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Topic Stress of Facing surgery Go to previous topic Go to next topic Go to higher level

By Sheridan On 2014.09.20 23:44
My husband is 60 years old. He has had PD for at least 15 years. We have recently celebrated 37th anniversary. He was diagnosed with spinal stenosis last Dec. and had pain shots & physical therapy but has had no relief from his pain. Had to put back issues on hold when diagnosed with prostate cancer. Finished 8weeks of radiation on 9/1. He can no longer tolerate back pain and after consults with 2 surgeons is scheduled for spinal fusion surgery on 9/22. We know the risks of exacerbation of PD symptoms with the surgery but do not see any other options. I am really feeling the stress of managing all of these medical as well as insurance issues. Just found out that long term care insurance will not pay for his regular aide to be at hospital with him. I was hoping that between the 2of us someone could be with him for at least 12 hours daily to make sure he gets his PD meds on time. From past experience I really don't trust that nursing staff will stay on schedule every three hours. He will be admitted for at least 3 days. The surgery is stressful enough and I so want to leave his care to the experts but I know I can't and really sometimes I feel I am headed for a breakdown. Am trying to maintain control and be strong for husband but am frequently close to tears. I have seen therapist in past for situational crisis but not for awhile. Wondering if I may need anti anxiety med as the hits just keep coming...thanks for letting me unload this...maybe that's all I need.

By Witsend On 2014.09.21 00:23
Dear Sheridan, I just wanted to let you know that I know how you feel, and I will be holding you and your husband in my prayers during this time. Sometimes I just wish I had a magic wand to make all of our and our loved one's pain go away. Please keep in touch and let us know how you're doing.
Joni

By VioletV On 2014.09.21 09:36
Oh Sheridan,
How hard, to have to just keep "dealing" as these things hit the two of you. It sounds as if you are on your own in dealing with the issue of being on-hand for your husband.

I know you weren't looking for ideas, but in case this is useful, may I suggest talking to the hospital chaplaincy and social work departments right away? You don't have to be religious or a religious match to take advantage of the chaplains (who are, usually, wonderful and compassionate).

With the Aware in Care Kit (Free from the PD Foundation http://www.awareincare.org/), or its downloadable fact sheet and forms if you don't have the kit http://www.awareincare.org/whats-in-the-kit/) these departments may be able to understand why your husband MUST have attendance to ensure that his dopamine levels remain steady. These departments may have resources you don't know about. At least they may be able to give you a place to nap and a few moments while you are doing the lion's share.

And, the social work department may be able to advocate with the long term care insurance to understand why overnight care onsite is a must--there is research evidence that hospital staff often (75% of the time) do not administer Parkinson's meds correctly. (Here's the link to provide them: http://www.awareincare.org/pd-and-hospitalization/)

You deserve to have support in your devoted care of your husband. As a wife of a husband with PD who has three entirely unavailable adult children and one teenager I know that with one illness or injury I could be exactly in your shoes.

Please do stay in touch with us, who can at least affirm your sense that this is just (insert your favorite expletive) HARD.

VV

By moonswife On 2014.09.21 23:16
Sheridan, as my husband has had 4 surgeries since the 2 brain surgeries, I have past experience and will tell you BE THE ONE TO MONITOR THE MEDS. Do not trust that the staff understands "on time, everytime, with the right food, in the right quantities." Do not let them bs you that one small cup of lime jello is enough to stave off nausea from certain pills. All pain pills will wreck havoc with PD Rx. Be cautious with adding ANY med without talking to the movement disorder doctor. And take care that you stay hydrated, rested and informed. A hug from me.

By Mary556 On 2014.09.22 08:03
Sheridan, I'm so sorry to hear about all the upsets for your DH and yourself. You are remembered in my prayers. Peace be with you both.


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