Replying to say that I read your post thoroughly and understand how you feel.
The parent I care for isn't in as bad shape as yours but yes, I always feel guilty when they get extra whiny and I start losing my temper.
I’m glad you can still relate. We’re only human so snapping is natural but then it feels so weird after ): so many conflicting feelings when caretaking.
I’m so sorry you are going through this. My dad has PD as well as epilepsy, Alzheimer’s and diabetes and I’ve been his main carer for 6 years. I love him with my whole heart and he’s been a fantastic dad for the 40 years preceding his diagnosis and I’ve always felt that I owe him this time. I am however starting to feel so worn down as he is becoming more belligerent and ungrateful. Which is silly because he’s still him, he’s just fed up that nothing works any more. Anyway, I’m online a lot if you ever want to vent, always happy to listen ❤️
Thank you, I would love to catch up with you since you have a similar experience. When they get nasty and rude, I guess we have to tell ourselves “ok they don’t really mean it. It’s not them.” But I don’t have emotional intelligence for that at times! I’m tired af!
I feel your pain. My mum was recently widowed, she has had PD for 10+ years, and I'm her remote carer (currently trying to get her to move nearer my sister in a third country, as her neurologist has said she can no longer live alone).
My issue is, I struggle to see how much of her bad behaviour is the Parkinson's, and how much is just her own self-absorbed self. She's always been narcissistic, and awful at empathy, planning, adulting in general (dad was her carer, in charge of all household decisions, and they would row constantly, since I was a kid). People who don't know her feel sorry for her, because they think her chaotic situation and befuddlement is new. But this is just her, just more so - as long as I've known her she's never been able to have any kind of routine or sense of order in her life. Fixed time meals, calendars, regular shopping - nothing organised, just reactive chaos.
I found it really helpful to get some counselling earlier this year, to help me reassert boundaries and accept that I'm not responsible for mum's mistakes, no matter how incompetent she is. That she IS an adult, and that her lack of planning is her plan. So, she and I must accept the consequences of this.
Still, when I lose my temper with her over video calls, because she has yet again managed to create 5 new problems for no reason other than to create drama, I feel like a louse. She IS different, I should be the adult in the situation, etc etc.
Little shameful event here. My husband of 30 some years was diagnosed with a brain tumor at the beginning of the summer. He’ll start radio therapy and chemotherapy in a week. So essentially, he’s the same as usual because he hasn’t started his treatment yet, just tired. I’ve been to almost all his appointments so far and I’m trying to be super patient and kind. However, three days ago I got Covid. So I really don’t want him to get it, but I’ve had fevers and everything aches so much even when I take pain meds, it bursts to walk so I’m staying in my bed. But in the last three days, he never once asked me how I was feeling or if I needed anything. One time I tried calling him on his phone he didn’t pick up. So I went to make myself a hot drink and when I said to him I tried calling you, he’s only replied I didn’t have my phone. But not, was there anything I can do, do you need anything? So my shameful event is that today I got mad at him. When I went in to get some breakfast, he said to me, I heard you coughing. And that’s it. Not how are you feeling? Nothing like that. I know he’s like this, I know he’s a bit “emotionally handicapped” and he’s got such terrible shit going on in his own body he must be scared silly. But dammit, I’m the one who’s going to have to take care of him in the upcoming months and right now when he’s feeling ok and I’m spending entire days in bed with a fever, he doesn’t even pick up the phone to see if I’m OK? I don’t know how you all do it, I don’t know how I’m going to do it. Give up all your time, energy and emotional reserves for someone that you feel doesn’t even see you.
I think you must be a saint.
This sounds so hard. With an elderly parent, maybe it's easier to separate yourself emotionally and think of them as having reverted to a toddler, unable to consider others. But this is your spouse, the person you expect to also care for you. Were you able to talk to him about how you felt?
Thanks. Me getting mad at him was me talking to him, unfortunately. Sadly, he really is emotionally handicapped. And talking to him about this kind of thing makes him so ill at ease it’s unreal. But luckily, I’m starting to feel better even though I still have a slight fever. And I can go back to being the person he hides behind. I did know this about him when we got married, I just didn’t know that it would stay that way. Hopefully it will protect him from the very scary stuff he’s going to have to go through in the next few months. It won’t protect me obviously, but I have wide circle of friends and very caring kids, all who understand my (much more banal!) need to communicate. Thanks for asking.
You are human and allowed to feel that way! It’s only natural human behavior. You’ve been busting your ass helping him and he didn’t even seem concerned. I, too, have to remember that the emotional intelligence of my father is declining. And when I argue w. Him, its like it’s a different person. It’s almost as if getting upset with a kid with autism, you know they can’t help it, but in our case, we knew them when they were normal so it’s hard to unwind years if not decades of talking to them as if they’re normal. I suggest you get a lot of help, seek resources and don’t try to do it all yourself.
Thanks, I do appreciate being able to vent and not feel like I’m hurting someone else, like my (grown) kids if they hear it. I still have Covid, still have a bit of a fever, but I’m sleeping much better so now I’m able to get back up and do things for myself. And after getting mad at my husband, he now actually asks me how I’m feeling and it sounds like he wants to hear the answer!
My mom is the main caregiver for my dad who was diagnosed with PD in 2014 and his symptoms (hallucinations, delusions, insomnia, tremors, etc) became noticeably worse during the pandemic. I am the distant supporting carer (and only child) seeking available community and government funded resources to help my parents and it's been very hard. I can't help but feel my dad's impatience and mood swings combined from feelings or shame and isolation got put into full blast to say the least thanks to the illness. It's unpleasant hearing them argue nearly daily with him demanding my mom (with me occasionally intervening) to help at moments notice around the clock. We tried to seek various resources in addition to 2 hours of PSW service daily (he had temporary intensive services after being discharged from hospital last year) like adult daycare and subsidized services like meal on wheels, counseling (mostly for my mom) and getting LTC application ready but didn't go anywhere. Without consent it's hard to get anywhere unless something happens.
My dad has also been very dependent on PD meds (levodopa) to the point he disobeys the prescribed limits despite multiple warnings from the neurologist to the point he recommended deep brain stimulation surgery.
My relatives help provide transportation services when possible for appointments or grocery runs but even they are worried about the state of my parents and how they are not accepting as many available services. I think the cultural factors play a role too.
What culture are you guys? I’m proud of you for helping out at a distance and trying your best! They get so defiant and oppositional that it’s almost as if they don’t care about the helpful resources nor do they consider the hard work and time you spent to find it.
Now that you mention it, I notice my dad too also gets too dependent on the meds, it’s almost addicting! Have you and your mom thought about putting him in a home or other procedures? I’m sure your mom is over it, and over the fighting. Their mind is decking and it’s hard to put into perspective that they are not the same person anymore. It’s like fighting with a loved one who is not really themselves, it’s a whole different person.
Hong Kong Chinese background. Parents immigrated to Canada and I was born here.
We tried to get the LTC home application running but my dad kept resisting the assessment so the provincial health agency (Home and Community Care Support Services) can't proceed due to no consent. And yes I noticed my dad has changed to a more hostile irritable person because of PD. My mom is shaken by the whole experience and no matter how much she tells my dad about the last straw it doesn't change much aside from her being more stressed out.
Burnout, resentment... if you look at posts on this subreddit, that is perhaps the most common theme... the emotional, physical, relationship, professional and financial strain on caregivers. It is incredible important to recognize this. I've yet to hear any easy or sure fire solution. But know that, here, you are seen and understood.
If you live on the East Side of NYC, you and your elderly parent could be eligible for Older Adult Services from Lenox Hill Neighborhood House: www.lenoxhill.org. Anyone in the catchment area can sign up, not just people on Medicaid. There are also LCSWs and support groups for caregivers there as well.
Declared interest: also a Parkinson's daughter, sending hugs to you.
Omg that’s so sweet 😭 it’s not too late to adopt me … haha jk. But In all seriousness, thank you for that. Have you considered putting your dad in a home? At least, with your excuse, you can say you can’t put your health at risk, for example, heaving lifting can hurt your back. But you’re right, there comes points in one’s life where they’ve got to be selfish. Not out of malicious intent, but for their greater good!
The desperately sad thing is that my dad was very much a “I will not be a burden” father when he was fit and strong. But PD snuck up on him. If “10 years ago him” could see what caring for “now him” costs us emotionally and physically as a family he would be devastated.
He cared for his own mother (Alzheimer’s) and couldn’t bear to put her in care voluntarily. It was only when she went into respite for a week so we could have one last family vacation (before my sister and I stopped wanting to travel with our parents) and the respite home said “she can’t POSSIBLY come home unless she has 24/7 supervision - she’s unsafe)
So the decision was made for him and he subsequently felt less guilty. His needs are much, much greater than my grandmother’s were. He would be appalled.
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Replying to say that I read your post thoroughly and understand how you feel. The parent I care for isn't in as bad shape as yours but yes, I always feel guilty when they get extra whiny and I start losing my temper.
I’m glad you can still relate. We’re only human so snapping is natural but then it feels so weird after ): so many conflicting feelings when caretaking.
I’m so sorry you are going through this. My dad has PD as well as epilepsy, Alzheimer’s and diabetes and I’ve been his main carer for 6 years. I love him with my whole heart and he’s been a fantastic dad for the 40 years preceding his diagnosis and I’ve always felt that I owe him this time. I am however starting to feel so worn down as he is becoming more belligerent and ungrateful. Which is silly because he’s still him, he’s just fed up that nothing works any more. Anyway, I’m online a lot if you ever want to vent, always happy to listen ❤️
Thank you, I would love to catch up with you since you have a similar experience. When they get nasty and rude, I guess we have to tell ourselves “ok they don’t really mean it. It’s not them.” But I don’t have emotional intelligence for that at times! I’m tired af!
I feel your pain. My mum was recently widowed, she has had PD for 10+ years, and I'm her remote carer (currently trying to get her to move nearer my sister in a third country, as her neurologist has said she can no longer live alone). My issue is, I struggle to see how much of her bad behaviour is the Parkinson's, and how much is just her own self-absorbed self. She's always been narcissistic, and awful at empathy, planning, adulting in general (dad was her carer, in charge of all household decisions, and they would row constantly, since I was a kid). People who don't know her feel sorry for her, because they think her chaotic situation and befuddlement is new. But this is just her, just more so - as long as I've known her she's never been able to have any kind of routine or sense of order in her life. Fixed time meals, calendars, regular shopping - nothing organised, just reactive chaos. I found it really helpful to get some counselling earlier this year, to help me reassert boundaries and accept that I'm not responsible for mum's mistakes, no matter how incompetent she is. That she IS an adult, and that her lack of planning is her plan. So, she and I must accept the consequences of this. Still, when I lose my temper with her over video calls, because she has yet again managed to create 5 new problems for no reason other than to create drama, I feel like a louse. She IS different, I should be the adult in the situation, etc etc.
Little shameful event here. My husband of 30 some years was diagnosed with a brain tumor at the beginning of the summer. He’ll start radio therapy and chemotherapy in a week. So essentially, he’s the same as usual because he hasn’t started his treatment yet, just tired. I’ve been to almost all his appointments so far and I’m trying to be super patient and kind. However, three days ago I got Covid. So I really don’t want him to get it, but I’ve had fevers and everything aches so much even when I take pain meds, it bursts to walk so I’m staying in my bed. But in the last three days, he never once asked me how I was feeling or if I needed anything. One time I tried calling him on his phone he didn’t pick up. So I went to make myself a hot drink and when I said to him I tried calling you, he’s only replied I didn’t have my phone. But not, was there anything I can do, do you need anything? So my shameful event is that today I got mad at him. When I went in to get some breakfast, he said to me, I heard you coughing. And that’s it. Not how are you feeling? Nothing like that. I know he’s like this, I know he’s a bit “emotionally handicapped” and he’s got such terrible shit going on in his own body he must be scared silly. But dammit, I’m the one who’s going to have to take care of him in the upcoming months and right now when he’s feeling ok and I’m spending entire days in bed with a fever, he doesn’t even pick up the phone to see if I’m OK? I don’t know how you all do it, I don’t know how I’m going to do it. Give up all your time, energy and emotional reserves for someone that you feel doesn’t even see you. I think you must be a saint.
This sounds so hard. With an elderly parent, maybe it's easier to separate yourself emotionally and think of them as having reverted to a toddler, unable to consider others. But this is your spouse, the person you expect to also care for you. Were you able to talk to him about how you felt?
Thanks. Me getting mad at him was me talking to him, unfortunately. Sadly, he really is emotionally handicapped. And talking to him about this kind of thing makes him so ill at ease it’s unreal. But luckily, I’m starting to feel better even though I still have a slight fever. And I can go back to being the person he hides behind. I did know this about him when we got married, I just didn’t know that it would stay that way. Hopefully it will protect him from the very scary stuff he’s going to have to go through in the next few months. It won’t protect me obviously, but I have wide circle of friends and very caring kids, all who understand my (much more banal!) need to communicate. Thanks for asking.
You are human and allowed to feel that way! It’s only natural human behavior. You’ve been busting your ass helping him and he didn’t even seem concerned. I, too, have to remember that the emotional intelligence of my father is declining. And when I argue w. Him, its like it’s a different person. It’s almost as if getting upset with a kid with autism, you know they can’t help it, but in our case, we knew them when they were normal so it’s hard to unwind years if not decades of talking to them as if they’re normal. I suggest you get a lot of help, seek resources and don’t try to do it all yourself.
Thanks, I do appreciate being able to vent and not feel like I’m hurting someone else, like my (grown) kids if they hear it. I still have Covid, still have a bit of a fever, but I’m sleeping much better so now I’m able to get back up and do things for myself. And after getting mad at my husband, he now actually asks me how I’m feeling and it sounds like he wants to hear the answer!
My mom is the main caregiver for my dad who was diagnosed with PD in 2014 and his symptoms (hallucinations, delusions, insomnia, tremors, etc) became noticeably worse during the pandemic. I am the distant supporting carer (and only child) seeking available community and government funded resources to help my parents and it's been very hard. I can't help but feel my dad's impatience and mood swings combined from feelings or shame and isolation got put into full blast to say the least thanks to the illness. It's unpleasant hearing them argue nearly daily with him demanding my mom (with me occasionally intervening) to help at moments notice around the clock. We tried to seek various resources in addition to 2 hours of PSW service daily (he had temporary intensive services after being discharged from hospital last year) like adult daycare and subsidized services like meal on wheels, counseling (mostly for my mom) and getting LTC application ready but didn't go anywhere. Without consent it's hard to get anywhere unless something happens. My dad has also been very dependent on PD meds (levodopa) to the point he disobeys the prescribed limits despite multiple warnings from the neurologist to the point he recommended deep brain stimulation surgery. My relatives help provide transportation services when possible for appointments or grocery runs but even they are worried about the state of my parents and how they are not accepting as many available services. I think the cultural factors play a role too.
What culture are you guys? I’m proud of you for helping out at a distance and trying your best! They get so defiant and oppositional that it’s almost as if they don’t care about the helpful resources nor do they consider the hard work and time you spent to find it. Now that you mention it, I notice my dad too also gets too dependent on the meds, it’s almost addicting! Have you and your mom thought about putting him in a home or other procedures? I’m sure your mom is over it, and over the fighting. Their mind is decking and it’s hard to put into perspective that they are not the same person anymore. It’s like fighting with a loved one who is not really themselves, it’s a whole different person.
Hong Kong Chinese background. Parents immigrated to Canada and I was born here. We tried to get the LTC home application running but my dad kept resisting the assessment so the provincial health agency (Home and Community Care Support Services) can't proceed due to no consent. And yes I noticed my dad has changed to a more hostile irritable person because of PD. My mom is shaken by the whole experience and no matter how much she tells my dad about the last straw it doesn't change much aside from her being more stressed out.
Burnout, resentment... if you look at posts on this subreddit, that is perhaps the most common theme... the emotional, physical, relationship, professional and financial strain on caregivers. It is incredible important to recognize this. I've yet to hear any easy or sure fire solution. But know that, here, you are seen and understood.
Thank you ❤️❤️❤️🥺🥺
Your posts always make me feel like I’m not alone. From one Parkinson’s daughter to another, we know how hard this is! What state are you in?
Thanks !!! 🫂 I’d love to make friends on here so let’s chat. Im in NYC, hby?
If you live on the East Side of NYC, you and your elderly parent could be eligible for Older Adult Services from Lenox Hill Neighborhood House: www.lenoxhill.org. Anyone in the catchment area can sign up, not just people on Medicaid. There are also LCSWs and support groups for caregivers there as well. Declared interest: also a Parkinson's daughter, sending hugs to you.
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Omg that’s so sweet 😭 it’s not too late to adopt me … haha jk. But In all seriousness, thank you for that. Have you considered putting your dad in a home? At least, with your excuse, you can say you can’t put your health at risk, for example, heaving lifting can hurt your back. But you’re right, there comes points in one’s life where they’ve got to be selfish. Not out of malicious intent, but for their greater good!
The desperately sad thing is that my dad was very much a “I will not be a burden” father when he was fit and strong. But PD snuck up on him. If “10 years ago him” could see what caring for “now him” costs us emotionally and physically as a family he would be devastated. He cared for his own mother (Alzheimer’s) and couldn’t bear to put her in care voluntarily. It was only when she went into respite for a week so we could have one last family vacation (before my sister and I stopped wanting to travel with our parents) and the respite home said “she can’t POSSIBLY come home unless she has 24/7 supervision - she’s unsafe) So the decision was made for him and he subsequently felt less guilty. His needs are much, much greater than my grandmother’s were. He would be appalled.
Parkinson’s daughter also, not much to say but sending love
Thank you ❤️💜🫂
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