For those who care for someone with Parkinson's disease
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| My husband was diagnosed about a year ago with Parkinson's . He had the scan and is seeing a specialist every 6 months. In the past 2 months I have noticed a difference in his mood and mood swings. It seems that we are traveling on a track and suddenly there might be a small to medium rock on the track. He is completely derailed by this and is unable to get back on track. It is usually me that is blamed for this. I have said or did something. I am then punished and made to feel guilty for long periods of time. I suggested yesterday after a derailment that we needed to see the doctor again which was quickly thrown out. It is all me and I need to see someone. We are both still working and are 61. I feel very helpless. I want to distance myself from him but after 42 years of marriage I just don't know what to do. Is this it? Is this what my life and retirement will be? Please give me some hope. I need someone to tell me what to do!! |
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| My mom was diagnosed in 2010, and it has been an up and down ride. From your description, it could be many things. He may need a med adjustment, he may be emotionally adjusting to having the disease and just being frustrated, he may be having anxiety or depression related to the disease, or anxiety/depression just from the situation of having it. What I've had difficulty with is recognizing a reaction as "normal" when I am so often looking for abnormal reactions due to the disease or meds. Sometimes it is a normal reaction to be frustrated, upset, etc. |
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| Hi and welcome to the forum. It is confusing and at times overwhelming. Being diagnosed about a year ago is He on any medicines? Many Neurologists tend to hold off med's until really needed as the arsenal We have to try to treat P.D. is mostly drugs some with limited windows of effectiveness. I don't know what the scan is? One thing that might help, will help throughout our journey through Parkinson's is to go to a steps to grieving site pick out one (one you find comforting or easy to read) make a copy or two and keep them in easy reach, you'll be referring back to it many times during the course of the disease. It will also let you know that some actions and reactions are just normal in the grieving of our (patients) losses which keep changing over the progression of the disease. You've found a great tool or resource here on the forum. Again welcome. |
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Hello Kmarion, Welcome to the forum. It is true that a lot changes. At least with the diagnosis made, you have some explanation for the odd things that crop up. You are not to blame...and I would stand firm against being made to feel guilty. You need to know where your support is just as much as he does. I started keeping a small log or set of notes about observations related to change. This helps me when going to the doctor's appointments to share what is realistically happening. Continue taking care and time for yourself--you will need it. ~Lynn03 |
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Hi Marion, and welcome. We all have been where you are, and everyone has their own way of handling news of the diagnosis and finding the way forward. If you like being informed and knowing what the future could be like, keeping in mind that everyone is different, I would encourage you to read through the posts here as they contain a wealth of information. Having said that, I would offer this. Your husband may be acting out because he can't handle the diagnosis/situation any other way, and while this doesn't make it right, it hopefully helps you understand that it isn't you that is the issue. I think just about all of our PWP have blamed us for this or that at some point. This is a recurring theme in my own house, everything is someone else's fault, from the broken dishes to the poop smeared all over the floor, walls and counter and he is standing there with feces on his feet and hands but by golly, he didn't do it! I have found that for me, a lot can depend on my husband's emotional state at the time. His meds may need tweaking, sure, but sometimes he just can't handle things, and lashes out, and there we are. My husband has dementia and anxiety and hallucinations and delusions, and it is so difficult. When my husband is being actually mean and/or the conversation is pointless, I have learned from Violet here on the forum to explain that we aren't solving anything and then, if he is safe, walk away. Perhaps you could try this approach with your husband, let him know you are happy to help him any way you can, but you can't allow abuse. I hope this is helpful. Remember that everyone's PD is different, so what you read here or there does not mean that you and your husband will experience the same thing. The others are right, as well: you need to make sure that you take time to care for yourself, both physically and emotionally. We all say this but most of us really struggle to do it, myself included. |
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Welcome to the Forum, I am sorry you are being made to feel so badly, but even those of us whose PWP is highly functioning face situations like you describe. After many years of watching my normally kind, gentle husband slowly decline, he is now verbally angry more often than in the past. It is extremely difficult to watch and listen to his decline, but it is part of the progression of the disease. In our case, we have been able to travel and enjoy most days, but at times I often wonder if planning for these trips is what keeps his mind active, while not realizing that the actual trip takes its toll on both of us. We are in our 70's and in the normal progression of aging, but coupled with PD, long trips are way too tiring and logistics of travel are worrisome. "We have to stop to eat so I can take my meds." or "We cannot go on that excursion, I don't know how I'll feel." After all the pre-planning...Oh, well.... I also have come to realize that the PWP is desperately trying to remain the same and in his/her mind sees himself as having NO diminished abilities. But, sadly, the mind and body often do not cooperate. Just the other day, I became extremely frustrated that it was taking him so long to sign a credit card receipt at a restaurant. I thought it would be so much simpler if I just did it myself. But, instead, I have learned to excuse myself and head for the restroom to give him (and me) extra time. You, too, will learn to cope. How you handle PD is a deeply personal experience. You should read some of the posts here and learn from others' trials and successes. Take the advice of others, offer any advice you have. Caregiving is not unlike parenting, in that at first, everyone is new at this. We will make mistakes. We will be frustrated. But, we always have hope and successes, too...no matter how small. I, too, agree that you must learn to take care of yourself, too. Do NOT be someone's scapegoat. Just because he is ill, he has no right to talk to you badly. I agree...walk away. Hold your head up knowing it is the disease talking, not him. Know you are understood here. Sadly, we are all facing similar problems. All we can do is our best. And i am sure you are. |