My father has been living with Parkinson's since 1998. He is only 62 years old. It has been very difficult for him and also our family. From his medications, we noticed a behavioural change in him. He is now retired but my mother is still working full-time. However, his need for her constant care during the night and some times during the day is taking a toll with her emotional and physical health. They argue constantly.
My father has been stubborn and will not be happy unless he gets whatever he wants, no matter how ridiculous it is. From the medication, he will say inappropriate things and some times even lie to us. My mother has become tired from lack of sleep (helping him flip when he is frozened, using the toilet, etc) and she is becoming paranoid with his behaviours. She is constantly worrying about where he is, if he is stuck somewhere because his medication wasn't working, etc. He also often times verbally manipulate and abuse her. He often times would say he wants to die...either out of depression or to upset my mother. She of course nags and gets frustrated/upset with him.
Unfortunately to make things worse, I am now living in another country and my brother is finishing up his medical fellowship in Los Angeles. We are pretty worried that our mother's health will decline.
I guess I don't really have a question. I just don't know what to do. I've tried talking to them, and have them communicate honestly in a non-volatile fashion. I've tried to convince them to go see a therapist or join a support group. They just won't do it! All they seem to want to do is argue.
I feel defeated and tired. I know they love each other but none of us knows what to do now.
Worrying about this stuff long distance is so hard! My heart goes out to you.
I am only just learning about Parkinson's recently, but I wonder if some of the emotional volatility and your dad's behavior is due to the disease or the meds? He may not be capable of healthier communication. On the other hand, do their interactions seem different than before the Parkinson's or is it just more of the same? Pre-existing dysfunction is sometimes exaggerated by illness.
I also wonder if you can communicate your worries to your mom's and dad's doctors so that the next time they go in for appointments, the doctors can keep an eye out for the problems you are describing and give both your parents some recommendations.
I think your mother needs some assistance. An aide, perhaps live-in, who can help with the physical work so she can rest, too. You might check our Local area of the site, and/or check with their state's agency on aging for resources for assistance, as well. Let us know how things are going!
Hi Anonymous,
I agree with Laura about getting your mother some help. Also, if they are able to use the internet, you could use "Skype" to make cheap video calls to the them and just check in and have them check in with you regularly. Sometimes just being able to see their faces, helps ease some of the anxiety. Good luck!
Hi Everyone,
Thank you for your lovely support!
The reason why they don't get any help is because of cost. Does anyone know about the average cost of hiring someone? Also, since most of his problems occur at night while he sleeps, I don't think either one of them are that comfortable about hiring someone as a live-in. *sigh*
My mom sent me a txt message saying they are alright and for me not to worry....and that she was just tired and said a few things that was bothering her. How can I not :( I notice her ageing, tired, not eating well...I've even recommended her to go see a naturapath.
We used to Skype...I need to organize a regular time with them to chat.
Thanks everyone!!
I'm with you on why a live-in aide won't work. We had a heck of a time trying to explain to the agency we were using to get an aide for my grandma why having someone live-in wouldn't help: because my grandma doesn't just need someone there in case she falls at night, she needs someone there to tell her it IS night, 'cause otherwise she's up getting dressed at eating breakfast--and calling friends, doctors, etc--at four o'clock in the morning! So, yeah, I totally understand why having someone who's going to be asleep at night isn't really a viable option.
As for cost...man, I'm sorry. Honestly, I don't even know how much it would cost (my grandma had long-term care insurance, but I bet someone else here could help you with that!), but I can tell you this, though I wish I didn't have to: as expensive as live-in care is, it's unfortunately much worse to do 24-hour, non-live-in (for example, two 12-hour shifts). Have you considered maybe trying to afford someone for just a few hours at night, to give your mom a break? Maybe find someone who could do a midnight-to-6am shift, or something like that? That would theoretically cover at least most of the night (which sounds like your dad's worst time), and give your mom six full hours of rest, if not real, dead-to-the-world sleep. Not enough, I understand, but it would be something.
In any case, good luck to you and your mom. I hope things get at least a little easier for both of you soon.
My best friend's mom and dad are in a similar situation. Her mom is angry at her dad, etc. Their solution was to have the mom sleep in another room, and then bring in an aid at night for 1 shift 2x a week during the workweek. Just so the mom could sleep. Then on weekends, 3 other siblings come in on alternating weekends for a day to give a little break. This is working really well. Can your brother take a weekend night? Good luck!
When I first started reading this post, I really thought you were my sister posting on here. My family's situation is almost exactly the same. My father also has parkinson's and was diagnosed in 1998 or 1999. He is almost 61. My mom is dealing with the exact same thing that your mom is. They don't communicate well and they just don't trust each other anymore. I don't know why they won't go to a counselor. My dad is impossibly stubborn and won't listen to the doctors. My mom has even threatened to leave my dad b/c mentally and emotionally she is just completely drained. Unfortunately I don't have any advice because my sister and I are still trying to deal with the situation. Good luck to you and if you come up with any solutions or ideas that help, please post. I would love to hear any ideas.
Dear All,
Lately, my mom told me that both of them have simplified their life a bit more. As some of you might know, with PK and the medication, the patient has this drive/need to keep busy and active. My parents used to be in church bible study, church choir, community choir, golf club, etc. They decided to cut most of those down to have time to relax.
Unfortunately with the recent economic pressures, I think my mom feels even MORE pressure from work. It's the last thing she needs.
Luckily, my brother is now calling them once a week. I've asked my auntie to do the same. I am also in constant communications with them via email or phone. I think this help my mom to handle things better emotionally at least. This seems to help a lot...esp for my mom. I strongly suggest you and your sister (and whoever else that is close to your parents) to keep that communcations going...letting them know they are loved and supported.
Please, stay in touch.
It was great to hear an update from you! I was wondering how it was going. I'm really glad to hear that they've cut back on some activities in order to be able to have some more "down time". That's SO important, especially with your mom still working full-time. I feel for her!
I also love your idea of having other family members call them once a week or so to check on them. I've never tried Skype but I keep meaning to do so! It seems like a valuable tool, especially for long-distance relationships.
Lisa
When was the last time your dad saw the doctor? Does your dad take anything for his moods? I am also in my 60's and have Parkinson, but see my doctor often. Many times my prescription needs changes. Exercise is so important too.
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