For those who care for someone with Parkinson's disease
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By lynn On 2010.01.22 16:57
How do you know when it's time to sign a DNR and make the decision not to treat with antibiotics with late stage PD and dementia. You've already decided against the feeding tube and you know that it's just a matter of time before the next fall or infection. What process did you follow in your own head to guide you? Medical intervention can prolong most anything these days so how do you make the decision to say stop.

By annwood On 2010.01.22 20:02
It is a very personal decision and one usually based upon your beliefs and more importantly the beliefs of the patient. Hopefully this has been discussed earlier. It doesn't have to have been a formal discussion but can be thoughts or comments expressed when others may have been in that situation. I pretty much knew my husband's wishes and for me it became a matter of quality of life and dignity. That being said, I had to make this decision for my mother and my husband and it was tough. The thought that you are literraly holding another person's life in your hands. Think seriously what you would want to happen if you were in the same situation. Is the person in pain, is there any hope of recovery, where will you draw the line? As a nurse I have watched far too many people go through additional pain and torment when the family couldn't say "no". Good luck and stay with us.

By charley55 On 2010.01.23 09:40
I'm new to this site. Caring for my Mom who has PD. We recently had to change to a home care physician due to her inability to walk or be transported by car. I was stunned a little when I had to fill out the paperwork for DNR and some other life saving measures that would or would not be used. It's a tough decision but I opted for no extraordinary measures because the quality of life would most likely be nil. My Mom and I have talked about it. She doesn't want to be a burden and doesn't want to be kept alive just to lay there. But it's still a hard decision to make. I just hope that it's the right thing. Friends who have gone through this say you never know if you made the right decision, but you make the decision that's right for you.

On another note, I'm having a really hard time with caregiving right now as my Mom thinks I am taking away her independence. Is this normal. Sorry if this isn't the time to switch subjects.

By caregivermary On 2010.01.23 11:07

Has your husband signed a DNR previously? Are you just deciding if it is time to basically executive your husb's signed DNR? I am interested in where you are in this process because I do have the signed documents but I struggle with using them. This might sound ridiculous but it all wears on you doesn't it? Some people who have been through this with other diseases have told me that I will "KNOW" when it is time. I accept this but still wonder. Take care

By lynn On 2010.01.23 12:41
My husband has signed a living will and has expressed his wishes to me. I have heard from others that at a point you just "know" when it is time. I have no regrets about declining the feeding tube but it's the next steps that I'm not so sure of. Maybe this is a step -wise process and it takes time to adjust.

By Mary On 2010.01.29 16:06
charley55, yes, my Dad blamed me for his lack of independence. It is like he was in denial of what he was capable of doing. I would explain to him that decisions made were for his best interests but it never sunk in. When Dad would not follow what he was told, he would fall. Also, Dad would get mad at me because I would not help him practice the three words his neurologist left him with to remember. I tried explaining that would do him no good, but he was mad anyway. You know in your head you are doing the right thing, but in your heart it is hard telling a parent what they can and cannot do. Why don't they see that themselves? I don't know. Hugs and blessings, Mary

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