing really really dangerous things like using electrical tools right next to an open ground level well which is normally closed with a heavy + a lighter lid. He wanted to use the water from the well to water the garden. He asked a strong friend to remove the heavy lid. To pump the water onto the garden he used an electric pump. Because of his Cardioverter Defibrilator implant he is not allowed to go near electrical things in case his device goes off and gives him an almighty shock, mayby sending him straight into the well. On top of that he has loss of balance. I caught him about 4 inches away from the well, with the water pump working and using a electric saw at the same time. Really shocking when I discovered him in that situation but I realized immediately that I shouldn't panic, wait until he switched the saw off, and then remind him of what his heart specialist said: no electrical tools! He's simply not thought about the Implanted Defibrilator because in the meantime he can only process one thought at the time and that he frightened the life out of me when I saw what situation he was in. I told him I nearly dropped dead with shock and fear and please not to do that anymore because I really cannot handle the stress. He accepted it. I closed the well but rang the strong friend behind hubby's back and asked him to put the heavy lid back on, underneath the lighter lid one I knew there is now no way he can remove it by himself. The endless trying to do what he thinks are useful jobs, is obviously to prove to himself (and others) that he is not useless yet. I'm a pretty good diy-er myself but I have arthritis and although I'm still quite capable of repairing things, it's amazing how many things I "cannot handle anymore due to the arthritis"! All of a sudden our extension leads have lousy plugs which "I cannot get out of the sockets" anymore and could he replace them with plugs which have handles? Not all in one go of course, but it keeps him busy for hours as nowadays it takes him ages to figure it all out (I check them at a later time) and you wouldn't believe "how much help" he's been when the task is completed! And I make sure I tell our friends when hubby is present, stating that otherwise I would have problems each time I had to use the original plug.
It's amazing how many (little things and as simple as possible) tasks he can tackle. Of course he makes a mess of the whole area he's "working" in but at least he still keeps his self worth.
I also have "terrible difficulties" reading instructions for various implements. As he has always been brilliant at figuring out instructions, even translated literally from Chinese of Vietnamese, he reads them to me because "I'm having trouble reading the small print" or "understanding the literal translations".
He seems to be much happier now I'm "getting pretty useless" at diy and he can "take the lead" to keep me on the right track.
It won't last forever of course, but I'll worry about that when the time comes.

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