Helping Those Who Care for Parkinson's Patients
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My sister moved in with me about 2 years ago when she fell and broke her arm. She was diagnosed with PD at age 44, and she is now 61. I am 63. My mother had Alzheimer's, my father had dementia and my brother is a homeless Schizophrenic that I haven't seen for years (currently trying to find him to set up a Mental Health Conservatorship, but that is another story). So, my family has/had lots of brain related issues. Thankfully, I don't have any problems, and hope I don't at least for a long time. I'm thankful that I'm healthy and can take care of my sister. However, I am struggling with her recently, and am pretty unhappy. I find that I get very frustrated with her, angry with her, and I know that someday when she has passed, I'm going to feel a lot of guilt! Our biggest issue are the side effects from her medication - particularly her mania. The mania is most frustrating for me. She will be doing something and cannot stop, or if she sees something that catches her attention, even if she needs to be doing something else, she will sidetrack and start doing that thing. She has no willpower to fight her mania, and its all about feeling good at that moment, whether she is pulling weeds, or eating ice cream. It's like an addiction and nothing else matters but feeding that addiction. For example, she is unable to go to bed early enough to get her needed 9 hours sleep which helps greatly with all her PD symptoms, because she says that she feels so good in the evenings, she doesn't want it to stop so she doesn't want to go to bed. So instead she gets 5-6 hours of sleep a night, won't sleep in or take a long nap, and then the next day her balance is bad, her speaking is bad, her memory is bad, all her PD symptoms are bad! So we are trying some medications to combat the mania, which tend to sedate her, and make her balance worse. Currently we are trying different dosages of Depakote which the psychiatrist says has the least amount of side effects. As of today, she is still pretty manic, but she is falling all over the place. Probably we will have to try something different. She also has this inability to care about anything. I have talked to her about doing things that would make a difference in her PD symptoms such as eating better, and more exercise, but she just doesn't care. I've even asked her if she would like to live a long time or does she care if she died tomorrow. She has this beloved little dog, and I say "don't you want to live a long time for Joey?". She knows that she should care about living a long time, but she just can't find it in herself to really care. I know that lack of caring is part of PD and probably also a side effect from her meds. She just lives in the moment - what feels good right now is all she wants to do. She is not interested in any sort of delayed gratification that she will get if she does something that is not wonderful right now such as going to bed on time. She only wants to do what is wonderful now. So its almost like I have to turn off my caring about her, because I get so frustrated and it affects my daily life. I just say to myself that that's the way it is with her, and tell myself that I have no control over her. If she falls, well then I just scrape her up off the pavement and take her to the hospital if needed. If she cracks her head open and dies tomorrow, that is the choice she has made and I must accept it. I'm much more of a go-getter personality type, much more of a risk taker. Where my sister has high risk-avoidance, and has always just let life happen to her, and mostly just stayed home. She never married and never had any children. She and I would not be friends if we weren't related. She and I do not see eye to eye on most everything and I guess I just never really understood or liked her much. I'd see her at the holidays and that's about it. Now I see her every day and have to take care of her, and that is rough when you barely like the person. But because she is my sister, I will make sure she is taken care of. I'll do something I can be proud of. Thanks for letting me vent and any input is welcome. |
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Hi Cat, and welcome. I'm sorry you're having to deal with this and it's good you have a place to vent. We can all understand your feelings, I'm sure. So many of us are taking care of loved ones who have problems with both sleeping and apathy. (This weekend my husband was up at 3:30 am and didn't come back to bed for awhile. I thought he might have gone to watch tv, but later he said "oh, I decided to rake all the leaves off the driveway." The very STEEP driveway I might add, when his balance is terrible, in the middle of the night! On a rural road with no streetlights whatsoever. I don't know how he could even see what he was doing.) It sounds like you are taking the right approach - understanding that we can't control their choices or get them to take actions they don't want to, even if it would be for their own benefit. But it doesn't make it easier in the moment, does it? I have no answers but lots of supportive thoughts for you. Thank you for being such a thoughtful and kind sister. |
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I'm going to chime in here even though I'm no longer a caregiver, as we lost our battle with PD. I hope that's ok. I remember feeling as you do, so clearly, and it's such a hard spot. I would suggest that you search and read the posts by VioletV who used to post here. One of them dealt with this very issue and was so helpful to me when we were going through it. I had to realize that nagging my husband to do something, anything, was futile and to let it go. The tide of apathy in Parkinson's becomes increasingly stronger as you progress through the disease and your efforts to resist it increasingly pointless. I found that my nagging was just as stressful for my husband as it was for me-he just wanted to sit in peace and not be reminded that he could/should be doing this or that or whatever. In addition to being stressful, my nagging was absolutely futile. No matter what I said or did, my efforts to get my husband to engage in an activity were unsuccessful. We simply could not compete with Parkinson's. Even so, I found it incredibly hard to accept that my husband was content to sit in his chair all day, day after day after day, doing next to nothing. How could he be okay spending his days like that, when before PD there was nothing he couldn't, and didn't, do? But I had to accept the fact that if my husband was content to sit and nap off and on all day, then that's what we needed to do. Who was I to take that away from him? I also think, in hindsight, that I underestimated how limited my husband really was, much earlier than I realized and was willing to admit and accept. It breaks my heart to think that I was nagging my husband to walk, bike, do his therapy exercises, read or just look at a magazine, at a time when he was functionally just not really able to do so. He tried to fake it, and deny the extent of disability, telling me he "could" do it, but just didn't want to right now/would do it later....but later never came. You're doing a great job in the most difficult of situations. Remind yourself that even though it can be unbearably hard, your sister does appreciate being in your home, and your taking care of her. You won't regret it, and doing so will bring you much peace and comfort when your caregiving days come to an end. |
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We all know what you're going through. Forums like this help 'cause you know you're not the only one. First it was hubby's sense of smell, then it was his sense of humor, now it's his sense of caring. No matter what I'm going through, (pain, tiredness, etc.) he doesn't seem to care. I know he loves me and appreciates what I do for him, but even if he can't I want to hear him say "I wish I felt better so I could help you with that" All I can say is take time for yourself, read, go for a walk, whatever it takes to get away from sis for a while. We'll be praying for you. |
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I have not posted here in a while, since my husband died nearly two years ago. Still, I feel that this wonderful group got me through a great deal, and I come back from time to time. Yes, lurking is right.(And, hi!) We cannot will our partners' brains to have a sense of wanting to be well. I do remember posting some years ago about my husband saying to me that he knew that he was just sitting and looking around the room, and that he was content with that. He was a self-aware and insightful man, and long after he could not really care about how I felt, his sense of good manners told him that he should. That led him to explain to me a lot about how the world looked to him. He said to me once, I think it was when I was recovering from cancer surgery, "I know I should care, but I don't." It was said not out of indifference, but out of a sense of self-awareness and curiosity. Perhaps your sister would say something similar: "If I were well, I would want to live a long time and to take care of myself. But I'm not well, I am not particularly invested in living a long time, and I'll just go with where this life is taking me." The idea of "fighting" a disease that is incurable and progressively debilitating is a well person's idea. It may be easier for you and for her to make it as comfortable as possible for your family and for her to live out this life. Find things that give her great pleasure that you can tolerate. Be able to say "I'm worried that isn't safe. If you keep doing it I will let you know when I think you are in real danger," and otherwise leave her be. Make your caregiving decisions based on the things that will sustain your capacity to give her the care she needs. The hard truth? She won't be able to care for or about herself. What a tough road we caregivers walk. |
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Hello Cat, You are amazing! So good of you to be caring for your sister as she struggles with her afflictions. You have such a good heart. So many of us can relate to so much of what you say & so many people (thousands and thousands) are out there struggling with caregiving. It is THEE hardest job there is. Every single day holds so many challenges. My hubby is at the stage where he seems to be turning a corner to a worse state.....diminishing abilities. He just had his battery for his DBS system replaced via surgery and it was such an effort to get through. It was hard on him. I thought this wouldn’t be a huge deal, like the original surgery was three yrs ago....that it would just be a “procedure” but it was the full surgical route. We had the added fear of trying to avoid the virus so that made it even more stressful. Anyway, I just wanted to say that you are not alone in what you’re experiencing. Handling someone who is always in need is so difficult. Draining. Somehow I hope knowing there are more of you/us out there that that will give you strength to carry on. I feel like so many are suffering right now that we all have to hang on and just do our darndest to do the best we can. That’s all you can do. Don’t be hard on yourself. Bless you. Bless all of you out there. |