For those who care for someone with Parkinson's disease
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As this disease progresses, and dementia sets further in, I find myself asking more and more....am I being a bad parent? If my husband didn't have this disease, and lashed out verbally like he has been doing more and more lately, causing all sorts of anxiety in my children, would I leave him? At what point does it become child abuse, exposing them to the madness that is our home? Does his having dementia excuse the discord that they are exposed to? If it's not OK to expose them to mania like that if he were healthy, why is it OK to expose them to it just because he is ill? Is there any justification for forcing a child to live in a home with an increasingly angry, belligerent dementia patient? Like it or not, he is their father and they take cues from his behavior, like screaming and making (always empty) threats is a normal way to deal with things, and I don't want them to think of that as acceptable behavior. Are they going to resent me one day, when they are grown, for bringing them up in a home steeped in this environment? Are they going to say I should have done more to provide them with a less stressful home? Will I regret having allowed them to grow up this way? What will I look back and wish I had done differently for them...will I regret keeping their dad in our home this long? At what point do I choose that my children's mental health is more important than living with their father? And then where does the father go, if he isn't physically required to be in a facility of some kind yet? There is no question that the kids are much happier when he isn't in the home...so what do I do about that? How do I split my allegiances to my husband or our children, when they become at cross-purposes? As a parent, isn't it my number one job to advocate for my children and protect them first? How does that fit with a parent with parkinsonism and dementia? I don't know if there are even answers to these questions, these are just some of the things I struggle with every day, in addition to working full time and being his caregiver and raising the kids....  It's getting harder and harder...
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Busymom, I'm a child development Ph.D. -- In my non caregiving life I work to train domestic violence and child abuse staff (among others). These are such critical questions you ask. I am pretty tired tonight, so I won't respond right now, but I promise you I will think about this and write something clearer. For now I would offer language like this-- "When Daddy is himself you owe him the normal respect -- you need to listen to him and behave etc etc etc .... When Parkinson's takes over and Daddy is not himself, you have my permission to walk away from him, and I will support, protect and shield you" We sent our 15 year old to boarding school, not directly because of her dad's dementia (she's my stepdaughter) but because for a range of reasons our household had become untenable as a place for her to grow up. It was a very very good decision and she (now a happy and highly motivated college freshman) and I and she and her dad now have a very good relationship. [parenthetically, the best boarding schools have tons of scholarship money for good students from families of modest means, so money is not necessarily an obstacle.] What a tough tough situation you are facing. How old are your children? |
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Busymom, I think all of us with kids still at home have asked ourselves those same questions many times. I don't know the answers, if there even are any, but I do know that no matter what I do, no matter how hard I try, I have already made parenting mistakes because of PD and will make more, and there will be regrets. I hate that I cannot be the parent I could and would be if we didn't have PD in our lives. Children who are the victims of physical abuse by others are removed from the dangerous environment and away from those who would cause harm. Why/how would or should emotional trauma be any different? We have to protect our children from harm, regardless of the type of harm. As you asked, though, the problem is figuring out at what point the emotional trauma becomes too overpowering and unhealthy to be able to reasonably continue enduring. It's individual, and I think we cope as well and as long as we can until it is just too much. Everyone has a different breaking point, and we need to be aware of when things are getting close to that point. Here are some things I now do that have helped me and our children cope, maybe they will help you as well: For several years now, I have asked each of our kid's teachers (and school counselors) to let me know if they notice any unusual behaviour or grade changes, because to me that would indicate the home stresses are too much and something must change. I also no longer make our kids do things with their dad. This has been a huge help in us coping, because it took the pressure off of me to try to get the kids to spend time with their dad, when they never wanted to and there was always an argument....and it took the pressure off of them because they weren't on edge worrying about when they would "have" to do something with their dad again. I realized that our kids were avoiding their dad because they didn't want to be hurt again: they are just trying to protect themselves from further emotional injury. I totally understand because I have emotionally detached from my husband to a large extent myself for the same reason. I can only be insulted and hurt so many times before I start to withdraw, and yes, I know my husband is sick and cannot help it. So, as one poster put it, we are essentially roommates. At home our kids stay in their rooms almost all the time, which cuts down on the stress that interactions with their dad could cause. I take our kids to school events, their activities, etc. and leave my husband at home. They don't want him coming and I doubt he could even go to many of them... climbing up bleachers full of people....trying to find a restroom and get to it quickly in a strange place....so I no longer force it. We also no longer take family vacations for the same reasons. These changes have helped us manage my husband at home as long as we have, and my husband has dementia and cognitive issues as well as the hallucinations and delusions to go with his PD. And finally, be selfish. You may need to "choose" your kids over your husband ("I'm taking our son Billy skating with his friends instead of staying here at home with you" -and no, you would never say this but this is essentially the "choice" you are making)-but your child needs quality time with you and just you, and away from PD. And while I agree that we also need to spend as much quality time with our PWP as possible, I don't think any of us will look back and wish we had spent less time with our children and more time watching our PWP sleep. My kids worry so much about me getting sick or having a stroke, because they worry about what would happen to them if something happened to me. I have found that by being selfish and spending time with just them, they can relax a little bit about this fear. I hope this helps. I could say so much more but we all know how hard our situations are and we trudge along as best as we can until we just can't anymore. Hugs, lfac |
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Thank you Violet and Lurking, Violet - we've got an elementary schooler under 10 and a middle schooler, so both pretty young still. I hate too, that I can't be the parent I would be without PD in the house....I feel exactly the same way. |
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Hi guys, I hope that you don't mind me asking. Are your loved ones aware that they have dementia? Have they been told? If so, how did they react? I read often about young onset patients (mainly AD) speaking about their diagnosis and I'm amazed at their insight, although I'm sure that a lot of people have dementia and are unaware and would deny it vehemently. |
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Daisy, I think my husband knows that he used to be able to do things that he can't do anymore, like drive, use a computer, put something back where it belongs, etc., but he will deny responsibility. For example, if I find that he has put the milk on a pantry shelf or in the oven, instead of back in the refrigerator, he will deny that he is the one who did that. We have a lot of denial in our house over things like this and to keep the peace I just let it go. I don't even really care who did it except that I don't want it to happen again and ruin another carton of milk. I met someone recently who has Alzheimer's. I never realized how different Alzheimer's is from the dementia we are dealing with. She repeated herself 7-8 times in less than a few minutes: my husband does not do that. Rather, we have significant executive function problems, such as how to get from his lift chair to the bathroom-sometimes he gets confused about where the bathroom in our house is and how to get there. He has also done things like put soy sauce in his cereal and other odd food combinations. Anyone else's PWP put spaghetti sauce on bananas? The hallucinations and delusions don't help. I usually go with it because that's what you're supposed to do, but if he is getting ready to take action, like try to get in the car, I will remind him he can't drive until the doctor clears him. Sometimes he gets mad and denies that we have these cognitive issues and other times not, it really depends on the day. I now understand what a blessing the ignorance of losing cognitive abilities can be. My MIL has non-PD dementia and is in la-la land and happy as can be. I wish my husband could be as carefree and happy. |
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My husband ( who is now living in memory care) knows that he has almost total memory loss. He knows that he can't drive. He laments that he can't help me with bill paying or doing the taxes, or managing the garden or, really anything. It makes him very sad. He says he feels useless. We talk about it. EVERY day when I see him he asks again why we are not living in the same house, sleeping in the same house, and I walk through the conversation about how afraid and disoriented he was at our house. Just 2 days ago we had a long and very connected talk about that. He helped me understand that when he asks me that every day he is not trying to talk me out of the decision (which is how I had been taking it) but instead is trying to work through, again (since he can't remember) what the reasons are and why it is ok for him to live in the memory care place. He then typically tells me that I made a good choice in the place I selected, and that he thinks it is well run and that the staff care. It was a great relief to me to understand that he is not trying to change my mind, but to find peace of mind for himself. |
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Violet, and I guess everyone who is or will be dealing with this, I read something recently about this very issue. I wish I could remember where, but think it was someone who moved her mom into her house with her husband and kids and tried to take care of her, thinking how great it would be, but realizing far too late that she was very wrong and just not able to do it. She wrote a book about it and the article was a bit of a review about that book. The main point that I got out of the article was that for the patient with cognitive issues/dementia, it's like waking up every day in a world that doesn't make sense, day after day after day, and it makes less and less sense as time goes on. Things that were so familiar are not anymore- people, places, things, activities. I think how scary that would be, to find yourself in a different foreign place every day, but not for a vacation, and you never get to go back home. No wonder my husband gets so frustrated, angry, mean, depressed. Sometimes if my husband is agitated by a hallucination, I will try to explain to him that what he is seeing isn;t real (a snake in the house, for example), and at these times, he will look at the ground and say "Hmmm....." like he doesn't really believe me. I always tear up at these times because I can see the struggle in his eyes as he is trying to reconcile his world and mine. Other times he gets angry, denies what I am saying and insists on his version. Who am I to argue? His eyes tell him there is a snake on the floor. |