We've had a wonderful caregiver for several years and we trust her as a family member. So, when she came to me recently and said she had to leave because my husband was being inappropriate with her, I was completely and utterly shocked. While I had noticed a slight change in Jamey's behavior, I didn't realize the seriousness of the situation at the time (apparently, it had been going on close to a year). So, I confronted him and was equally shocked by his response. He didn't deny any of it, in fact, he didn't seem the least bit remorseful, or concerned about it. That's not my husband!
So, I dove back into full-time caregiving, still puzzled (and angry) about what had happened. While sorting through his medication, something didn't seem right about the dosages. When I looked at the amount of Mirapex he was taking for his RLS (Restless Leg Syndrome), it was somewhat higher than what he'd been taking before. Most family caregivers know Mirapex can be a source for addiction and lack of impulse control. People have gambled away family fortunes, gone on spending benders and become addicted to porn because of too much Mirapex. In our case it was porn, and acting it out.
Come to find out, because of the beginnings of PD dementia (memory deficit), Jamey had told the caregiver to increase his Mirapex so he could sleep better without his legs moving so much. Unfortunately, because he had always managed his own medications before, the caregiver didn't feel it necessary to let me know of the change, and rightly so--BEFORE dementia.
Once notified, I contacted the doctor and he immediately cut the prescription in half. In addition to the addiction he was entertaining, he had also become fecal incontinent. In the course of 2 weeks he had fecal accidents up to 3 times a day. I was so tired and frustrated.
Jamey's neurologist, confirmed that self unawareness and impulse control are all biproducts of this medication agonist (self unawareness explains why Jamey didn't even realize when he was having a bowel movement). Why is this still on the market? Because it works great for RLS! And for many people it doesn't cause problems. In fact, Jamey hadn't had issues with this medication for 25 years. Now, just by a slight increase, it unleashed a monster.It's been almost 3 weeks since we cut his dosage in half and I'm seeing a glimpse of my husband again. The fecal incontinence is all but gone, and he is showing small signs of tenderness again (although, the neurologist tells us apathy is probably here to stay--part of the disease rather than medication). And, if I'm honest, the apathy has been one of the hardest things to deal with. He really just doesn't seem to care about what's he's doing or who he's hurting. Of course, knowing this is a symptom of PD still doesn't make it easy to deal with.
I don't share this to embarrass my husband, or to terrify those who are not there yet (remember, you may NEVER be). I just want you to be aware of changes in your loved one's personality. It could be PD dementia, or a reaction to medication. Thankfully, I do all our finances, so I would have noticed a spending spree, but that is also something to watch for.
I'm not going to tell you everything is all better and I'm over it. Even with the knowledge that it was the medication, I'm still a little uncomfortable around him now. I'm sure that will go away in time. But for now, prayer is my constant companion, and I keep caring for him as best I can.
If you have a caregiver that helps out, be sure you have her/him report any change in medication and/or personality, finances, etc. Catching it early, could prevent losing a good caregiver or a lot of money.
I found this 30 minute video very helpful.
