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Old 05-04-2010, 06:36 AM   #1
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Default Sorry I've been awol, very upset

Hi all,
Sorry I haven't been around. This is quite a long story. My mother has been variously ill with many things for the last couple of years. It seems impossible to get to the bottom of what is going on with her, she is in chronic pain with back problems and gastrointestional illness, has a tremor in her right hand, and a host of other seemingly unconnected issues. She has supposedly been under the care of a neurologist for the tremor. When we went to see her a couple of weeks ago I was shocked at her condition and my husband and I actually confronted (gently) my father with how shocking it was to see her like this. We discussed some things that he could do for her, but basically he is in total denial.

When I got home I started doing some research on line about her tremor. I vaguely remember being told that Parkinson's had been ruled out by the first neuro she saw, when they were still in the city. However, the more I googled, the more I realized all of her symptoms are connected to Parkinsons - the sleeplessness, the slowness of movement, falling, etc., etc. It became clear that she does have Parkinson's, but is certainly not being treated for it.

On Saturday my dad called and said my mom had fallen and "broken her hip." At this time I gently asked him about the Parkinsons, and it turns out the new neuro she is seeing feels fairly sure that it is indeed Parkinsons. No one ever said anything to me about that. I am an only child and fairly close to my parents. My dad said he doesn't believe it and thinks her problems are all psychological. My mom never mentioned it to me. My mom who is now in the hospital seems too out of it to talk on the phone.

I was thinking that one silver lining to breaking her hip is that she will be forced to go to rehab. But now, my father said she did not break her hip, only dislocated it. They may release her as soon as this weekend. I do not feel good about her going home. I think she will just take to her bed and my dad is not supportive. I want her to come to the city to see a Parkinson's specialist at Columbia Presbyterian, but am encountering resistance from my father. They are clearly both in denial about this but it is only going to get worse if she doesn't get the proper treatment.

I'm in such a bad spot because I feel so angry with both of them, but I cannot really express my anger as they'll just pull away further from me. I'm extremely disturbed by it all and don't really know what to do from here. On the one hand it is their journey, they are both still fairly copus mentis (or however you spell that) but on the other hand, sometimes someone has to step in. I just don't know if we are that point yet.

To complicate things, I am fairly hypochondriacal myself and am now worried that I have Parkinson's! I've been so strung out this whole weekend about this I'm feeling shakey myself. That's not helping either. It is just so depressing to witness. I have known many people confronted with disease who rose up and took charge of anything they could around it. My parents are just retreating and isolating themselves. They are very private, and there isn't any way I could call one of their friends or doctors without them feeling very intruded upon.

I haven't weighed and haven't really eaten much lately anyway. I doubt I've been off plan but have no idea if any damage is done. I suppose I shouldn't be worrying about that now...thanks for listening
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Old 05-04-2010, 06:56 AM   #2
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Old 05-04-2010, 06:57 AM   #3
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I'm so sorry to hear all that is happening with your parents. It is so complicated and so stressful.

I understand how it feels to be left out of the loop with essential family information...my Mother is very much into that pattern. I will hear of her ongoing situation from the neighbor. It makes me feel like she doesn't love me because she won't confide in me. In reality, I think it is part of the complex process of ageing and the denial that is associated with it.

I wish I had an answer...I haven't found it in my family network. Many times all I can do is take care of myself. Sorry I'm not much help, I just relate...
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Old 05-04-2010, 07:13 AM   #4
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Oh Mmc - that sounds so difficult. And so stressful. I wonder if there are some caregiver resources you could draw on... I know we have some here, designed to help people help their aging parents with various needs. I'm not thinking of their services for your parents (since it sounds like they would not want that yet), but they may have ideas for YOU. Please remember to take care of yourself too, as worried as you are about them.
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Old 05-04-2010, 08:46 AM   #5
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That is a very tough spot to be in. You might be able to get some information from your state's dept. of health and human services. If your parents decline any kind of help, there are still support groups out there for children of parents with Parkinson's. Best of luck to you and your parents.
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Old 05-04-2010, 09:09 AM   #6
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Wow! I am sorry to hear that you are going through this. My FIL has had Parkinsons for about 13 years and we have been through this same process from denial to no avoiding it. One thing that would be helpful is if someone - the doc maybe - could convince them to use a Parkinsons support group - it is a good way to get practical information for dealing with all the changes that occur. Even though it has been this long, there are still issues that my in-laws are in denial about - like there are changes that just have to be made to the house/bathroom because falls are such an issue with this disease. He has already broken his hip and it is a bad development. You can also find some good practical advice on line. In your parents defense, this is huge mental blow and being in denial is kind of a natural reaction. Some patience is required because they are probably terrified. The disease is extremely hard on the caregiving spouse so it will be important that your dad take care of himself too. I will be sending good thoughts for you and your folks your way! Hang in there. Hope this isn't too much information but you seem like the type that would rather be armed with good info than not. Best to you!
P.S. You can pm me if you want to talk!
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Old 05-04-2010, 09:10 AM   #7
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What a tough situation mmc, I'm so sorry.
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Old 05-04-2010, 10:51 AM   #8
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I am sorry you have to go through this. I understand the responsibility you feel as a daughter (I went though it when my mother had the stroke and my father didn't do anything to help her). I wish I had the answer for you. all my suggestions might not be helpful...so I will keep zipped.

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Old 05-04-2010, 11:09 AM   #9
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I'm so sorry to hear that you are going through this.

Could you speak to a medical social worker at the hospital? Often times they have excellent resources, and could perhaps be a good person to speak to your father about the changes that are happening right now. When I worked in Home Health, our MSW was absolutely instrumental in helping some of our families work through the disease process and treatment options. He or she may be able to help guide your father towards some more beneficial decisions.

Sending thoughts and prayers your way!
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Old 05-04-2010, 07:38 PM   #10
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What a terrible and stressful situation! I hope your mom and dad can come to terms with the reality of her health soon.

Big hugs to you and take care of yourself also.
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Old 05-04-2010, 09:19 PM   #11
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Wow, what a difficult situation. It's too bad the doctor can't get them to understand the diagnosis and help them get some support/education. Can you talk to the hospital social worker about your concerns? She may at least have some information you can use now or share with your folks when they are more receptive.
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Old 05-05-2010, 06:30 AM   #12
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I'll pray for you and your parents.
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Old 05-05-2010, 07:58 AM   #13
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Sorry to hear you're having to go thru this.
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